amomonamission

Made it past Christmas...

2012-01-21T15:53:00.000-08:00

Winter...blah....I used to love the snow. I have such great memories of sledding, bonfires, frozen toes, and hot chocolate with those huge marshmallows. I have spoken before of the neat little village that I grew up in and the fun things we did there. Winter meant grabbing your sled and heading up to the park to meet with your friends and sled ride until your toes were frozen. The guys in the town would go up hours before us girls and pour water down the big park hill to ice it down. They would also set up the fire pit. Huge truck inner tubes were also a part of our sledding fun. We did not have those nice,specialized ski clothes to keep us warm. We had the full-body sears snowsuits that you wore until you absolutely could not squeeze into them any more and we would put plastic bags over our toes to try to keep them dry(it did not work because of course the plastic made your feet sweat...dah!). We would then gather at my house after sledding and my mom would make hot chocolate for everyone. We would then start the slow, painful process of unthawing. Such great memories....now winter in Ohio means to me being home bound, temperature and weather fluctuations that cause my son ALex's body to do the craziest things, and having to worry more about the germs that are going around. ALex stayed healthy enough to make it through Christmas but within the first week of the new year...yep...we had to make a helicopter ride to Cleveland. Some how he had caught some serious bug and, despite the equipment and emergency medicine that I have here at the house, I knew he was getting too bad to stay at home. As I went to tell him that we had to go, ALex started to do what he did when he got sick in August, go unresponsive. Yep, he started to stare at me, then roll his eyes back, did not know who we were or where he was at. Oh boy, at least I had seen it before and knew we needed to quickly go. WE left the others at home(including the new puppy Lucy) and off to Cleveland by helicopter we went. ALex and I have flown 4 times together now. The pilot on our flight was the same one for three of the four and one of the nurses has flown with us before....interesting things to be familiar with huh. It is funny, I was relating something that I did to ALex on the flight at 3000 feet( I suctioned him with means I used a machine to clean the junk out of his lungs)to someone and they started going, "WOW", and I just simply stated talking about how this is now the norm for ALex and I. Whether we suction at home, in the back of the van, or at 3000 feet, it is pretty much the same for us. I started to talk about some of the people that we have met and some of the things they deal with....way off the norm of most of what society deals with. We got to the hospital and ALex got to see a beautiful sunset from the top of the 12-story hospital building. AS it can be with Alex, he was stable when we arrived so they just needed to figure out what medicine to give him and we got to go home the next day. It seems like a new norm for ALex's now teenager body, is that when he gets sick, the stress hormones seem to want to go into overdrive which can make him go unresponsive. This overdrive response is something that people with high-level spinal cord injuries have to deal with. It can occur from something as simple a pain from a hangnail. The body perceives the pain, but because of the mixed up signals to the brain, the body over responds...it can be a life-threatening situation! It is called autonomic dysreflexia and is not something to mess with and needs to be addressed immediately. SO ALex and I took a helicopter ride again, said hi to the PICU friends(they take care of both of us up there)and then had an enjoyable ambulance ride home. Yes, we really did need to go. ALex's body is fragile and when he starts to crash, there is not time to waste or think, you have to just go! Yea, you go to the mall and shop, some do brain surgery as part of their day, some wake up and work out to an extreme to do be able to do their professional sport....we all have things to do each day and even though you can get thrust into things that can seem so impossible to handle....remember that God does not call the equipped but instead equips the called....you can't but He certainly can.....blessings....

Back to the Bible

2012-01-20T08:04:00.000-08:00

I read a great devotional every day called "Streams in the Desert". It was sent to me by a dear lady who has walked (and is walking) a stoney path.....if you have anyone you know that is enduring great sorrow(I mean great) or maybe you yourself are, today's devotional about sorrow may give you the nugget to continue on....blessings..Beth

Back to the Bible

Alex and Lucy

2012-01-02T16:12:00.000-08:00

Alex and Lucy watching a bowl came together:)

ALex and Miss Connie

2011-12-26T16:17:00.000-08:00

One of are dear friends, Connie, and ALex. Don't they look great:)

Rudolph and Green Bunny

2011-12-26T16:15:00.000-08:00

So...Green Bunny met Rudolph a few years back. ALex has had Green Bunny since he was two days old. I found Rudolph the year ALex was in the car accident which was 2004. Rudolph's nose used to light up and talk. When Alex was in his coma, I would turn Rudolph on in front of Alex's face and see if her would track the light. It never worked but Rudolph has remained to remind of us of how far ALex has come....plus we just happen to LOVE Rudolph the Red-Nosed Reindeer:)

ALex and Lucy

2011-12-26T16:09:00.001-08:00

Lucy

2011-12-26T16:09:00.000-08:00

More of Lucy...check out her little tongue. She has it sticking out a lot!

Grace

2011-12-26T16:07:00.000-08:00

Yes, Grace is really sleeping with her legs bent up in the air. This is one of her many positions.

Lucy

2011-12-26T16:06:00.000-08:00

ALex asked for a little companion....this is Lucy. She is a Havanese puppy. Lucy is absolutely adorable. She has quickly adapted to us and because she does not shed, she can snuggle up to ALex where he can feel her. He even pets her by moving his chin up and down on her fur. Lucy is a sweetie:)

Mary E. Nachman

2011-12-26T16:00:00.000-08:00

Ten years ago my dear mom passed on. My mom taught me how to give to others, how to truly care,and she taught me the value of relationships. My mom never had much material wealth but instead she truly had something that went with her and left a trail behind her on those that she touched....unconditional love...it can not be bought or sold and it's value is truly unmeasurable. Sadly it took me until her death from here to really get it. I saw how those around her and those that knew her just loved her. She had such meager belongings but I think those of us that knew Mary Nachman feel like we received a great gift from her. I hope I can touch lives like my Mommy did. Love is free and can touch so deeply....

2011-12-23T16:18:00.000-08:00

Merry Christmas everyone!!!!!

ALex doing math problems with his Quadjoy

2011-12-10T15:36:00.000-08:00

This is a video of ALex using his mouthmouse called the Quadjoy to work on some math problems. The video gives some other ideas of what an individual can do with the Quadjoy. Click here to go directly to the Quadjoy website.

"The Vest"

2011-12-10T15:29:00.000-08:00

I use a shaker vest on my son ALex twice a day for twenty minutes each session. You can adjust several things on the vest such as how long a treatment will be as well as the strength and speed of the shake. The vest is designed to move the secretions around in ALex lungs which can help reduce the chance of infections as well as keep the lung tissue healthy. I run a saline-only aerosol at the same time as I run his vest treatment. This is a routine that I started on ALex last December. I so wish we would have gotten "The Vest" a long time ago...it really helps!!!ALex likes doing it too!Click here to go to the website of "The Vest" to find out more about it. For those individuals that can tolerate the shaking, I highly recommend this device.

Have you thought about....

2011-12-10T15:08:00.000-08:00

Many families will have a loved one in the hospital this Christmas season. Sadly, many of those loved ones will be children. Please consider a donation to your local hospital. A touch of love in the form of a gift, big or small, can delight that hospitalized person(child) and their families at a time when life may seem so bleak. Remember, that gift can be a visit not something material. Many individuals in the hospital may either not have family near by(some are here from other countries), or may not have family. The hospital and/or nursing home can be a very lonely place any time of year but at this time the feeling can seem even greater:( SO, I will make this thing of giving a bit easier...I am attaching a link to a wish list from the Children's hospital in Columbus, Ohio and Rainbow Babies and Children's in Cleveland, Ohio. ALex goes to Cleveland's Rainbow Babies and I personally know how we have been blessed at both places from both material items and personal touches.
Thanks guys!!!
Click here to go directly to the link for Nationwide Children's in Columbus, Ohio....
Click herefor a link to Rainbow Babies and Children's in Cleveland, Ohio
Blessings....Tis better to give than to receive....

ALex on his F.E.S. bike

2011-12-10T14:43:00.000-08:00

I made this video of my son ALex riding his F.E.S. bike back in June of 2011. I am not sure why I have not put it up on here, but here it is....

Terrible Towel

2011-12-10T14:31:00.000-08:00

The game between the Cleveland Browns and the Pittsburgh Steelers got pretty serious on Thursday December 8, 2011. ALex got to waving his Terrible Towel to make sure he did his part for the Steeler Nation!!!

Thanksgiving 2011

2011-12-05T15:27:00.000-08:00

My kids and my sister Kris and brother-in-law Karl's two girls...looking pretty silly and very happy!!!

2011-12-04T15:33:00.001-08:00

A situation does not have to own you but it certainly can be used to help determine the color of lenses through which you see the world....

Have you considered....

2011-12-04T13:54:00.000-08:00

Have you considered...donating to a local children's hospital at this time of year. Many kids will be spending Christmas in the hospital which can cause so much stress on the entire family. Also, the gift shop at the hospital might be surprising place to find a unique holiday decoration or gift. Much of the proceeds at the gift shop goes to the hospital. Not all hospitals have big budget corporations to back them. Just a thought.....When ALex was in close to Christmas in 2009, and over Christmas last year, I got the most awesome decorations and a few gifts and we got them as they were being clearanced...yahoo.

Kennedy Ng'ang'a the artist

2011-12-04T13:27:00.000-08:00

Kennedy has a spinal cord injury which restricts him in some ways but not in the beauty that he creates in his paintings. This young man has been given an amazing gift that he shares through painting. Please consider going to his website to view his online album. Click here to go to his webpage....blessings....

Thanksgiving

2011-11-24T10:31:00.001-08:00

Happy Thanksgiving everyone. Please remember when you are praying over your meal, to say a prayer for those that are missing a loved one at the meal this year for whatever reason that be. WE all have much to be thankful for!!!!Many blessings to those of our friends who are in the hospital this year, battling trying not to go to the hospital, or who are having their first Thanksgiving with a missing plate...love to all of you!

November 14, 2004 to November 14, 2011

2011-11-13T15:50:00.001-08:00

While they say that time is a great healer, and I think that it is true, I have also learned that time can sometimes allow us to have a better picture of something which can then actually make it even more painful when reflecting back. On November 14, 2004 my husband and then 6 /2 year-old son were involved in a horrific car accident. My husband survived but my son sustained a very complicated set of injuries that truly only by the mercy of God(and His plan) is ALex still here. This post is actually harder for me to write now then it would have been then. I have come to understand that God truly does and can cover us in His grace. It is that grace which allows us to survive in situations that we would have never believed we would have. You see I was in survival mode then. My youngest was only 3 days old. I had to tell my 4-year-old that his daddy and brother, (with whom he was inseparable), were in a serious car accident. I had to go to the hospital watching my precious three in the back seat(so innocent and oblivious as to what was happening) fully thinking that I would arrive and find out that my oldest had gone home to be with His father in heaven. I asked God to give me the strength. I would have to let Alex go for he was not mine but God's. I was entrusted with him only for the time God ordained not what I wanted. I called a friend who had lost her daughter the previous year to help me prepare....
I had to watch the whirlwind of people in the waiting area, my babies going off with a dear friend and not come back until two days later...man this is tough to write....no one except those in that position can fathom that feeling. My 4-year-old understood enough but was yet so tender. I had to watch them go(my baby stayed with me to be nursed when needed) as my oldest baby lay in a PICU(I did not even know what as PICU was(pediatric intensive care). I had to just DO then. Now when I think back to those moments I break down...I felt like I could not help any of my babies..
Now 7 years have passed. I understand that God brought His hands in to help that day in November of 2004. The trauma has had it's blows over these seven years. I have watched my oldest come back mentally but yet remain in a very fragile condition(yes I still do believe one day he will walk but right now he is fragile). I have watched my babies go through so much more that I ever did and my heart has gotten shattered over and over again.I have to leave them for days and sometimes weeks on end to go the hospital with ALex . There have been times when I just had to kiss them while heading out the door and watching their little faces look concerned and I could not take away their pain:( I have tried to teach them the God is ALWAYS there for them....He is....but it still hurts....
Seven years has healed some things but I actually have a harder time on the anniversary of the accident now then I did in the first few years. Some dear people in my life can not even talk about the day of the accident for it is still so real and so incredibly painful.
Time has allowed me to grow in ways I never could have imagined for myself.I feel so deeply now for others that get involved in a traumatic situation for I can relate to the pain in a very real way. I hate hearing the medical helicopter. And when I have been in PICU with my son ALex in the past few years, I am now a veteran not a rookie, I just cry and hurt for the new ones coming in.....
Time does alot of things....for this mom, seven years later, the trauma is now more real to me and now without the shock to block things, I feel the pain so much deeper....
Time....

I made the following video for ALex for his birthday to remind him that God is always faithful. He is! I wanted to make a video for all the kids but I just can not endure the putting together of it yet...Pain in this life is guaranteed in some measure. While that pain may always be there, our loving God can more than sustain us....I know!

Quote

2011-11-13T08:33:00.000-08:00

Brightly colored sunsets and starry heavens, majestic mountains and shining seas, and fragrant fields, and fresh-cut flowers are not even half as beautiful as a soul who is serving Jesus out of love, through the wear and tear of an ordinary, unpoetic life.
-Fredrick William Faber

A me feeling...

2011-11-10T14:52:00.000-08:00

It is no secret that I really have an issue with some of the video games that people are playing especially young children. I just happen to feel that what we see with our eyes and hear with our ears can really affect how we think and act. This opinion is my own and is not based on evidence or studies that I have read just a me feeling. SO with that being said, in my home, I have set some boundaries with the games that I feel could potentially harm my children's minds. Of course there are the bickering and the, "you just do not get or care what I like Mom" comments. I gave the old tried and true response of "you can hate me now but thank me later." I tell my children that I love them enough to say no. I hope that one day they come to understand that boundary that I am setting, and fighting to keep, is not because of one of not caring or control but truly because I care and love them and am looking to their future as an adult not just their instant pleasure as a child.. I will make many mistakes along this journey through life for I am human. Some of those mistakes may be made intentially(I just wanted to do what I wanted and no one was going to stop me kind of thing)and some of them I just did not get it or see it(that one day we can look back and say"oh if I knew now what I knew then" kind of thing). Though I can not change the past I can go forward with an intention to always do the most that I can to do the right thing and everything I can for if I do not(even with a lot of push back)and I feel so strongly that something is wrong, or could potentially harm my children, then am I not just blantantly wrong? Some things are worth fighting for and against no matter the opposition or comments you may face. Be strong and courageous David from the Bible was told:) and we all know what that little guy did:)

The Heath Evans Foundation

2011-11-09T16:22:00.000-08:00

I was watching ESPN with Alex and listening to the individuals speak out about some news going on. This guy came on named Heath Evans. Heath started a foundation to try to help victims that have experienced sexual abuse. Click here to go to his site. I encourage you to check it out. We have to raise awareness to the very real problem of sexual abuse. I know, you are probably sitting there getting ready to just scroll past my post but please do not. I myself have experienced abuse in my life and I only pray that people wake up and learn to read the signs and to act on them even if it is a person in a position that one would think(or want to believe) would never be capable of doing such a horrible act. It is real people!!! The victims become afraid to talk mainly due to either the embarrassment or the threats that were told to them over and over. SO these individuals then choose to live in their prison of silence. Many do eventually speak out to which a first reaction may be to either discount their story or tell them to be quiet to protect the perpetrator. Ok, I just encourage you to check Heath's site out. I pray that if you or someone you know has been victimized that you do find someone that you really think you can trust and tell! If that person does not receive your revealing of your secret well, tell someone else. You will find someone to help you...I did

Quote

2011-11-05T19:11:00.001-07:00

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”
― Elisabeth Kübler-Ross

Random act of kindness...

2011-11-05T19:04:00.000-07:00

Random act of kindness...I wanted to share something that happened to me tonight. I took Alex, Aaron, and Grace and Ryan to Columbus to a Once Upon a Child to try to get some winter play gear. WHat us out in November?...yes we did it...what a change from the housebound time of last year. SO we got what we could at the resale shop(love that place) and headed to the mall(I do not like malls..too crowded and expensive). We love to get bagels and go to the Yankee Candle store which our both housed under the same roof at the mall. If a candle is burning in our house, somehow the day seems brighter. Yankees are my splurge. Ok, so is perfume. My kids love to go in the candle store. I have trained them well. They explore the smells and are very good at holding the candles and to take the lids off without dropping the whole thing. SO we got a candle, got our bagels, toured just briefly, then ALex started to get very tired. We headed out to the parking lot. One of my children(I will not name them) was getting really grumpy. I was trying to deal with it and get everyone loaded. Did I mention that we have a rear-loader van so the wheelchair lift sticks way out into the isle. People are not quite sure what they should do...go around or wait. I motion them to go around. We are getting used to the stares from people but Aaron said something interesting. He said it is not the stares that he minds but that the people do it without saying hi. I told him that is why I try to say hi first for I think most people do not know if they should say something or not(Just F.Y.I. there) SO I got everyone on board, start pulling out, and this large truck starts pulling across the spot in front of me. I was not sure what was going on and started to get ready to get on the defensive.(last time we were there we witnessed some kind of thing going on that required security) I am glad I did not get defensive for the lady approached my van and handed me her carpet cleaning card(great I thought she was trying to sell me something). The dear lady did not want to sell me anything but instead wanted to offer to clean my carpets for free. She said she appreciated me as a mom. MAde me cry and what a gesture for my kids to witness! Random acts of kindness. The world can be very unfriendly at times, I wish more people would just reach out a hand....

oh yea...and the candle that we got is Alex's favorite..."Be Thankful"

2011-11-04T17:24:00.000-07:00

This picture was during the summer. Ryan was shading himself while watching Grace play softball.

2011-11-04T17:19:00.000-07:00

My son Aaron got his first trophy from playing football. I thought it would scare me to watch him play(the very real reality of spinal cord injury)but when I heard the first crunch of the football pads, the cheerleader in me came out. My kids say I sould like a man:)DEFENSE!!!!

2011-11-04T17:05:00.000-07:00

When ALex was in the hospiital iin August, the art therapy lady came by to paint a picture with ALex. He directs her as to what to paint. ALex asked her to paint a John Deere tractor(Ryan likes them)riding on a camo road(Aaron likes army stuff) and place a Barbie driving the rig(Grace loves Barbies). I think the art therapy lady did an excellent job:)

2011-11-04T16:52:00.000-07:00

So I get my son ALex all hooked up to his electriacl stim bike and he asks me to put a towel around his neck to make it look like he is working really hard.....then he acted like he was grunting....go ALex!!!

History...HisStory

2011-11-04T16:48:00.000-07:00

Question???? How can you recount accurately details of a story if it is not your experience??? Hummm.....I have learned to only give limited details of others stories for it is not mine to share. I also have not lived their position so there is no way I can really portray things the correct way. For instance I may express how I think I would feel having never been in a place even similar to their's.(been there done that one) There is the basic moral thing too that I have no right to share someone else's story or experience(unless of course they tell me too which in case I would make sure that every tiny detail is as accurate as can be)for I might mess up on some really crucial, intimate details....so not nice:( Everyone has a story that is why it is called HIS STORY ...messing with someone's HisStory to try to make your present reality more believable is just wrong. (I learned about this stuff on The Truth Project..highly recommend!!!)Just saying.....

Another injured little one....

2011-11-01T16:07:00.000-07:00

I was checking a family's caringbridge site and found out about another young child who is injured above the c1 vertebrae. Click here to read and follow the story of sweet little Margaret Romph.

Kory Wiita

2011-10-28T15:14:00.000-07:00

I have written several posts about a young man from here in Ohio named Kory Wiita. Kory was injured playing football a few years back. Of course, he was told he would not walk again(or at least stood very little chance too). Kory and his family have worked and devoted much towards proving that prognosis wrong. Unless you have been around someone with a cervical level spinal cord injury day in and day out, it would be nearly impossible to fully understand what challenges these individuals face daily. To stay healthy requires so much effort by not only the individual who is injured, but also by the person or team that cares for them. Well, to work towards recovery is a whole different ballgame. To use the word "work" would be to understate what is required to recover. Brutal effort, extreme patience, and perseverance I think can begin to describe what it takes to try to recover. Yes, money is needed too to be able to get the equipment needed, the help needed, and of course you also need a lot of time. Kory is giving it all and he is a true inspiration. Watch this following video and see what he is doing now. Feel free to go back through my blog to find other videos on Kory or look him up on youtube. You stand a much better chance these days that either you or someone you know will meet an individual with a cervical level injury or you may become injured yourself. There is so much hope but it takes all out brutal effort. Praise God that His strength can work through us right:)

Extreme Makeover Home Edition

2011-10-22T15:24:00.000-07:00

If you missed it last night you can click here to watch the first part of the Keefer family from Pennsylvania getting an extreme makeover done on their home. Click here to watch part two. The family have a son, Brian, who received a spinal cord injury. They do not state what level his injury is, but by the looks of his x-ray, it looks to be the cervical level. There are a few reasons why these particular episodes caught my attention. One is because I have a son who is injured. A few people we know were on the show on last night's episode. A place that specializes in recovery-focused therapy for individuals with spinal cord injuries named Kennedy Krieger(click here for info on K.K. I.) was featured. Finally, we who are close to someone who is injured, (or maybe are injured themselves), understand the immense challenges that exist in trying to navigate in a very physical world when that individual has a great physical challenge. There is so much technology available now days that can help individuals with paralysis stay healthier, regain function, and be better able to navigate this world. However, the devices and therapies come at a cost that make accessing them sometimes seemingly impossible. There are a bunch of foundations out there that give out grants for needed items and even therapies, but finding the right foundation can take endless hours and the funds are limited. I dream of creating a foundation, or maybe linking foundations together, to make finding the funds easier. Any edge that can be taken off of these challenging journeys can make such an enormous difference.
IN the show last night, it was stated that the dad was the the full-time caregiver of his son who was injured. The dad said one of the coolest lines about what he does is not something that he has to do, but something that he wants to do. He said he would do anything for his son as would I.
We parents want to give our children the best that they need, but in the world of paralysis, I think we would all settle right now for some bits independence and functionality for our loved ones.
Thanks to Extreme Home Makeover, maybe there will be an increased awareness to the needs that exist for individuals with paralysis, and the possibilites for recovery that can and are happening.

Boom Town: Ohio Town Sees Thousands of New Jobs - ABC News#.TqCpBPbSg3s.facebook#.TqCpBPbSg3s.facebook#.TqCpBPbSg3s.facebook

2011-10-20T18:53:00.000-07:00

Boom Town: Ohio Town Sees Thousands of New Jobs - ABC News#.TqCpBPbSg3s.facebook#.TqCpBPbSg3s.facebook#.TqCpBPbSg3s.facebook

This is a stroy about the area where I grew up. It sounds like there are some exciting possibilities!!!

Quote

2011-10-20T16:18:00.001-07:00

I saw this quote and had to share it. I do not know the author...
"you never know how strong you are, until being strong is the only choice you have."

POTS Syndrome

2011-10-20T16:12:00.000-07:00

Have you ever heard of POTS syndrome??? SOmeone told me of this condition today and I thought I would look it up. Here is an article that I found from The National Institute of Neurological Disorders and Stroke.....

What is Postural Tachycardia Syndrome?

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again. Anyone at any age can develop POTS, but the majority of individuals affected (between 75 and 80 percent) are women between the ages of 15 to 50 years of age. Some women report an increase in episodes of POTS right before their menstrual periods. POTS often begins after a pregnancy, major surgery, trauma, or a viral illness. It may make individuals unable to exercise because the activity brings on fainting spells or dizziness.

Doctors aren't sure yet what causes the reduced return of blood to the heart that occurs in OI, or why the heart begins to beat so rapidly in POTS. Current thinking is that there are a number of mechanisms. Some patients have peripheral denervation (neuropathic POTS); some have symptoms that are due to sustained or parosyxmal overactivity of the sympathetic nervous system (hyperadrenergic POTS); and some individuals have PTOS dominated by features of deconditioning.

Is there any treatment?

Therapies for POTS are targeted at relieving low blood volume or regulating circulatory problems that could be causing the disorder. No single treatment has been found to be effect for all. A number of drugs seem to be effective in the short term. Whether they help in long term is uncertain. Simple interventions such as adding extra salt to the diet and attention to adequate fluid intake are often effective. The drugs fludrocortisone (for those on a high salt diet) and midodrine in low doses are often used to increase blood volume and narrow blood vessels. Drinking 16 ounces of water (2 glassfuls) before getting up can also help raise blood pressure. Some individuals are helped by beta receptor blocking agents. There is some evidence that an exercise program can gradually improve orthostatic tolerance.

What is the prognosis?

POTS may follow a relapsing-remitting course, in which symptoms come and go, for years. In most cases (approximately 80 percent), an individual with POTS improves and becomes functional, although some residual symptoms are common.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) and other Institutes of the National Institutes of Health (NIH) conduct research related to POTS in their laboratories at the NIH and support additional research through grants to major research institutions across the country. Much of this research focuses on finding better ways to prevent, treat, and ultimately cure disorders such as POTS.

NIH Patient Recruitment for Postural Tachycardia Syndrome Clinical Trials
At NIH Clinical Center
Throughout the U.S. and Worldwide
NINDS Clinical Research Collaboration Trials
Organizations

National Dysautonomia Research Foundation
P.O. Box 301
Red Wing, MN 55066-0301
ndrf@ndrf.org
http://www.ndrf.org
Tel: 651-267-0525
Fax: 651-267-0524

Dysautonomia Youth Network of America, Inc.
1301 Greengate Court
Waldorf, MD 20601
info@dynakids.org
http://www.dynakids.org
Tel: 301-705-6995
Fax: 301-638-DYNA

Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

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Last updated October 04, 2011

Caringbridge

2011-09-27T15:56:00.000-07:00

I get on several Caringbridge sites and follow them. Caringbridge is a free Internet site where people can set up a web page for someone they know(or themselves) who may be sick or injured. I get notifications over my email when an update to a site occurs. Well last night, a precious family that I have been following(and wish I could physically help)posted about a very scary scenario that happened to them over the weekend. I do not like to attempt to tell someone else's story so I will just say click here to go directly to the family's Caringbridge site. The family's name is Johnson. Their youngest son has a high level spinal cord injury. His name is Owen and he is only three. These high-level injuries are so unpredictable and there are no books written to tell you do this, don' do that. The things that have been written about spinal cord injuries, I have found, do not seem to fit as well for injuries above c3. If you receive such a high injury, or have loved one who does, be prepared to educate your self as much as you can. You can be taught some basics but you will have a lot of field study. One of the really good things now days, is that there are more ways that those with these types of injuries, or those that care for individuals with these types of injuries, to connect. I remember one time when my son ALex's body did something really crazy(it has a lot but this one time in particular) he ended up in the hospital and I got several emails giving possible suggestions as to what may be happening with him. No, these individuals are not doctors or nurses, better yet, they live with an injury that is high up on the spinal cord. They themselves have had things happened to them that puzzle doctors and are sometimes left with not a defined reason as to what happened to them that caused it. Anyway, I thought today I would try to get some more people to send words of encouragement to this family. The first year post injury can be so challenging but it is survivable even when it does not feel that way!

2011-09-26T19:16:00.000-07:00

I guess I have fallen through on my thirty days of posts huh:) I hate to say life is busy for I just do not like to think that way. I personally think in priorities. Some days there are more things occurring that take priorities over other things and at the end of the day some things have to just wait. Take a breath.....Ok, so I guess there have been many things going on. SO, the topic was spinal cord injuries...oh yea...so if you do not know someone with one...just wait. I do not know if more injuries are occurring or if it is that more are surviving...maybe it is a bit of both. At any rate, you stand a much greater chance of encountering someone with an injury....man I hope it is not you. At any level your life can be turned completely upside down. If you have to use a wheelchair, try to navigate in a very physical world can be beyond challenging. If you have to use a power wheelchair, it is even rougher. If you think the "accessible" signs really mean accessible, yea...try it. I think most things were originally designed for a basic, small, wheelchair. How about your dear family member's house that you loved going to before you got injured but now their house is inaccessible to you:( You can buy a portable ramp but maybe they have a stairwell right inside the door...can't get around it and you can not go through it. What about if their doors are older and not wide enough. Well, you could ask them to gut their house just so you can visit. SO many simple things can become challenging with a spinal cord injury. The higher up the injury, the more complicated. For us, my son has a ventilator and tag-along trailer to carry a 60 pound battery plus loads of equipment. Just getting a van that we could all of his equipment and people to fit in was tough. When I take him to Cleveland for his doctor visits, he and I spend the night in a hotel. The amount of supplies I need to take plus his equipment, takes up almost all of our fifteen-passenger van. Most of his supplies can not be bought at the local Walmart:) The good news is that it used to be that a spinal cord injury meant death. Then, depending on your level of injury, you might survive but being home or hospital-bound was the only hope. Now, there are more and more options for those that get injured but there needs to be ALOT more!!!! Unless you have to deal with an injury yourself, or care for someone with one....you have no idea of the around the clock challenges. I remember talking to another mom who has two children with spinal cord injuries at different levels. They did not have nursing care(an assumption is that nurses know what to do with SCI's but the reality is that it is a specialty that few have not to mention that having extra people in your house is a HUGE privacy issue). Friends of the family got trained to take care of the children so mom and dad could have a night out. The result was that the friends said that looking in from the outside, they knew it was challenging, but actually doing the 24 hour duty was exhausting! Well, exhausting it may be but let me clue you in on a secret....we are a blessed group that get to have a our eyes opened to the very real challenges that so many deal with every day. There is very real pain and sometimes only when we get a taste of real suffering can we gain the compassionate hearts that our so needed in this very me-centered society. Anyway...just rambling....

2011-09-16T18:55:00.001-07:00

I am at my best when I am serving and caring for others....I struggle the most when I watch the weak and the vunerable being exploited and taken advantage of...:-(

Quadjoy

2011-09-16T15:17:00.001-07:00

This video was done last year. Finding a device(s) that works for an individual with a high-level spinal cord injury can sometimes be difficult. (I can not speak for others but from my own experiences). My son Alex currently has very limited head control so finding a device that worked right for him has been challenging. Alex was not well enough when he was first injured to really try any devices out in the hospital which is typically what happens. The hospital (rehab facility)has a specialist in technology that will bring different devices to the patient to try out until they find one(s) that works for them. Alex was never in official "rehab" so that did not happen. AS he started to get better at home, getting someone to come to the house with devices to try was like trying to find a needle in a haystack:-) Well, this was so cool....a guy had heard about Alex and bought the Quadjoy without really knowing if it would work for him or not. That was in early 2005, right after Alex came home. Alex tried the device and was able to operate it. That device was the Quadjoy. ALex did fine with it until it got broken(by a therapist). Then, when his back started to curve so much, Alex could not even sit up let alone blow air enough to work the computer:-( ALex needed to be able to communicate and work the computer so we started to look for other devices that might work for him. We tried an eyegaze system first. With an eyegaze system, you look at the screen and control the cursor with your eyes and click the mouse by blinking. The device seemed to work but the price was so high and it had to go through the insurance. While we had been waiting in frustration for the eyegaze system to get approved(or not) we remembered the Quadjoy. Alex was feeling so much better so he gave it a whirl....walaa...it worked!!! By the time the eyegaze arrived,(it would end up taking about eighteen months to get it), Alex had become so proficient with the Quadjoy that the eyegaze seemed way too complicated and frustrating to figure out. The eyegaze is sitting on the sidelines for right now. The system is really cool but it has a learning curve and ALex wants to just keep moving forward!!! (the extremely long delays in getting necessary items is for another post)SO it is the QUadjoy that Alex is using in the video, and it is simply, a mouthmouse. He sips and puffs air into a little wand and it controls the cursor like a hand operated mouse would. We just got a new Quadjoy which has a basic joystick function. Our hopes are that Alex can play atleast some basic computer video games. He is a kid you know:-)

Moral of the story...do not give up and the right device is out there!!!

Click here to go directly to the Quadjoy site.
Blessings.....

2011-09-16T09:36:00.001-07:00

Listen to this quote....CHARLES H. SPURGEON QUOTATION

"I owe everything to the furnace and the hammer. I have made no progress in heavenly learning except when I have been whipped by the great Schoolmaster. The best piece of furniture in my house has been the cross. My greatest enricher has been personal pain, and for that I desire to thank God."

Off Day....

2011-09-13T18:18:00.001-07:00

My Grace has a nasty virus.....gotta go...

Standing

2011-09-12T18:51:00.000-07:00

The above picture is of my son ALex on a tilt table. A tilt table allows an individual to be brought up slowly to better prevent dramatic blood pressure changes. Have you ever stood up to fast and got dizzy?? ALex used to stand in a device called an Easy Stand. Here is a video.....Click here to read some of the mutiple benefits of standing for someone with a spinal cord injury.I saw first-hand what can happen to someone who does not have weight-bearing for a length of time. Last year when ALex bed-bound for many months, his lower legs literally started to angle out. As much as I was moving him, he was not getting any weight-bearing on his long bones. Fortunately, a good friend, who is a rep for a brace company, came to the rescue. She showed me how to stretch, press, and brace Alex's legs back into the proper alignment. When he was able to start to stand again, his bones started to improve.
When we(myself and our physical therapist) found out about standing and what we needed to do it, the doctor would not sign a script for the device. We ordered our first stander off of Ebay. We finally found a doctor to sign a prescription and then after a long wait, insurance funded a better fitting stander. I am so glad that someone told us about the benefits in standing and believed in it!!

Bummer....

2011-09-11T17:52:00.000-07:00

This journey does not get easier by any means, but you get better able to walk it...or atleast try. Today my second oldest son, Aaron, had his first football game. Aaron is 11. Alex was so excited, as was I, to go see him play. A few weeks ago we tried to go to Aaron's scrimmage and we had to end up missing it:-( Well today would turn out to be no different. Alex's lungs have been struggling with the weather fluctuations but today his lungs were much better. Today it would be the weather itself that would be the issue. There were storm cells all over the place. The storm would hit, then pass, then hit again..GRRRRRR...so once again, we could not go. It it so hard to watch the pain in ALex's face and hear him get so frustrated. Once again this mom has to miss a child's first:-( I can not change the situation so we have to let it go, grieve, and make the best of what we can. Oh we were very grumpy. You can not understand the pain unless you have been there...trust me I know some claim to but they have not a clue!!!!

An Audio Visual Presentation about Acute Spinal Cord Injury

2011-09-11T17:44:00.000-07:00

There is a clip in this video where it talks about when an initial injury occurs and making sure that you check the airway, breathing, and circulation. Funny...about a month ago when my son ALex had some crazy episode that the docs and I think was do to his autonomic system but we all thought at first was a seizure, when I called 911one of the first things they asked me was if I was giving Alex CPR. Well, I had a pulse-ox(meaures his heartrate and oxygen levels) already on him.I could tell the dispatcher what Alex's vitals were(except fot blood pressure because I could not reach my cuff but I could tell by his heartrate that that vital was ok). I do not think they are used to getting that information when someone calls 911. Interesting what you may be called to handle at home:-)ANd I had no prior medical training...crash course and it was an in -the home-study:-)

Levels of function in spinal cord injury

2011-09-11T17:42:00.000-07:00

A Whole Bunch of Information about Spinal Cord Injury

2011-09-10T17:56:00.000-07:00

The following, very long, very informative post, was prepared by the National Institute of Neurological Disorders and Stroke. Click here to go directly to their page where you can find a whole bunch more information. The websites listed towards the end of the post, should direct link you to the actual website. Blessings to you as you seek to educate yourself about spinal cord injuries. There are so many individuals out there who are injured, and so many caregivers that take care of individuals with spinal cord injuries. ALL of them need support in various ways. Thank you.

A Short History of the Treatment of Spinal Cord Injury

Accounts of spinal cord injuries and their treatment date back to ancient times, even though there was little chance of recovery from such a devastating injury. The earliest is found in an Egyptian papyrus roll manuscript written in approximately 1700 B.C. that describes two spinal cord injuries involving fracture or dislocation of the neck vertebrae accompanied by paralysis.* The description of each was "an ailment not to be treated."

Centuries later in Greece, treatment for spinal cord injuries had changed little. According to the Greek physician Hippocrates (460-377 B.C.) there were no treatment options for spinal cord injuries that resulted in paralysis; unfortunately, those patients were destined to die. But Hippocrates did use rudimentary forms of traction to treat spinal fractures without paralysis. The Hippocratic Ladder was a device that required the patient to be bound, tied to the rungs upside-down, and shaken vigorously to reduce spinal curvature. Another invention, the Hippocratic Board, allowed the doctor to apply traction to the immobilized patient's back using either his hands and feet or a wheel and axle arrangement.

Hindu, Arab, and Chinese physicians also developed basic forms of traction to correct spinal deformities. These same principles of traction are still applied today.

In about 200 A.D., the Roman physician Galen introduced the concept of the central nervous system when he proposed that the spinal cord was an extension of the brain that carried sensation to the limbs and back. By the seventh century A.D., Paulus of Aegina was recommending surgery for spinal column fracture to remove the bone fragments that he was convinced caused paralysis.

In his influential anatomy textbook published in 1543, the Renaissance physician and teacher Vesalius described and illustrated the spinal cord in all its parts. The illustrations in his books, based on direct observation and dissection of the spine, gave physicians a way to understand the basic structure of the spine and spinal cord and what could happen when it was injured. The words we use today to identify segments of the spine - cervical, thoracic, lumbar, sacral, and coccygeal - come directly from Vesalius.

With the widespread use of antiseptics and sterilization in surgical procedures in the late nineteenth century, spinal surgery could finally be done with a much lower risk of infection. The use of X-rays, beginning in the 1920s, gave surgeons a way to precisely locate the injury and also made diagnosis and prediction of outcome more accurate. By the middle of the twentieth century, a standard method of treating spinal cord injuries was established - reposition the spine, fix it in place, and rehabilitate disabilities with exercise. In the 1990s, the discovery that the steroid drug methylprednisolone could reduce damage to nerve cells if given early enough after injury gave doctors an additional treatment option.

What Is a Spinal Cord Injury?

Although the hard bones of the spinal column protect the soft tissues of the spinal cord, vertebrae can still be broken or dislocated in a variety of ways and cause traumatic injury to the spinal cord. Injuries can occur at any level of the spinal cord. The segment of the cord that is injured, and the severity of the injury, will determine which body functions are compromised or lost. Because the spinal cord acts as the main information pathway between the brain and the rest of the body, a spinal cord injury can have significant physiological consequences.

Catastrophic falls, being thrown from a horse or through a windshield, or any kind of physical trauma that crushes and compresses the vertebrae in the neck can cause irreversible damage at the cervical level of the spinal cord and below. Paralysis of most of the body including the arms and legs, called quadriplegia, is the likely result. Automobile accidents are often responsible for spinal cord damage in the middle back (the thoracic or lumbar area), which can cause paralysis of the lower trunk and lower extremities, called paraplegia.

Other kinds of injuries that directly penetrate the spinal cord, such as gunshot or knife wounds, can either completely or partially sever the spinal cord and create life-long disabilities.

Most injuries to the spinal cord don't completely sever it. Instead, an injury is more likely to cause fractures and compression of the vertebrae, which then crush and destroy the axons, extensions of nerve cells that carry signals up and down the spinal cord between the brain and the rest of the body. An injury to the spinal cord can damage a few, many, or almost all of these axons. Some injuries will allow almost complete recovery. Others will result in complete paralysis.

Until World War II, a serious spinal cord injury usually meant certain death, or at best a lifetime confined to a wheelchair and an ongoing struggle to survive secondary complications such as breathing problems or blood clots. But today, improved emergency care for people with spinal cord injuries and aggressive treatment and rehabilitation can minimize damage to the nervous system and even restore limited abilities.

Advances in research are giving doctors and patients hope that all spinal cord injuries will eventually be repairable. With new surgical techniques and exciting developments in spinal nerve regeneration, the future for spinal cord injury survivors looks brighter every day.

This brochure has been written to explain what happens to the spinal cord when it is injured, the current treatments for spinal cord injury patients, and the most promising avenues of research currently under investigation.

Facts and Figures About Spinal Cord Injury

There are an estimated 10,000 to 12,000 spinal cord injuries every year in the United States.
A quarter of a million Americans are currently living with spinal cord injuries.
The cost of managing the care of spinal cord injury patients approaches $4 billion each year.
38.5 percent of all spinal cord injuries happen during car accidents. Almost a quarter, 24.5 percent, are the result of injuries relating to violent encounters, often involving guns and knifes. The rest are due to sporting accidents, falls, and work-related accidents.
55 percent of spinal cord injury victims are between 16 and 30 years old.
More than 80 percent of spinal cord injury patients are men

Source: Facts and Figures at a Glance, May 2001. National Spinal Cord Injury Statistical Center.
How Does the Spinal Cord Work?

To understand what can happen as the result of a spinal cord injury, it helps to know the anatomy of the spinal cord and its normal functions.

Spine Anatomy

The soft, jelly-like spinal cord is protected by the spinal column. The spinal column is made up of 33 bones called vertebrae, each with a circular opening similar to the hole in a donut. The bones are stacked one on top of the other and the spinal cord runs through the hollow channel created by the holes in the stacked bones.

The vertebrae can be organized into sections, and are named and numbered from top to bottom according to their location along the backbone:

Cervical vertebrae (1-7) located in the neck
Thoracic vertebrae (1-12) in the upper back (attached to the ribcage)
Lumbar vertebrae (1-5) in the lower back
Sacral vertebrae (1-5) in the hip area
Coccygeal vertebrae (1-4 fused) in the tailbone
Although the hard vertebrae protect the soft spinal cord from injury most of the time, the spinal column is not all hard bone. Between the vertebrae are discs of semi-rigid cartilage, and in the narrow spaces between them are passages through which the spinal nerves exit to the rest of the body. These are places where the spinal cord is vulnerable to direct injury.

The spinal cord is also organized into segments and named and numbered from top to bottom. Each segment marks where spinal nerves emerge from the cord to connect to specific regions of the body. Locations of spinal cord segments do not correspond exactly to vertebral locations, but they are roughly equivalent.

Cervical spinal nerves (C1 to C8) control signals to the back of the head, the neck and shoulders, the arms and hands, and the diaphragm.
Thoracic spinal nerves (T1 to T12) control signals to the chest muscles, some muscles of the back, and parts of the abdomen.
Lumbar spinal nerves (L1 to L5) control signals to the lower parts of the abdomen and the back, the buttocks, some parts of the external genital organs, and parts of the leg.
Sacral spinal nerves (S1 to S5) control signals to the thighs and lower parts of the legs, the feet, most of the external genital organs, and the area around the anus.
The single coccygeal nerve carries sensory information from the skin of the lower back.

Spinal Cord Anatomy

The spinal cord has a core of tissue containing nerve cells, surrounded by long tracts of nerve fibers consisting of axons. The tracts extend up and down the spinal cord, carrying signals to and from the brain. The average size of the spinal cord varies in circumference along its length from the width of a thumb to the width of one of the smaller fingers. The spinal cord extends down through the upper two thirds of the vertebral canal, from the base of the brain to the lower back, and is generally 15 to 17 inches long depending on an individual's height.

The interior of the spinal cord is made up of neurons, their support cells called glia, and blood vessels. The neurons and their dendrites (branching projections that help neurons communicate with each other) reside in an H-shaped region called "grey matter."

The H-shaped grey matter of the spinal cord contains motor neurons that control movement, smaller interneurons that handle communication within and between the segments of the spinal cord, and cells that receive sensory signals and then send information up to centers in the brain.

Surrounding the grey matter of neurons is white matter. Most axons are covered with an insulating substance called myelin, which allows electrical signals to flow freely and quickly. Myelin has a whitish appearance, which is why this outer section of the spinal cord is called "white matter."

Axons carry signals downward from the brain (along descending pathways) and upward toward the brain (along ascending pathways) within specific tracts. Axons branch at their ends and can make connections with many other nerve cells simultaneously. Some axons extend along the entire length of the spinal cord.

The descending motor tracts control the smooth muscles of internal organs and the striated (capable of voluntary contractions) muscles of the arms and legs. They also help adjust the autonomic nervous system's regulation of blood pressure, body temperature, and the response to stress. These pathways begin with neurons in the brain that send electrical signals downward to specific levels of the spinal cord. Neurons in these segments then send the impulses out to the rest of the body or coordinate neural activity within the cord itself.

The ascending sensory tracts transmit sensory signals from the skin, extremities, and internal organs that enter at specific segments of the spinal cord. Most of these signals are then relayed to the brain. The spinal cord also contains neuronal circuits that control reflexes and repetitive movements, such as walking, which can be activated by incoming sensory signals without input from the brain.

The circumference of the spinal cord varies depending on its location. It is larger in the cervical and lumbar areas because these areas supply the nerves to the arms and upper body and the legs and lower body, which require the most intense muscular control and receive the most sensory signals.

The ratio of white matter to grey matter also varies at each level of the spinal cord. In the cervical segment, which is located in the neck, there is a large amount of white matter because at this level there are many axons going to and from the brain and the rest of the spinal cord below. In lower segments, such as the sacral, there is less white matter because most ascending axons have not yet entered the cord, and most descending axons have contacted their targets along the way.

To pass between the vertebrae, the axons that link the spinal cord to the muscles and the rest of the body are bundled into 31 pairs of spinal nerves, each pair with a sensory root and a motor root that make connections within the grey matter. Two pairs of nerves - a sensory and motor pair on either side of the cord - emerge from each segment of the spinal cord.

The functions of these nerves are determined by their location in the spinal cord. They control everything from body functions such as breathing, sweating, digestion, and elimination, to gross and fine motor skills, as well as sensations in the arms and legs.

The Nervous Systems

Together, the spinal cord and the brain make up the central nervous system (CNS).

The CNS controls most functions of the body, but it is not the only nervous system in the body. The peripheral nervous system (PNS) includes the nerves that project to the limbs, heart, skin, and other organs outside the brain. The PNS controls the somatic nervous system, which regulates muscle movements and the response to sensations of touch and pain, and the autonomic nervous system, which provides nerve input to the internal organs and generates automatic reflex responses. The autonomic nervous system is divided into the sympathetic nervous system, which mobilizes organs and their functions during times of stress and arousal, and the parasympathetic nervous system, which conserves energy and resources during times of rest and relaxation.

The spinal cord acts as the primary information pathway between the brain and all the other nervous systems of the body. It receives sensory information from the skin, joints, and muscles of the trunk, arms, and legs, which it then relays upward to the brain. It carries messages downward from the brain to the PNS, and contains motor neurons, which direct voluntary movements and adjust reflex movements. Because of the central role it plays in coordinating muscle movements and interpreting sensory input, any kind of injury to the spinal cord can cause significant problems throughout the body.

What Happens When the Spinal Cord Is Injured?

A spinal cord injury usually begins with a sudden, traumatic blow to the spine that fractures or dislocates vertebrae. The damage begins at the moment of injury when displaced bone fragments, disc material, or ligaments bruise or tear into spinal cord tissue. Axons are cut off or damaged beyond repair, and neural cell membranes are broken. Blood vessels may rupture and cause heavy bleeding in the central grey matter, which can spread to other areas of the spinal cord over the next few hours.

Within minutes, the spinal cord swells to fill the entire cavity of the spinal canal at the injury level. This swelling cuts off blood flow, which also cuts off oxygen to spinal cord tissue. Blood pressure drops, sometimes dramatically, as the body loses its ability to self-regulate. As blood pressure lowers even further, it interferes with the electrical activity of neurons and axons. All these changes can cause a condition known as spinal shock that can last from several hours to several days.

Although there is some controversy among neurologists about the extent and impact of spinal shock, and even its definition in terms of physiological characteristics, it appears to occur in approximately half the cases of spinal cord injury, and it is usually directly related to the size and severity of the injury. During spinal shock, even undamaged portions of the spinal cord become temporarily disabled and can't communicate normally with the brain. Complete paralysis may develop, with loss of reflexes and sensation in the limbs.

The crushing and tearing of axons is just the beginning of the devastation that occurs in the injured spinal cord and continues for days. The initial physical trauma sets off a cascade of biochemical and cellular events that kills neurons, strips axons of their myelin insulation, and triggers an inflammatory immune system response. Days or sometimes even weeks later, after this second wave of damage has passed, the area of destruction has increased - sometimes to several segments above and below the original injury - and so has the extent of disability.

Changes in blood flow cause ongoing damage
Changes in blood flow in and around the spinal cord begin at the injured area, spread out to adjacent, uninjured areas, and then set off problems throughout the body.

Immediately after the injury, there is a major reduction in blood flow to the site, which can last for as long as 24 hours and becomes progressively worse if untreated. Because of differences in tissue composition, the impact is greater on the interior grey matter of the spinal cord than on the outlying white matter.

Blood vessels in the grey matter also begin to leak, sometimes as early as 5 minutes after injury. Cells that line the still-intact blood vessels in the spinal cord begin to swell, for reasons that aren't yet clearly understood, and this continues to reduce blood flow to the injured area. The combination of leaking, swelling, and sluggish blood flow prevents the normal delivery of oxygen and nutrients to neurons, causing many of them to die.

The body continues to regulate blood pressure and heart rate during the first hour to hour-and-a-half after the injury, but as the reduction in the rate of blood flow becomes more widespread, self-regulation begins to turn off. Blood pressure and heart rate drop.

Excessive release of neurotransmitters kills nerve cells
After the injury, an excessive release of neurotransmitters (chemicals that allow neurons to signal each other) can cause additional damage by overexciting nerve cells.

Glutamate is an excitatory neurotransmitter, commonly used by nerve cells in the spinal cord to stimulate activity in neurons. But when spinal cells are injured, neurons flood the area with glutamate for reasons that are not yet well understood. Excessive glutamate triggers a destructive process called excitotoxicity, which disrupts normal processes and kills neurons and other cells called oligodendrocytes that surround and protect axons.

An invasion of immune system cells creates inflammation
Under normal conditions, the blood-brain barrier (which tightly controls the passage of cells and large molecules between the circulatory and central nervous systems) keeps immune system cells from entering the brain or spinal cord. But when the blood-brain barrier is broken by blood vessels bursting and leaking into spinal cord tissue, immune system cells that normally circulate in the blood - primarily white blood cells - can invade the surrounding tissue and trigger an inflammatory response. This inflammation is characterized by fluid accumulation and the influx of immune cells - neutrophils, T-cells, macrophages, and monocytes.

Neutrophils are the first to enter, within about 12 hours of injury, and they remain for about a day. Three days after the injury, T-cells arrive. Their function in the injured spinal cord is not clearly understood, but in the healthy spinal cord they kill infected cells and regulate the immune response. Macrophages and monocytes enter after the T-cells and scavenge cellular debris.

The up side of this immune system response is that it helps fight infection and cleans up debris. But the down side is that it sets off the release of cytokines - a group of immune system messenger molecules that exert a malign influence on the activities of nerve cells.

For example, microglial cells, which normally function as a kind of on-site immune cell in the spinal cord, begin to respond to signals from these cytokines. They transform into macrophage-like cells, engulf cell debris, and start to produce their own pro-inflammatory cytokines, which then stimulate and recruit other microglia to respond.

Injury also stimulates resting astrocytes to express cytokines. These "reactive" astrocytes may ultimately participate in the formation of scar tissue within the spinal cord.

Whether or not the immune response is protective or destructive is controversial among researchers. Some speculate that certain types of injury might evoke a protective immune response that actually reduces the loss of neurons.

Free radicals attack nerve cells
Another consequence of the immune system's entry into the CNS is that inflammation accelerates the production of highly reactive forms of oxygen molecules called free radicals.

Free radicals are produced as a by-product of normal cell metabolism. In the healthy spinal cord their numbers are small enough that they cause no harm. But injury to the spinal cord, and the subsequent wave of inflammation that sweeps through spinal cord tissue, signals particular cells to overproduce free radicals.

Free radicals then attack and disable molecules that are crucial for cell function - for example, those found in cell membranes - by modifying their chemical structure. Free radicals can also change how cells respond to natural growth and survival factors, and turn these protective factors into agents of destruction.

Nerve cells self-destruct
Researchers used to think that the only way in which cells died during spinal cord injury was as a direct result of trauma. But recent findings have revealed that cells in the injured spinal cord also die from a kind of programmed cell death called apoptosis, often described as cellular suicide, that happens days or weeks after the injury.

Apoptosis is a normal cellular event that occurs in a variety of tissues and cellular systems. It helps the body get rid of old and unhealthy cells by causing them to shrink and implode. Nearby scavenger cells then gobble up the debris. Apoptosis seems to be regulated by specific molecules that have the ability to either start or stop the process.

For reasons that are still unclear, spinal cord injury sets off apoptosis, which kills oligodendrocytes in damaged areas of the spinal cord days to weeks after the injury. The death of oligodendrocytes is another blow to the damaged spinal cord, since these are the cells that form the myelin that wraps around axons and speeds the conduction of nerve impulses. Apoptosis strips myelin from intact axons in adjacent ascending and descending pathways, which further impairs the spinal cord's ability to communicate with the brain.

Secondary damage takes a cumulative toll
All of these mechanisms of secondary damage - restricted blood flow, excitotoxicity, inflammation, free radical release, and apoptosis - increase the area of damage in the injured spinal cord. Damaged axons become dysfunctional, either because they are stripped of their myelin or because they are disconnected from the brain. Glial cells cluster to form a scar, which creates a barrier to any axons that could potentially regenerate and reconnect. A few whole axons may remain, but not enough to convey any meaningful information to the brain.

Researchers are especially interested in studying the mechanisms of this wave of secondary damage because finding ways to stop it could save axons and reduce disabilities. This could make a big difference in the potential for recovery.
What Are the Immediate Treatments for Spinal Cord Injury?

The outcome of any injury to the spinal cord depends upon the number of axons that survive: the higher the number of normally functioning axons, the less the amount of disability. Consequently, the most important consideration when moving people to a hospital or trauma center is preventing further injury to the spine and spinal cord.

Spinal cord injury isn't always obvious. Any injury that involves the head (especially with trauma to the front of the face), pelvic fractures, penetrating injuries in the area of the spine, or injuries that result from falling from heights should be suspect for spinal cord damage.

Until imaging of the spine is done at an emergency or trauma center, people who might have spinal cord injury should be cared for as if any significant movement of the spine could cause further damage. They are usually transported in a recumbent (lying down) position, with a rigid collar and backboard immobilizing the spine.

Respiratory complications are often an indication of the severity of spinal cord injury. About one third of those with injury to the neck area will need help with breathing and require respiratory support via intubation, which involves inserting a tube connected to an oxygen tank through the nose or throat and into the airway.

Methylprednisolone, a steroid drug, became standard treatment for acute spinal cord injury in 1990 when a large-scale clinical trial supported by the National Institute of Neurological Disorders and Stroke showed significantly better recovery in patients who were given the drug within the first 8 hours after their injury. Methylprednisolone appears to reduce the damage to nerve cells and decreases inflammation near the injury site by suppressing activities of immune cells.

Realignment of the spine using a rigid brace or axial traction is usually done as soon as possible to stabilize the spine and prevent additional damage.

On about the third day after the injury, doctors give patients a complete neurological examination to diagnose the severity of the injury and predict the likely extent of recovery. The ASIA Impairment Scale is the standard diagnostic tool used by doctors. X-rays, MRIs, or more advanced imaging techniques are also used to visualize the entire length of the spine.

ASIA (American Spinal Injury Association) Impairment Scale*

Classification Description
A Complete: no motor or sensory function is preserved below the level of injury, including the sacral segments S4-S5
B Incomplete: sensory, but not motor, function is preserved below the neurologic level and some sensation in the sacral segments S4-S5
C Incomplete: motor function is preserved below the neurologic level, however, more than half of key muscles below the neurologic level have a muscle grade less than 3 (i.e., not strong enough to move against gravity)
D Incomplete: motor function is preserved below the neurologic level, and at least half of key muscles below the neurologic level have a muscle grade of 3 or more (i.e., joints can be moved against gravity)
E Normal: motor and sensory functions are normal

* Used with permission of the American Spinal Injury Association.

Spinal cord injuries are classified as either complete or incomplete, depending on how much cord width is injured. An incomplete injury means that the ability of the spinal cord to convey messages to or from the brain is not completely lost. People with incomplete injuries retain some motor or sensory function below the injury.

A complete injury is indicated by a total lack of sensory and motor function below the level of injury.

How Does a Spinal Cord Injury Affect the Rest of the Body?

People who survive a spinal cord injury will most likely have medical complications such as chronic pain and bladder and bowel dysfunction, along with an increased susceptibility to respiratory and heart problems. Successful recovery depends upon how well these chronic conditions are handled day to day.

Breathing

Any injury to the spinal cord at or above the C3, C4, and C5 segments, which supply the phrenic nerves leading to the diaphragm, can stop breathing. People with these injuries need immediate ventilatory support. When injuries are at the C5 level and below, diaphragm function is preserved, but breathing tends to be rapid and shallow and people have trouble coughing and clearing secretions from their lungs because of weak thoracic muscles. Once pulmonary function improves, a large percentage of those with C4 injuries can be weaned from mechanical ventilation in the weeks following the injury.

Pneumonia

Respiratory complications, primarily as a result of pneumonia, are a leading cause of death in people with spinal cord injury. In fact, intubation increases the risk of developing ventilator-associated pneumonia (VAP) by 1 to 3 percent per day of intubation. More than a quarter of the deaths caused by spinal cord injury are the result of VAP. Spinal cord injury patients who are intubated have to be carefully monitored for VAP and treated with antibiotics if symptoms appear.

Irregular heart beat and low blood pressure

Spinal cord injuries in the cervical region are often accompanied by blood pressure instability and heart arrhythmias. Because of interruptions to the cardiac accelerator nerves, the heart can beat at a dangerously slow pace, or it can pound rapidly and irregularly. Arrhythmias usually appear in the first 2 weeks after injury and are more common and severe in the most serious injuries.

Low blood pressure also often occurs due to loss of tone in blood vessels, which widen and cause blood to pool in the small arteries far away from the heart. This is usually treated with an intravenous infusion to build up blood volume.

Blood clots

People with spinal cord injuries are at triple the usual risk for blood clots. The risk for clots is low in the first 72 hours, but afterwards anticoagulation drug therapy can be used as a preventive measure.

Spasm

Many of our reflex movements are controlled by the spinal cord but regulated by the brain. When the spinal cord is damaged, information from the brain can no longer regulate reflex activity. Reflexes may become exaggerated over time, causing spasticity. If spasms become severe enough, they may require medical treatment. For some, spasms can be as much of a help as they are a hindrance, since spasms can tone muscles that would otherwise waste away. Some people can even learn to use the increased tone in their legs to help them turn over in bed, propel them into and out of a wheelchair, or stand.

Autonomic dysreflexia

Autonomic dysreflexia is a life-threatening reflex action that primarily affects those with injuries to the neck or upper back. It happens when there is an irritation, pain, or stimulus to the nervous system below the level of injury. The irritated area tries to send a signal to the brain, but since the signal isn't able to get through, a reflex action occurs without the brain's regulation. Unlike spasms that affect muscles, autonomic dysreflexia affects vascular and organ systems controlled by the sympathetic nervous system.

Anything that causes pain or irritation can set off autonomic dysreflexia: the urge to urinate or defecate, pressure sores, cuts, burns, bruises, sunburn, pressure of any kind on the body, ingrown toenails, or tight clothing. For example, the impulse to urinate can set off high blood pressure or rapid heart beat that, if uncontrolled, can cause stroke, seizures, or death. Symptoms such as flushing or sweating, a pounding headache, anxiety, sudden high blood pressure, vision changes, or goosebumps on the arms and legs can signal the onset of autonomic dysreflexia. Treatment should be swift. Changing position, emptying the bladder or bowels, and removing or loosening tight clothing are just a few of the possibilities that should be tried to relieve whatever is causing the irritation.

Pressure sores (or pressure ulcers)

Pressure sores are areas of skin tissue that have broken down because of continuous pressure on the skin. People with paraplegia and quadriplegia are susceptible to pressure sores because they can't move easily on their own.

Places that support weight when someone is seated or recumbent are vulnerable areas. When these areas press against a surface for a long period of time, the skin compresses and reduces the flow of blood to the area. When the blood supply is blocked for too long, the skin will begin to break down.

Since spinal cord injury reduces or eliminates sensation below the level of injury, people may not be aware of the normal signals to change position, and must be shifted periodically by a caregiver. Good nutrition and hygiene can also help prevent pressure sores by encouraging healthy skin.

Pain

People who are paralyzed often have what is called neurogenic pain resulting from damage to nerves in the spinal cord. For some survivors of spinal cord injury, pain or an intense burning or stinging sensation is unremitting due to hypersensitivity in some parts of the body. Others are prone to normal musculoskeletal pain as well, such as shoulder pain due to overuse of the shoulder joint from pushing a wheelchair and using the arms for transfers. Treatments for chronic pain include medications, acupuncture, spinal or brain electrical stimulation, and surgery.

Bladder and bowel problems

Most spinal cord injuries affect bladder and bowel functions because the nerves that control the involved organs originate in the segments near the lower termination of the spinal cord and are cut off from brain input. Without coordination from the brain, the muscles of the bladder and urethra can't work together effectively, and urination becomes abnormal. The bladder can empty suddenly without warning, or become over-full without releasing. In some cases the bladder releases, but urine backs up into the kidneys because it isn't able to get past the urethral sphincter. Most people with spinal cord injuries use either intermittent catheterization or an indwelling catheter to empty their bladders.

Bowel function is similarly affected. The anal sphincter muscle can remain tight, so that bowel movements happen on a reflex basis whenever the bowel is full. Or the muscle can be permanently relaxed, which is called a "flaccid bowel," and result in an inability to have a bowel movement. This requires more frequent attempts to empty the bowel and manual removal of stool to prevent fecal impaction. People with spinal cord injuries are usually put on a regularly scheduled bowel program to prevent accidents.

Reproductive and sexual function

Spinal cord injury has a greater impact on sexual and reproductive function in men than it does in women. Most spinal cord injured women remain fertile and can conceive and bear children. Even those with severe injury may well retain orgasmic function, although many lose some if not all of their ability to reach satisfaction.

Depending on the level of injury, men may have problems with erections and ejaculation, and most will have compromised fertility due to decreased motility of their sperm. Treatments for men include vibratory or electrical stimulation and drugs such as sildenafil (Viagra). Many couples may also need assisted fertility treatments to allow a spinal cord injured man to father children.

Once someone has survived the injury and begun to psychologically and emotionally cope with the nature of his or her situation, the next concern will be how to live with disabilities. Doctors are now able to predict with reasonable accuracy the likely long-term outcome of spinal cord injuries. This helps patients set achievable goals for themselves, and gives families and loved ones a realistic set of expectations for the future.
How Does Rehabilitation Help People Recover From Spinal Cord Injuries?

No two people will experience the same emotions after surviving a spinal cord injury, but almost everyone will feel frightened, anxious, or confused about what has happened. It's common for people to have very mixed feelings: relief that they are still alive, but disbelief at the nature of their disabilities.

Rehabilitation programs combine physical therapies with skill-building activities and counseling to provide social and emotional support. The education and active involvement of the newly injured person and his or her family and friends is crucial.

A rehabilitation team is usually led by a doctor specializing in physical medicine and rehabilitation (called a physiatrist), and often includes social workers, physical and occupational therapists, recreational therapists, rehabilitation nurses, rehabilitation psychologists, vocational counselors, nutritionists, and other specialists. A case-worker or program manager coordinates care.

In the initial phase of rehabilitation, therapists emphasize regaining leg and arm strength since mobility and communication are the two most important areas of function. For some, mobility will only be possible with the assistance of devices such as a walker, leg braces, or a wheelchair. Communication skills, such as writing, typing, and using the telephone, may also require adaptive devices.

Physical therapy includes exercise programs geared toward muscle strengthening. Occupational therapy helps redevelop fine motor skills. Bladder and bowel management programs teach basic toileting routines, and patients also learn techniques for self-grooming. People acquire coping strategies for recurring episodes of spasticity, autonomic dysreflexia, and neurogenic pain.

Vocational rehabilitation begins with an assessment of basic work skills, current dexterity, and physical and cognitive capabilities to determine the likelihood for employment. A vocational rehabilitation specialist then identifies potential work places, determines the type of assistive equipment that will be needed, and helps arrange for a user-friendly workplace. For those whose disabilities prevent them from returning to the workplace, therapists focus on encouraging productivity through participation in activities that provide a sense of satisfaction and self-esteem. This could include educational classes, hobbies, memberships in special interest groups, and participation in family and community events.

Recreation therapy encourages patients to build on their abilities so that they can participate in recreational or athletic activities at their level of mobility. Engaging in recreational outlets and athletics helps those with spinal cord injuries achieve a more balanced and normal lifestyle and also provides opportunities for socialization and self-expression.

How Is Research Helping Spinal Cord Injury Patients?

Can an injured spinal cord be rebuilt? This is the question that drives basic research in the field of spinal cord injury. As investigators try to understand the underlying biological mechanisms that either inhibit or promote new growth in the spinal cord, they are making surprising discoveries, not just about how neurons and their axons grow in the CNS, but also about why they fail to regenerate after injury in the adult CNS. Understanding the cellular and molecular mechanisms involved in both the working and the damaged spinal cord could point the way to therapies that might prevent secondary damage, encourage axons to grow past injured areas, and reconnect vital neural circuits within the spinal cord and CNS.

There has been successful research in a number of fields that may someday help people with spinal cord injuries. Genetic studies have revealed a number of molecules that encourage axon growth in the developing CNS but prevent it in the adult. Research into embryonic and adult stem cell biology has furthered knowledge about how cells communicate with each other.

Basic research has helped describe the mechanisms involved in the mysterious process of apoptosis, in which large groups of seemingly healthy cells self-destruct. New rehabilitation therapies that retrain neural circuits through forced motion and electrical stimulation of muscle groups are helping injured patients regain lost function.

Researchers, many of whom are supported by the National Institute of Neurological Disorders and Stroke (NINDS), are focused on advancing our understanding of the four key principles of spinal cord repair:

Protecting surviving nerve cells from further damage
Replacing damaged nerve cells
Stimulating the regrowth of axons and targeting their connections appropriately
Retraining neural circuits to restore body functions
A spinal cord injury is complex. Repairing it has to take into account all of the different kinds of damage that occur during and after the injury. Because the molecular and cellular environment of the spinal cord is constantly changing from the moment of injury until several weeks or even months later, combination therapies will have to be designed to address specific types of damage at different points in time.

Discoveries in Basic Research

A decade ago, researchers demonstrated a small but significant neuroprotective and anti-inflammatory effect from an adrenal corticosteroid drug called methylprednisolone if it was given within 8 hours of injury. It is the only treatment currently available to limit the extent of spinal cord injury and its risks are relatively low. Researchers continue to search for additional anti-inflammatory treatments that might prove even more effective.

Preliminary clinical trials of another compound, GM-1 ganglioside, indicate that it could be useful in preventing secondary damage in acute spinal cord injury. A large, randomized clinical trial suggested that it might also improve neurological recovery from spinal cord injury during rehabilitation.

These observations and others have led to optimism that recovery can be improved by altering cellular responses immediately after injury. Using what they know about the mechanisms that cause secondary damage - excitotoxicity, inflammation, and cell suicide (apoptosis) - researchers are creating and testing additional neuroprotective therapies to prevent the spread of post-injury damage and preserve surrounding tissue.

Some of the findings in these three different areas follow:

Stopping excitotoxicity
When nerve cells die, they release excessive amounts of a neurotransmitter called glutamate. Since surviving nerve cells also release glutamate as part of their normal communication process, excess glutamate floods the cellular environment, which pushes cells into overdrive and self-destruction. Researchers are investigating compounds that could keep nerve cells from responding to glutamate, potentially minimizing the extent of secondary damage.

Recently, investigators tested agents called receptor antagonists that selectively block a specific type of glutamate receptor that is abundant on oligodendrocytes and neurons. These agents appear to be effective at limiting damage. Some of these receptor antagonists have already been tested in human trials as a therapy for stroke. Similar agents could enter clinical trials within several years for patients with spinal cord injury.

Controlling inflammation

Some time within the first 12 hours after injury, the first wave of immune cells enters the damaged spinal cord to protect it from infection and clean up dead nerve cells. Other types of immune cells enter afterwards. The actions of these immune cells and the messenger molecules they release, called cytokines, are the hallmarks of inflammation in the spinal cord.

Researchers have discovered that these inflammatory processes aren't entirely bad for the injured spinal cord. Although cytokines can be toxic to nerve cells because they stimulate the production of free radicals, nitric oxide, and other inflammatory substances that cause cell death, they also stimulate the production of neurotrophic factors, which are beneficial to cell repair.

Currently researchers are looking for ways to control these immune system cells and the molecules they produce by encouraging their potential for neuroprotection and reining in their neurotoxic effects. One approach being tested clinically is to exploit the ability of the PNS to mount a healing response in macrophages by injecting macrophages already stimulated by injured peripheral nerves into injured spinal cords. Recent experiments have indicated that selectively boosting the T-cell response to spinal cord injury could reduce secondary damage. Because of the possibility that these cells can also damage tissue, they must be very carefully controlled if they are to be used therapeutically.

Clinical investigators are also looking at how cooling the body protects surviving spinal cord tissue and nerve cells. Experiments have shown that cooling the body to a state of mild hypothermia (about 92° F) for several hours immediately following the injury limits damage and promotes functional recovery. Researchers aren't yet sure why mild hypothermia is neuroprotective, but the ability of body temperature to affect many different kinds of physiological mechanisms may be one of the reasons.

Preventing apoptosis

Days to weeks after the initial injury, apoptosis sweeps through oligodendrocytes in damaged and nearby tissue, causing the cells to self-destruct. Although genes have been identified that appear to regulate apoptosis, researchers still don't know enough to be able to specify the exact biochemical events that cause a cell to switch it on - or turn it off. Further studies are aimed at understanding these cellular mechanisms more fully. These studies will provide an opportunity to develop neural protective strategies to combat apoptotic cell death.

By understanding the process of apoptosis, researchers have been able to develop and test apoptosis-inhibiting drugs. In rodent models, animals given a drug that blocks a known apoptotic mechanism retained more ambulatory ability after traumatic spinal cord injury than did untreated animals.

Once the secondary wave of damage ends, the spinal cord is left with areas of scar tissue and fluid-filled gaps, or cysts, that axons can't penetrate or bridge. Unless these areas are reconnected by functioning nerve cells, the spinal cord remains disabled. Discovering how to bridge the gap between functioning axons and figuring out how to encourage axons to grow and make new connections could be the key to spinal cord repair.

Promoting regeneration

Researchers are experimenting with cell grafts transplanted into the injured spinal cord that act as bridges across injured areas to reconnect cut axons, or that supply nerve cells to act as relays. Several types of cells have been studied for their potential to promote regeneration and repair, including Schwann cells, olfactory ensheathing glia, fetal spinal cord cells, and embryonic stem cells. In one group of experiments, investigators have implanted tubes packed with Schwann cells into the damaged spinal cords of rodents and observed axons growing into the tubes.

One of the limitations of cell transplants, however, is that the growth environment within the transplant is so favorable that most axons don't leave and extend into the spinal cord. By using olfactory ensheathing glia cells, which are natural migrators in the PNS, researchers have gotten axons to extend out of the initial transplant region and into the spinal cord. But it remains to be seen whether or not regenerated axons are fully functional.

Fetal spinal cord tissue implants have also yielded success in animal trials, giving rise to new neurons, which, when stimulated by growth-promoting factors (neurotrophins), extend axons that stretch up and down several segments in the spinal cord. Animals treated in these trials have regained some function in their limbs. Some patients with long-term spinal cord injuries have received fetal tissue transplants but the results have been inconclusive. In animal models, these transplants appear to be more effective in the immature spinal cord than in the adult spinal cord.

Stem cells are capable of dividing and yielding almost all the cell types of the body, including those of the spinal cord. Their potential to treat spinal cord injury is being investigated eagerly, but there are many things about stem cells that researchers still need to understand. For example, researchers know there are many different kinds of chemical signals that tell a stem cell what to do. Some of these are internal to the stem cell, but many others are external - within the cellular environment - and will have to be recreated in the transplant region to encourage proper growth and differentiation. Because of the complexities involved in stem cell treatment, researchers expect these kinds of therapies to be possible only after much more research is done.

Researchers are also looking at ways to compensate for axons that, having lost their myelin sheaths, have a decreased ability to conduct the electrical impulses essential for axonal communication. Preliminary studies with compounds known as potassium channel blockers, which block the flow of ions through the demyelinated membrane and increase the potential for messages to get through, have shown some success, but mostly in terms of reducing spasticity in muscles. Further studies might show how remyelinating axons could also improve function.

Stimulating regrowth of axons

Stimulating the regeneration of axons is a key component of spinal cord repair because every axon in the injured spinal cord that can be reconnected increases the chances for recovery of function.

Research on many fronts reveals that getting axons to grow after injury is a complicated task. CNS neurons have the capacity to regenerate, but the environment in the adult spinal cord does not encourage growth. Not only does it lack the growth-promoting molecules that are present in the developing CNS, it also contains substances that actively inhibit axon extension. For axon regeneration to be successful, the environment has to be changed to turn off the inhibitors and turn on the promoters.

Investigators are looking for ways to take advantage of the chemicals that drive or halt axon growth: growth-promoting and growth-inhibiting substances, neurotrophic factors, and guidance molecules.

In the developing CNS, thread-like axons grow and lengthen behind the axonal growth cone, an active tip only a few thousandths of a millimeter in diameter, which interacts with chemical signals that encourage growth and direct movement. But the environment of the adult CNS is hostile to axon growth, primarily because growth-inhibiting proteins are embedded in myelin, the insulating material around axons. These proteins appear to preserve neural circuits in the healthy spinal cord and keep intact axons from growing inappropriately. But when the spinal cord is injured, these proteins prevent regeneration.

At least three growth-inhibitory proteins operating within the axonal tract have been identified. The task of researchers is to understand how these inhibitory proteins do their job, and then discover ways to remove or block them, or change how the growth cone responds to them.

Growth-inhibiting proteins also block the glial scar near the injury site. To get past, an axon has to advance between the tangles of long, branching molecules that form the extracellular matrix. A recent experiment successfully used a bacterial enzyme to clear away this underbrush so that axons could grow.

A treatment that combines both these approaches - turning off growth-inhibiting proteins and using enzymes to clear the way - could create an encouraging environment for axon regeneration. But before trials of such a treatment can be attempted in patients, researchers must be sure that it could be controlled well enough to prevent dangerous miswiring of regenerating axons.

Neurotrophic factors (or neurotrophins) are key nervous system regulatory proteins that prime cells to produce the molecular machinery necessary for growth. Some prevent oligodendrocyte death, others promote axon regrowth and survival, and still others serve multiple functions. Unfortunately, the natural production of neurotrophins in the spinal cord falls instead of rises during the weeks after injury. Researchers have tested whether artificially raising the levels post-injury can enhance regeneration. Some of these investigations have been successful. Infusion pumps and gene therapy techniques have been used to deliver growth factors to injured neurons, but they appear to encourage sprouting more than they stimulate regeneration for long distances.

Axonal growth isn't enough for functional recovery. Axons have to make the proper connections and re-establish functioning synapses. Guidance molecules, proteins that rest on or are released from the surfaces of neurons or glia, act as chemical road signs, beckoning axons to grow in some directions and repelling growth in others.

Supplying a particular combination of guidance molecules or administering compounds that induce surviving cells to produce or use guidance molecules might encourage regeneration. But at the moment, researchers don't understand enough about guidance molecules to know which to supply and when.

Researchers hope that combining these strategies to encourage growth, clear away debris, and target axon connections could reconnect the spinal cord. Of course, all these therapies would have to be provided in the right amounts, in the right places, and at the right times. As researchers learn more and understand more about the intricacies of axon growth and regeneration, combining therapies could become a powerful treatment for spinal cord injury.
Discoveries in Clinical Research

Advances in basic research are also being matched by progress in clinical research, especially in understanding the kinds of physical rehabilitation that work best to restore function. Some of the more promising rehabilitation techniques are helping spinal cord injury patients become more mobile.

Restoring function through neural prostheses and computer interfaces

While basic scientists strive to develop strategies to restore neurological connections between the brain and body of spinal cord injured persons, bioengineers are working to restore functional connections via advanced computer modeling systems and neural prostheses. Discovering ways to integrate devices that could mobilize paralyzed limbs requires a unique interface between electronics technology and neurobiology. A functional electrical stimulation (FES) system is one example of this kind of innovative research.

FES systems use electrical stimulators to control muscles of the legs and arms to encourage functional walking and to stimulate reaching and gripping. Electrodes are taped to the skin over nerves or surgically implanted and then controlled by a computer system under the command of the user. For example, to assist reaching, electrodes can be placed in the shoulder and upper arm and controlled by movements of the opposite shoulder. Through a computer interface, the spinal cord injured person can then trigger hand and arm movements in one arm by shrugging the opposite shoulder.

These systems are useful not just for restoring functional movements. They also help people exercise paralyzed muscle systems, which can provide significant cardiovascular benefits. So far, relatively few people utilize them because the movements are so robotic, they require extensive surgery and electrode placement, and the computer interface systems are still limited. Bioengineers are working to develop more natural interfaces.

Because the brain plans voluntary movements several seconds before the command is sent out to the muscles, people whose spinal cords no longer carry signals to their limbs might still be able to complete the planning phase in their brains but use a robotic device to carry out the command. A recent experiment used microwires implanted in the motor cortex area of the brain (in this case a monkey's brain) to record brain-wave activity, which was then relayed to a computer that analyzed the data, predicted the movement, and sent the command to a robotic arm. A device such as this could be used to control a wheelchair, a prosthetic limb, or even a patient's own arms and legs.

In the future, researchers expect that these kinds of brain-machine interfaces could be planted directly into the brain using microchips that would do the processing and transmit the results without wires. Work is already being done with hybrid neural interfaces, implantable electronic devices with a biological component that encourages cells to integrate into the host nervous system.

Retraining central pattern generators

Scientists have known for years that animals' spinal cords contain networks of neurons called central pattern generators (CPG) that produce rhythmic flexing and extension of the muscles used in walking. They assumed, however, that the bipedal walking of humans was more dependent on voluntary control than on CPG activation. Therefore, scientists thought that without control from the brain, movements produced by a spinal CPG weren't likely to be useful in restoring successful walking without regulation from the brain. Current research is showing, however, that these networks can be retrained after spinal cord injury to restore limited mobility to the legs.

Using a technique called sensory patterned feedback, researchers are attempting to retrain CPG networks in spinal cord injured patients with special programs that break down walking movements into their component patterns and force paralyzed limbs to repeat them over and over again. In one of these programs, the patient is partially supported by a harness above a moving treadmill while a therapist moves the patient's legs in a stepping motion. Other researchers are experimenting with combining body weight support and electrical stimulation with actual walking rather than treadmill training.

Another technique uses an FES bicycle in which electrodes are attached to hamstrings, quadriceps, and gluteal muscles to stimulate the pedaling motion. Several studies have shown that these exercises can improve gait and balance, and increase walking speed. NINDS is currently funding a clinical trial with paraplegic and quadriplegic subjects to test the benefits of partial weight-supported walking.

Relieving pressure through surgery

The timing of surgical decompression (alleviating pressure on the spinal cord from fractured or dislocated vertebrae or disks) is a controversial topic. Animal studies have shown that early decompression can reduce secondary damage, but similar results haven't been reliably reproduced in human trials. Other studies have shown neurological improvement without decompression surgery, which has led some to believe that either avoiding or delaying surgery, and using pharmacologic interventions instead, is a reasonable (and non-invasive) treatment for spinal cord injuries. Additional research is needed to determine if early surgical intervention is sufficiently beneficial to offset the risk of major surgery in acute trauma.

Treating pain

Two thirds of people with spinal cord injury report pain and a third of those rate their pain as severe. Nonetheless, both diagnosis and treatment of post-injury pain still remain a clinical challenge. There is no universally recognized scheme for classifying pain from spinal cord injury, nor is there a uniformly successful medical or surgical treatment to prevent or reduce it. The mainstays of neuropathic pain treatment are antidepressants and anticonvulsants, even though they are not uniformly effective.

Research suggests that spinal cord pain syndromes stem from the spread of secondary damage to spinal cord segments above and below the injury site. Pain can be at the level of the injury or below the level of the injury, even in areas where sensation is limited or absent. Findings indicate that at-level (junctional) pain probably results from damage to grey and white matter one or more segments above the injury site, whereas pain below the injury results from the interruption of axon pathways and the formation of abnormal connections within the spinal cord near the site of injury.

Studies suggest that functional changes in neurons, which make them hyperexcitable, could be a cause of chronic pain syndromes. Consequently, giving more aggressive treatment for spinal cord injury in the first few hours after injury could limit secondary damage and prevent or reduce the development of chronic pain afterwards.

Investigators are currently testing neuroprotective and anti-inflammatory strategies to calm overexcited neurons. Other studies are also looking at pharmacological options, including sodium channel blockers (such as lidocaine and mexiletine), opioids (such as alfentanil and ketamine), and a combination of morphine and clonidine. Drugs that interfere with neurotransmitters involved in pain syndromes, such as glutamate, are also being investigated. Other researchers are exploring the use of genetically engineered cells to deliver pain-relieving neurotransmitters. These treatments appear to alleviate pain in animal models and in preliminary clinical studies with terminally ill cancer patients.

Controlling spasticity

The mechanisms of muscle spasticity after spinal cord injury are not well understood. Recent studies indicate that the loss of particular descending axonal pathways most likely results in the decreased activity of inhibitory interneurons, which causes the overreaction of motor neurons to excitatory stimuli.

Unlike treatments for post-injury pain, medical and surgical treatments for spasticity are established and highly successful. These include oral medications that act within the central nervous system (baclofen and diazepam) and one that acts directly on skeletal muscle (dantrolene). For spasticity that is resistant to drug interventions, surgical rhizotomy or myelotomy is sometimes performed to sever reflex pathways.

Investigators are currently exploring neuromodulation procedures based on preliminary results showing that electrical spinal cord stimulation below the injury can modulate spasms. Other techniques used clinically and experimentally involve implanting pump systems that continuously supply antispasmodic drugs such as baclofen.

Improving bladder control

A promising area of research on treatments for bladder dysfunction involves using electrical stimulation and neuromodulation to achieve bladder control. The current treatment for reflex incontinence includes a surgical procedure that cuts the sacral sensory nerve roots from S2 to S4. With the hope that a cure for spinal cord injury could be imminent, and the reluctance among men to lose any of their already compromised sexual function, few patients are willing to have these nerves cut.

Development of a sacral posterior and anterior root stimulator implant is being explored to better coordinate bladder and sphincter contractions. In preliminary studies people were able to achieve suppression of reflex incontinence and clinically useful increases in bladder volume with the use of the implanted stimulator.

Researchers hope that by combining neuromodulation for reflex incontinence with neurostimulation for bladder emptying, the bladder could be completely controlled without having to cut any sacral sensory nerves.

Understanding changes in sexual and reproductive function

Sperm count in men may or may not change due to spinal cord injury, but sperm motility often does. Researchers are investigating whether or not spinal cord injury causes changes in the chemical composition of semen that make it hostile to sperm viability. Preliminary studies show that the semen of men with spinal cord injury contains abnormally high levels of immunologically active leukocytes, which appear to have a negative impact on sperm motility.

Recent animal studies have revealed what appears to be a neural circuit within the spinal cord that is critical for triggering ejaculation in animal models and may play the same role in humans. Triggering ejaculation by stimulating these cells might be a better option than some of the current, more invasive methods, such as electroejaculation.
The Future of Spinal Cord Research

Fueled by significant federal and private funding, the past decade of spinal cord injury research has produced a wealth of discoveries that are making the repair of injured spinal cords a reachable goal. This is good news for the 10,000 to 12,000 Americans every year who sustain these traumatic injuries.

Because spinal cord injuries happen predominantly to people under the age of 30, the human cost is high. Major improvements in emergency and acute care have improved survival rates but have also increased the numbers of individuals who have to cope with severe disabilities for the rest of their lives. The cost to society, in terms of health care costs, disability payments, and lost income, is disproportionately high compared to other medical conditions.

Considering the biological complexity of spinal cord injury, discovering successful ways to repair injuries and create rehabilitative strategies that significantly reduce disabilities is not an easy task. Researchers, many of them supported by the NINDS, are actively developing innovative research strategies aimed at making the kinds of exciting new discoveries that will translate into better clinical care and better lives for all.

Where can I get more information?
For more information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute's Brain Resources and Information Network (BRAIN) at:

BRAIN
P.O. Box 5801
Bethesda, MD 20824
(800) 352-9424
http://www.ninds.nih.gov
Information also is available from the following organizations:

Christopher and Dana Reeve Foundation
636 Morris Turnpike
Suite 3A
Short Hills, NJ 07078
info@christopherreeve.org
http://www.christopherreeve.orgTel: 973-379-2690 800-225-0292
Fax: 973-912-9433

National Rehabilitation Information Center (NARIC)
8201 Corporate Drive
Suite 600
Landover, MD 20785
naricinfo@heitechservices.com
http://www.naric.comTel: 301-459-5900/301-459-5984 (TTY) 800-346-2742
Fax: 301-562-2401

Miami Project to Cure Paralysis/ Buoniconti Fund
P.O. Box 016960
R-48
Miami, FL 33101-6960
mpinfo@miamiproject.med.miami.edu
http://www.themiamiproject.orgTel: 305-243-6001 800-STANDUP (782-6387)
Fax: 305-243-6017

National Spinal Cord Injury Association
1 Church Street
#600
Rockville, MD 20850
info@spinalcord.org
http://www.spinalcord.orgTel: 800-962-9629
Fax: 866-387-2196

Paralyzed Veterans of America (PVA)
801 18th Street, NW
Washington, DC 20006-3517
info@pva.org
http://www.pva.orgTel: 202-USA-1300 (872-1300) 800-555-9140
Fax: 202-785-4452

Spinal Cord Society
19051 County Highway 1
Fergus Falls, MN 56537
scs-nc@nc.rr.com
http://scsus.org/Tel: 218-739-5252 or 218-739-5261
Fax: 218-739-5262

Clearinghouse on Disability Information
Special Education & Rehabilitative Services Communications & Customer Service Team
550 12th Street, SW, Rm. 5133
Washington, DC 20202-2550
http://www.ed.gov/about/offices/list/osersTel: 202-245-7307 202-205-5637 (TTD)
Fax: 292024507636

National Institute on Disability and Rehabilitation Research (NIDRR)
U.S. Department of Education Office of Special Education and Rehabilitative Services
400 Maryland Ave., S.W.
Washington, DC 20202-7100
http://www.ed.gov/about/offices/list/osers/nidrr
Tel: 202-245-7460 202-245-7316 (TTY)

Glossary

agonist - a drug capable of combining with a receptor and initiating action.

antagonist - a drug that opposes the effects of another by physiological or chemical action or by a competitive mechanism.

apoptosis - also called programmed cell death. A form of cell death in which a programmed sequence of events leads to the elimination of old, unnecessary, and unhealthy cells.

arrhythmia - an abnormal heart rhythm. The heartbeats may be too slow, too rapid, too irregular, or too early.

astrocyte - a type of glial cell responsible for neurotransmission and neuronal metabolism.

autonomic dysreflexia - a potentially dangerous complication of spinal cord injury in which blood pressure rises to dangerous levels. If not treated, autonomic dysreflexia can lead to stroke and possibly death.

axial traction - the application of a mechanical force to stretch the spine; used to relieve pressure by separating vertebral surfaces and stretching soft tissues.

axon - the long, thin extension of a nerve cell that conducts impulses away from the cell body.

axonal growth cone - dynamic structures present at the tip of developing and regenerating axons that respond to chemical cues for growth and direction.

central pattern generators (CPG) - neural circuits that produce self-sustaining patterns of behavior independent of their sensory input. Researchers have found evidence of a locomotor CPG in the spinal cord that synchronizes muscle activity during alternating stepping of the legs and feet.

cervical - the part of the spine in the neck region.

coccygeal - the part of the spine at the bottom of the spinal column, above the buttocks.

cytokine - a small protein released by immune cells that has a specific effect on the interactions between cells, or communications between cells, or on the behavior of cells. dendrite - a short arm-like protuberance from a neuron. Dendrite is from the Greek for "branched like a tree." disc - shortened terminology for an intervertebral disc, a disc-shaped piece of specialized tissue that separates the bones of the spinal column.

electroejaculation - a technique that uses an electric probe to stimulate ejaculation.

embryonic stem cells - undifferentiated cells from the embryo that have the potential to become a wide variety of specialized cell types.

excitotoxicity - a neurological process that is the result of the release of excessive amounts of the neurotransmitter glutamate.

extracellular matrix - the material found around cells composed of structural proteins, specialized proteins, and proteoglycans.

fetal spinal cord cells - cells used by scientists to derive undifferentiated embryonic stem cells for transplant into the damaged spinal cord.

free radicals - highly reactive chemicals that attack molecules and modify their chemical structure.

functional electrical stimulation (FES) - the therapeutic use of low-level electrical current to stimulate muscle movement and restore useful movements such as standing or stepping; also called functional neuromuscular stimulation.

glia -supportive cells in the brain and spinal cord. Glial cells are the most abundant cell types in the central nervous system. There are three types: astrocytes, oligodendrocytes, and microglia. glutamate - an excitatory neurotransmitter.

growth-inhibiting proteins: protein molecules that inhibit axon regeneration.

guidance molecules - molecules that guide axons to their target. Some guidance molecules attract certain axons while repelling others.

hypothermia - abnormally low body temperature.

interneurons - neurons with axons that remain within the spinal cord.

intubation - the process of putting a tube into a hollow organ or passageway, often into the airway.

ligament - a tough band of connective tissue that connects various structures such as two bones.

lumbar - the part of the spine in the middle back, below the thoracic vertebrae and above the sacral vertebrae.

macrophage - a type of white blood cell that engulfs foreign material. Macrophages are key players in the immune response to foreign invaders such as infectious microorganisms Macrophages also release substances that stimulate other cells of the immune system.

methylprednisolone - a steroid drug used to improve recovery from spinal cord injury.

microglia - glial cells that function as part of the immune system in the brain and spinal cord.

monocyte - a white blood cell that has a single nucleus and can engulf foreign material. Monocytes emigrate from blood into the tissues of the body and evolve into macrophages.

myelin - a structure of cell membranes that forms a sheath around axons, insulating them and speeding conduction of nerve impulses.

myelotomy - a surgical procedure that cuts into the spinal cord.

neural prostheses - prosthetic devices that can respond to signals from the brain.

neurogenic pain - generalized pain that results from nervous system malfunction.

neuromodulation - a series of techniques employing electrical stimulation or the administration of medication by means of devices implanted in the body. These techniques allow the treatment of a range of disorders including certain forms of pain, spasticity, tremor, and urinary problems.

neuron - also known as a nerve cell; the structural and functional unit of the nervous system. A neuron consists of a cell body and its processes: an axon and one or more dendrites.

neurostimulation - the act of stimulating neurons with electrical impulses delivered via electrodes attached to the brain.

neurotransmitter - a chemical released from neurons that transmits an impulse to another neuron, muscle, organ, or other tissue.

neurotrophic factors - proteins responsible for the growth and survival of neurons.

neutrophil - a type of white blood cell that engulfs, kills, and digests microorganisms.

oligodendrocyte - a type of nerve cell in the brain and spinal cord that surrounds and insulates axons.

olfactory ensheathing glia - non-myelinating glial cells that ensheath olfactory axons within both the PNS and CNS portions of the primary olfactory pathway. They are being used in experiments to build bridges between damaged areas of the spinal cord.

paralysis - the inability to control movement of a part of the body.

paraplegia - a condition involving complete paralysis of the legs.

pressure sore (also known as a pressure ulcer or bed sore) - a reddened area or open sore caused by unrelieved pressure on the skin over bony areas such as the hip-bone or tailbone.

quadriplegia - a condition involving complete paralysis of the legs and partial or complete paralysis of the arms.

receptor - a structure on the surface or interior of a cell that selectively receives and binds to a specific substance.

regeneration - repair, regrowth, or restoration of tissues; opposite of degeneration.

rhizotomy - an operation to disconnect specific nerve roots in order to stop severe spasticity.

sacral - refers to the part of the spine in the hip area.

Schwann cell - the cell of the peripheral nervous system that forms the myelin sheath.

spasticity - increased tone in muscles of the arms and legs (due to lesions of the upper motor neurons).

spinal shock - a temporary physiological state that can occur after a spinal cord injury in which all sensory, motor, and sympathetic functions of the nervous system are lost below the level of injury. Spinal shock can lower blood pressure to dangerous levels and cause temporary paralysis.

stem cell - special cells that have the ability to grow into any one of the body's more than 200 cell types. Unlike mature cells, which are permanently committed to their fate, stem cells can both renew themselves and create cells of other tissues.

synapse - a specialized junction between two nerve cells. At the synapse, a neuron releases neurotransmitters that diffuse across the gap and activate receptors situated on the target cell.

T-cell - an immune system cell that produces substances called cytokines, which stimulate the immune response. thoracic - the part of the spine at the upper-back to mid-back level.

vertebrae - the 33 hollow bones that make up the spine.

"Spinal Cord Injury: Hope Through Research," NINDS. Publication date August 2003.

NIH Publication No. 03-160

Scott W. Fedor

2011-09-09T18:39:00.000-07:00

This is another post from our friend Scott Fedor's site. Click here to go directly to Scott's site. In the following post, Scott starts off talking about his week and then turns the direction to spinal cord injury. Scott is living the life of a high-injury after being a very active, successful person. Here's the post...

Friday – 9/09/2011“Nobody made a greater mistake than he who did nothing because he could only do a little.”

It’s obvious that the early signs of Fall have started to permeate my surroundings. There’s been a change in the weather that unfortunately has lent itself to a change in my physical being. As a result of being unable to regulate my temperature the same way I used to before my accident, I find myself more affected by subtle changes in the atmosphere. The temperatures have begun to drop and in turn, my spasms have increased significantly. And these are not just a few muscle tremors, but rather violent shakes that wiggle me out of position in my chair. Not to mention, I seem much more lethargic than I do on the sunny days. However, if the forecast holds true, the sun should be shining again in a few days. Although, you know how I feel about weather forecasts…

I’m sure that some of my tiredness can be attributed to the events of the past week. My good friend, Eric, was in town last week and stayed with me at my apartment. We watched a lot of movies, drank a lot of wine, ate a lot of great food and had a great time hanging out. There were a few adventurous trips to the movies, grocery stores and clothing stores that nearly saw me break my neck again. I’ll spare you the scary details, but let me just say I am thankful my wheelchair comes equipped with a seatbelt!

The week was broken up with visits from both of my father’s sisters. My Aunt MaryAnn and Uncle Fred stopped by along with my cousins, Andrea and Deanna, to catch up and have lunch together (I had my favorite corned beef sandwich from Corky and Lenny’s!). Deanna brought her two-year-old daughter, Estelle, who of course had a fun time playing with the cats. Two days later, my Aunt Chrissy and Uncle Steve came over for a visit and brought with them some strawberry ice cream from Mitchell’s, a local favorite! They also brought along, Ruby, their young Boston Terrier, who was very entertaining to watch as he terrorized, Horatio, one of the cats, who at one point found himself 8 feet in the air after jumping to avoid Ruby. Very entertaining, indeed!

Katie stopped by with Communion for me on Sunday. Tagging along with her were, Maura and Sean, who are also very big fans of Horatio and LG. Katie stopped by again earlier today with Maura and her older son, Marty. In my opinion, Maura is the world’s perfect feline babysitter. She turns 9 tomorrow and I’m sure would want nothing more than a cat for her birthday. I told her I think she comes to visit me just to see the cats, but she assured me that is not the case. She also informed me that even though she is a year older she promises not to be “too cool” to continue visiting with me. Her father, Dan, is a teacher at my alma mater, St. Ignatius high school, where I have been asked. to speak to the freshman class of 350 students on September 23 as part of their Spirit Day. I’m excited to be able to participate and share my story and journey of faith with them. It’s amazing to think that 20 years ago I was a freshman myself and in the same position. Another reminder of how quickly life passes by.

I had the opportunity to try out a MotoMed FES bike at the SCI Forum a few weeks ago. The salesman promised me he would drop off a demo unit for me to use in my apartment for a few weeks. True to his promise, the bike arrived last Friday, and I’ve been able to cycle for about 30 to 40 minutes every day! It is a really cool feeling to see my legs moving again. “Really cool” is about the only way to describe it. As I watch my legs cycle, I try to connect the motion with my brain. Hopefully, over time, the repetitiveness of this action will pay dividends. I realize the odds are against me with a complete injury, but I plan to keep at it. Not to mention the cardiovascular and muscular benefits cycling will provide. This morning my friend Chris invited me over to his fitness facility, Buckeye Wellness Center, to check out the place. I had the opportunity to hop on another similar FES bike. This also allowed me the chance to compare the two bikes and decide which piece of equipment to purchase. In case you’re interested in understanding how these bikes work, check out the following video:

http://www.youtube.com/watch?v=TqCedM0lexg&feature=share
As I mentioned in my previous post, September is National Spinal Cord Injury Awareness month. While 30 days of focusing on spinal cord injuries is a start, it does not even begin to scratch the surface in raising the appropriate awareness needed to help those living with an SCI achieve a more enriched life. More research, more funding, more awareness and more advocating is needed now more than ever. Every 45 minutes someone in this country suffers a spinal cord injury, and in a fraction of a second his or her life will dramatically change forever. And the changes are severe – physically, emotionally, mentally, spiritually and even financially. The individual’s entire life will take on a new purpose and in many cases the rest of his or her days will be spent working tirelessly just to be “comfortable”. Hopefully it is a change none of you will ever have to experience for yourself.

However, the reality is that most of you know someone, other than myself, who has suffered such an injury. Or you might know someone who knows someone living with an SCI. These injuries seem to be all around us, yet not enough is being done to help those living with such an injury. So much more help is needed! Most of us living with an SCI believe in our own strength in the strength of others living with a similar injury. We believe in the foundations in place to help find a cure and the dedicated researchers and therapists they support. We believe in our friends and family and their ability to help support us whether it’s through their prayers, donations or other efforts.

It’s amazing to stop and think about the progress that has been made in the area of SCI research. A few weeks ago I posted about, Rob Summers, the 25-year-old man who was paralyzed from the chest down and can now stand and walk with the help of an FES device. Furthermore, he has regained voluntary movement in his toes, ankles, knees and hips without any assistance needed. His incredible story, and the untold stories of so many others, are a direct result of the SCI support in place today. And yet, it is still not enough. There is a lot more work to do before the full potential of SCI research, and potentially a cure, can be realized.

We live in tough economic times today. Not all of us are in a position to be able to donate to the foundations and individuals who need our support. However, we are all able to help spread the word regarding the need for more SCI awareness, research and funding. God has blessed us with a voice, and our ability to use that voice doesn’t cost us a dime. Take a moment to imagine what your life would be like if you were living with an SCI. Now, think about those people you know who are living with that reality.

Take this moment, this time, this “right now” to help improve the lives of those you know living with a devastating spinal cord injury. You can do this by spreading the word. Whether you “Tweet”, use Facebook, send an e-mail, make a phone call or just have a conversation with someone, you have the ability to inform others about National Spinal Cord Injury Awareness month. You have the opportunity before you to urge others to help support this cause in whatever manner they see fit. And I assure you, you have the utmost gratitude and appreciation of us individuals you are helping to support! And the best part is you’ll feel great about doing it!

Thank You.

Finally, don’t forget to take a moment this weekend to reflect on the events that rattled our country 10 years ago. Give thanks and prayer for all the individuals who have worked to make us safer over the past decade.

Stand Strong!

Scott

2011-09-09T18:00:00.000-07:00

True prosperity can not be added up....but it can be deeply felt in the heart...

I.P.V. Intrapercussive Ventilation

2011-09-08T16:42:00.000-07:00

The following video is not as directly aimed at spinal cord injury but it is a device that I use on my son Alex as he needs it. This video will totally bore most people but I found it today and was so excited. In my world, I never worked in the health care field prior to my son's injury so when I see the medical stuff that we have being shared to help others that deal with it at home, I get excited. The internet can be such a useful resource. The I.P.V. is an old machine but a good, effective machine.

Click hereto learn more about this device.

Please note that I am not a health care professional nor am I qualified to give any type of advice. This piece of equipment is just something we use and I thought it might be helpful to let others know about some options that are out there. Many doctors and therapists do not know of some of the devices that are available.

Neurological Curve

2011-09-07T18:49:00.001-07:00

One of the cruel things that can happen when it is a child who receives a high spinal cord injury is something called a neurological curve. Simply, when the injury is high the muscles that usually work to keep the body erect as it grows do not work so the spine has nothing to hold it up. As the child grows the spine literally collapses down inside their growing body. My son ALex took a growth spurt in 2009. I could see the curve increasing in his back and was so frustrated that there seemed to be nothing I could do to stop it. He wore a torso vest(a hard shell worn around the torso) to try to slow the rate of the curve but in 2009 his spine just collapsed! His curve was at 50 degrees in February of 2009 and by October it was at 90 degrees. He was miserable! The only saving part of a neurological curve versus a true scoliosis curve is that that neuro curve is more pliable which it makes it more correctable. ALex's curve was able to be straightened pretty good but boy did his neurological system go crazy!

F.E.S. bike

2011-09-06T19:54:00.000-07:00

The following video shows a computer animation of the F.E.S. bike like my son Alex has. Alex has unfortunately been unable to ride his bike lately due to some breathing troubles, but he is anxious to start riding it again soon. Someone donated the bike to us two years ago but Alex was not able to ride it until recently. He was up to about ten minutes and was really working hard! This bike is so cool!!!

Question

2011-09-05T19:35:00.001-07:00

There are those that are willing to do the work required of the journey and others who will try to capitalize on the effort and pain of others while sitting on the sidelines...which one are you?

Rainbow Babies and Children's Hospital in Cleveland, Ohio

2011-09-05T19:19:00.000-07:00

This is where I take my son ALex now. We love it at RBC!! The staff there really listen and try to work with you and take care of you. They understand that is is not only the patient that needs cared for when dealing with a chronic condition. This is my own promotion of RBC.

"Dancing with Max" by Emily Colson

2011-09-05T18:53:00.000-07:00

I just finished this book this past week....loved it!!

2011-09-05T18:21:00.001-07:00

"True prosperity can not be added up...but it can be deeply felt in the heart.."

Matt Courson

2011-09-05T18:13:00.001-07:00

Question

2011-09-04T14:57:00.000-07:00

Is our desire to get to heaven because of the splendor and majesty of it, or is it because we get to spend eternity with the One who created it???

Brock Mealer

2011-09-04T14:50:00.000-07:00

Brock is an example of what faith in what God is more than able to do and not sitting idly by can accomplish..."Nothing is impossible with God" Matthew 19:26

"Walking Proof"...Patrick Rummerfield

2011-09-03T15:00:00.000-07:00

The following is a video that I have shared before. The video is about our friend Pat Rummerfield. Pat is "walking proof" that recovery from spinal cord injury does happen!

Kirk Cousins Kickoff Lucheon Speech

2011-09-02T16:13:00.000-07:00

Put this one under a random post but one worth listening to. This speech from a young man should be passed on and shared. He speech is about privilege vs. entitlement. WOW!!

2011-09-02T14:58:00.000-07:00

"If God gives you a stoney path, expect that he will give you some sturdy shoes."...unknown

New Mobility: The magazine for active wheelchair users

2011-09-02T14:56:00.000-07:00

This is a link to a great article about another kind of treatment for those with spinal cord injuries.

New Mobility: The magazine for active wheelchair users

Worldly Prosperity

2011-09-02T11:41:00.000-07:00

This is a strong message but I believe a "true" message. WE have become a nation that is looking at the what God can give us and do for us instead of the who God is! WE are even taking His miracles and exploiting them for worldly prosperity....one day God will say ENOUGH!

National Spinal Cord Awareness Month

2011-09-01T16:07:00.000-07:00

Since the month of September has been designated as National Spinal Cord Injury Awareness month, I thought I would try to put up something different every day. Spinal cord injuries are devastating and life-altering. The higher the injury, the more complicated and unknown the territory. Click here to read an article written on a little girl named Morgan Dunigan. I do not like to attempt to tell another person's story so I will just suggest you read the piece. There are so few places that truly know(some can make you think they know) how to deal with pediatric spinal cord injuries. Kennedy Krieger Institute in Baltimore, Maryland is one of those places. That is where Morgan went.
SO many so-called rehab places(adolescent or adult) are still stuck in the mindset that once you are injured, that is it...Not so my friend!!! There is so much hope in the world of paralysis...it is just up to God when He chooses to let man in on a bit more information:)Until then, please consider reading this article about Morgan and investigating the area of SCI(spinal cord injury)...many are happening, many are surviving, and many need your help...an an instant you or someone you know could be come injured!

From our friend Scott's site...

2011-08-30T16:01:00.000-07:00

I asked our friend Scott Fedor if I could share the following post from his website. Of course he said yes for his desire is to help others anyway that he can. Scott has become a great buddy to my son ALex and an ispiration to many. Thanks Scott. Here's the post.....

“Act as if what you do makes a difference. It does.”
What an appropriate quote by former psychologist/psychiatrist/physician, William James, to kick off the month of September! By the end of having read this journal entry you’ll understand why.

Many of the highlights of my career at Calphalon/Newell Rubbermaid centered around the annual Leadership Conferences I attended with all my fellow managers. Kristie, president at the time, would work with the Executive Team, to create a powerful off-site event that served a dual purpose as a strategic planning session, as well as a team-building and camaraderie junket. The event usually culminated with some type of impactful take away lesson. I vividly remember one such conference that was hosted in Virginia, in which inspiring entrepreneur, Seth Godin, was brought in to speak to the team.

What made this presentation particularly memorable, was not the fact that before he spoke, Seth had inadvertently left his microphone on while seeking one last trip to the restroom, but the content that comprise his message. Since that conference, I often take a moment to read updates I may come across that feature Seth and his messages. I want to build off of one of his recent posts entitled, You Matter, and couple that with another blog posted on Tiny Buddha.

“When you show up for the people in your life, even though you’re having a hard day, you make a difference. When you share what you’re dealing with, even though it makes you feel vulnerable, and help other people through your honesty, you make a difference. When you practice what you preach, you make a difference.

“When you honor your needs to create a sense of inner calm and well-being that permeates your interactions with others, you make a difference. When you cut yourself some slack so you can use your energy to love, create and inspire love, you make a difference. When you give people the benefit of the doubt, you make a difference.

“When you listen fully, instead of waiting to talk, you make a difference. When you focus more on being kind than being right, you make a difference. When you find beauty in the world around you and help other people see it, you make a difference. When you realize that your everyday actions are your greatest legacy, you make a difference.”

I will be the first person to admit that I often have a challenge when it comes to living out the messages I sometimes post. However, it’s not the failure of practicing a lesson that defines us, rather, it’s the sin of failing to get back up and try again that will forever haunt us.

So in the spirit of striving to make a difference, I have a challenge for anyone reading this. The Miami Project to Cure Paralysis recently reported some exciting news regarding SCI’s.

“Recognizing the devastating effects of sustaining a spinal cord injury, the United States Senate has declared September as National Spinal Cord Injury Awareness Month. This Resolution, sponsored by Senators Marco Rubio (R-FL) and Bill Nelson (D-FL), sends a strong message across the country that new therapies and resources need to be advanced to find a cure for paralysis.    “In addition, the resolution honors the individuals and family members who have sustained a spinal cord injury and the dedication of local, regional, and national organizations, as well as researchers, doctors and volunteers across the country who are working to improve the lives of individuals living with paralysis every day.   ’Over the years, improved research and public awareness efforts have helped us come a long way in treating and preventing spinal cord injuries. The inspiring work of The Miami Project to Cure Paralysis has touched the lives of millions of young athletes, accident victims and troops in harm’s way, and I commend them for it. By designating September as National Spinal Cord Injury Awareness Month, I hope we can further educate the public about how crippling accidents can be prevented while promoting the important work being done to help victims walk again,’ said Senator Rubio.”
Seeing the action being taken by our elected officials is very exciting and rewarding for all of us living with paralysis. It is my hope that other lawmakers will take notice of the Florida Senators’ actions and also choose to get involved. This is a great example of our constituents making a difference.
Now comes the opportunity for all of you to also make a difference. Please help spread the message that September Is National Spinal Cord Injury Awareness month and make a donation to honor that special person in your life who is paralyzed, a caregiver, or the dedicated organizations working to improve the lives of those injured.

My continued thanks to everyone for your prayers and support! Remember, “Act as if what you do makes a difference. It does.” Stand strong!

Scott

ALex update...Grrr....

2011-08-29T15:05:00.001-07:00

Hello all,

I just wanted to send out a quick update. ALex is sick again...GRRRRR...yep, I knowI do not know he seems to get sick so much easier and more frequently, but he is. I have him on oxygen and have since early yesterday. We have been using our breathing machines..yes, that is plural...but now I have broken down and started using a breathing medicine as well.(for those that know me and know alex...I hate medicine and medicine and ALex do not mix well) As it always is with ALex, he can not just do the typical thing, he has to take a medicine different than the usual one used to open airways...ALbuterol. ALex can not tolerate Albuterol...it causes his heart rate to go to 180 or above and stay up there for hours. We are trying a different medicine called Xopenx. I will spare you the details in the mix up of getting the correct med but I will say that we have a awesome doctors!!!! Both ALex's doc in Cleveland and his pediatrician know how sensitive ALex is to medicine and they do not play with it!!! ALex has an EXTREME sensitivity to medicine. Anyhow...he is up in his chair, after the breathing treatment with medicine he feels better but he is needing a good amount of oxygen to keep his breathing comfortable. For those reading this and understand the numbers....ALex is on about 3 liters of O2 from a concentrator and his sat is still only around 93(that is up in his chair)...his heart rate is not bad considering how hard is body is working. He does not have a temperature but never does...he runs cooler unless you bundle him in bed then he steams up and freaks people out. I also had to turn up the amount the ventilator is working....I can do that and have had to learn how to so I do not need a doctor to ok it.. When I had nurses in my home, they were not allowed to touch the dials unless they had a doctor's order. See the benefit of being unschooled in this areaWell not schooled in the classroom.

The good news is that we are still home, ALex is up, and he is reading outside with a blanket on because it is cool(his friend suggested the air and sun...thanks Scott). ALex has not eaten much today but that was more due to him struggling to breath while he was trying to chomp and swallow.

Thank you all for your continued prayers, they are welcomed and needed!!! Oh yea, and the first official day of school was today...scattered teaching day for sure!!!!

Blessings,

Beth

Reading time!!!

2011-08-28T16:12:00.000-07:00

My other three went off to play at some one's house...ALex is still on oxygen but not had any major episodes. His breathing is still tough...tough enough that he can not use his mouth mouse to get on the computer:( But....he can read!!! He and I have been reading for several hours!!! I started reading a fantastic book called "Dancing with Max" It is about a mother's journey with her son who has autism.
Many people have the mind-set that these chronic journeys are a burden...oh no my friend...these journeys are a gift. Journeys where compassion and passion can be birthed that can radically touch a whole group of the "left-outs"....the "set-asides". There are too many hurting people in the world that society does not know quite how to handle so setting them to the side is easier...NOT!!!!!
I remember one time I heard about he loss of a little girl who had a severe heart condition. The person telling me asked me how I thought the mom and dad might feel...that is when, before I had a chance to respond, another person in the background blurted out, "I know..relieved"..I just pray for that person! Losing a child is never a relief or release. We may be relieved that their frail bodies are released from the struggle but relief for ourselves...as if caring for a child was a burden we needed released from....how very sad. Each and every precious child is a gift from our maker. Each and every child is unique and special. Each and every child is a blessing....God never guaranteed a "perfect" child. We should consider ourselves blessed if we are entrusted with a tender creation of his...I do!!!

Grrr.....

2011-08-28T10:25:00.000-07:00

My precious ALex was so tired yesterday after struggling through the day and then he could not sleep!!!!! He is really struggling now ...his breathing is horrible and he is so tired. Tired with most of us can mean grumpy or just a bit off, but tired with ALex can send him into crisis. Grrr......

It's been one of those days...

2011-08-27T15:10:00.000-07:00

Anyone who is involved with a chronic situation(one that is ongoing,)knows that there are many stories to be told. Some of the stories may be funny, some sad, or some are in between. I say this is an inbetweener.
I will give you a peek into a day in the life of....My son ALex's system is super sensitive. I mean SUPER SENSITIVE!!!! The weather can make his lungs scream,"What is going on?" It can also make it difficult to determine whether he is sick or the weather is just going to be doing something funky. This past week the weather was all over the place. Alex and I slept very little(If ALex is up struggling..I am up trying to help him). ALex's lungs were needing cleared frequently. After the third night in a row of little sleep, I put a call into his doctor to try to brainstorm. The doctor did not get back to me. I am guessing he probably did not get the message. On Thursday were supposed to go to Cleveland for a doctor's appointment. ALex and I usually go by ourselves but this time my daughter, Grace, who is 8, was going to take the road trip with us. She was so excited, but then, due to ALex's breathing issues, we had to delay the trip...BUMMER!!!!
Here comes the in-betweener day.... my son Aaron, who is 11, was going to have his first football scrimmage today. Alex, Grace, and I were at first going to miss it because of the doctor's appointment, but then because we had to cancel the appointment, we were all excited to go to Aaron's scrimmage instead. ALex woke up this morning after sleeping well and then the fun began....his lungs were going crazy. I had to clear his lungs at least twenty times...that is alot! We were both so frustrated but thought we would still try to go to the scrimmage. Aaron and Daddy were already gone....I loaded ALex on the van where Grace and Ryan(6) were waiting. We did not get far before ALex thought he had an accident and needed changed. I finished taking Grace and Ryan to the scrimmage and had to quickly get ALex back home to change him. Can you imagine the disappointmen??? ALex loves football and was so excited to get to watch Aaron....not today!!! He and I came home, got him changed and then his breathing started again...GRRRRRR....finally, about 6 p.m., Alex got to go outside and breath! OH, did I mention, I had to call the pharmacy and doctor to try to figure out a mistake that was made in a medicine order. The doctor in Cleveland knows how sensitive ALex is and ordered a particular breathing medicine to try to help ALex but the insurance would not pay for that particualr med. The pharmacy did the correct thing by calling the doctor's office to try to solve the issue but a nurse that does not know ALex, changed the med....not good!!!Our doc in Cleveland is going to talk to the nurse:) Now the medicine will have to be paid for out-of-pocket and will not be in until at least MOnday. WE are prepared to go to the local ER for a breathing treatment if we have to but I am praying that we do not need to. It is almost 9 p.m., ALex is resting comfortably..well fairly comfortable, and I am getting to write. WHew!!!! Did't I mention that dealing with high-level injuries can be challenging:)

2011-08-26T20:39:00.000-07:00

We are never guaranteed of how many moments will have so we should make the most with each one that we are given.

"A New Day" by the Miami Project to cure Paralysis

2011-08-26T19:48:00.000-07:00

I was sent the following video a few days ago. I do not know how I missed this one. When my son ALex was injured in 2004, it was so hard to find anyone to connect with that dealt with a c2 or above injury(ALex's injury is above c1). Now with the Internet and Facebook, I have been able to connect with many others who deal with spinal cord injuries. I think most people do not realize the number of individuals that are injured nor the amount of hope that is out there. Much research is being done and people have and are recovering. There is a long way to go and the journey is not easy at all but there is hope!!! I cried throughout most of this video for I know the pain behind the scenes. I know the pain of watching your loved one struggle(in my case, a child). I also know though the tremendous spirit of the people I have met. We try to connect and help each other with encouragement and support. We also try to reach out and connect with those who get thrust onto this road less traveled.
If you come upon this blog and have a loved one who is injured, are injured yourself, or going through those beginning days, weeks, months post injury...feel free to connect with me on fb...Beth Nachman Malarkey...God bless you....this road is tough...you will get broken....but the good news is that you can be remade into a more compassionate, caring, and stronger human being.

It doesn't affect me right?

2011-08-25T19:48:00.000-07:00

I wrote part of the following entry very early on on this blog. I thought this particular subject was worthy of addressing again. .....
In a second your life could change. We often move along through this life not really grasping how quickly you too could be in a position of deep need. We hear alot of numbers (statistics) tossed around (i.e. # of people diagnosed with a form of cancer ever day, the number of deaths just in your town daily, the number of injuries, illnesses.....). Numbers are just numbers that alot of people can walk away from because it REALLY does not affect me right?? Here are some examples from my own life about how in a second life can take a drastic change.
My father went to the work one July night in 1970 just 14 days shy of my 6th birthday. My father died that night of a heart attack. My mother was suddenly a young widow with three children ages 9,7, and not quite 6.
Night phone calls at our house growing up usually meant someone else was sick or had passed on.
My son Alex woke up bouncing around on Sunday November 14, 2004, played with his 4-year-old brother, left with his daddy to go to church...car accident. I was at home with my three other children(ages 4,2,and 3-days old).
In the more recent year, I have met many more individuals who have experienced the "in an instant" experience. If you are one of them, you know the gut-punch that you can receive and you will never forget where you were when you received it.

A dx, situation, injury is only rare until it happens to you. We are all aging and it is almost guaranteed that at some point in your life you will have an event that will be life changing or at the very least, life-altering.
Should we live in fear...NO! there is a reality though that exists that things do happen and all around you, right now, people are in need. The need doesn't have to be something medical. There could be a single mom near-by that does not know how to ask for help. There may be an abused mom needing someone to dare to reach in and ask her how they can help....even if it is just to listen.
We have become a society that just walks on by. "I need to deal with my own stuff", we say. We need to step out of our own comfort zone....maybe even give up some free time or money....not just walk by or turn away from the hurting. Remember that person in need may "in an instant" be you. Then it will affect you right?

F.Y.I.

2011-08-22T13:45:00.000-07:00

I need to make sure that this is public knowledge...I do not attend Christ Our King church in Bellefontaine, Ohio nor does my son ALex. We stopped attending that church in October of 2009 and will not be attending it again. I got a weird piece of mail today. Our home address is currently accessible and do to an enormous amount of unwanted publicity, we have received strange phone calls and mail. It is time to stop!

Not Alone....

2011-08-16T15:05:00.000-07:00

When my son ALex got injured, it seemed like it was so hard to find anyone else to connect with that had or took care of someone with a c2 or above spinal cord injury(ALex is actually above c1). ALex also was so young(only six) and had a traumatic brain injury too. WOW, how on our own we were. Here comes the internet..yahoo...WOW is it different today. I stayed away from facebook for a long time and then finally gave it a whirl. Suddenly connections starting occurring. It was so cool. The population of individuals with c2 and above injuries is a small percentage, (for kids the percentage is even lower), but they are there. WE have all started to find each other and when one ends up in the hospital...man, we are there! WE know the journey. Many of the particulars can be different but there is much that is way too familiar. The roller coaster ride.....one moment the individual can be fine and the next...TRAUMA!!! Medical personal that have even seen a high-level injury let alone understand anything about it are the normal. If something happens, you need to be educated yourself and prepared to educate the doctors and staff when you go to the hospital. Finding a doctor that is very broad minded and willing to reach beyond their borders for answers is a treasure to be shared. We now, after almost seven years, have a medical team that listens, is willing to learn, and most of all, realize that these high-level injuries do not fit any neatly defined molds. Each one is so different and present so many unknowns. Alex's body, for instance, does the most dramatic things...here's an example...the other night he got bit by a bug....just a little bug but on ALex drama is the name of the game. After he got bit, he seemed ok until about two hours later when the area around his eye just started to swell. I have seen it before on his leg so I was not too alarmed. I wanted to give him some benadryl except I know what benadryl does to me, and ALex's body reacts very strongly to medicine. We skipped the benadryl. (one time in the hospital they thought he went into a coma after a regular dose of Tylenol with codeine...yea drama) The doctors in Cleveland and our pediatrician, realize the medicine reactions that ALex can have and they do not take chances.
SO back to the connecting part.... those of us that are either injured or care for someone with an injury, connecting and networking can be so helpful. When I recently had to take ALex to Cleveland I thought he might be having seizures(we have not had to deal with those so far), ALex was resting, it was 4:30 in the morning, my back hurt from riding in the back of the bumpy ambulance when I had not slept(grumble, grumble)....hey, I had my smart phone...I got online and found my new friend who had just been talking to me earlier in the evening. She has adopted a little guy with a very high injury. She told me she gets up at 1:30 and 4:30...good timing. She chatted with me via texting. She knows the journey....she knows the feelings...we get home a few days later only to find that her little guy had to get rushed to the hospital...that is when my phone died so I could not contact her...GRRRRRR!!!!! These journeys break you and then remake you so we can survive without conversation but it sure does feel good to know someone else is there who truly understands. God is so cool how He does not waste any tear or pain...He can use it all...He does not like it all but He can use it for good!!!! I pray that you never have to deal with a high-level spinal cord injury or traumatic brain injury, but if you do or know of someone how is...you and they are not alone...we are here ready to chat, connect, and support in any way we can. New injuries are occurring and surviving more than ever.

ALex Update

2011-08-10T20:13:00.000-07:00

Hello all,

As summer is winding down, and I know how many of you faithfully pray for my children and family as a whole, I thought I would send an update.

Summer 2011 has certainly been much different then summer of 2010. Last year ALex was bed-bound...yuck!!! This year ALex has been so much healthier. I even started putting him on the electrical stim bike that we had but could not use for two years!! This summer I have been able to take the kids to a beach at Indian Lake a few times. Overall the summer has been pretty good. ALex is now a teenager so he drives his chair a bit crazier, so much crazier that his battery trailer had to be tweeked to make it a bit more durable.....that's a good thing

So then comes this past weekend....August 6, 7, and 8...yea...the drama of high-level injuries. ON Thursday of last week, ALex woke up with a junky eye. Someone in our house had a weird cold and ALex seemed to have got it. ALex had the junky eye and sore throat. It seems like no big deal but with ALex's body what is a "no biggie" to you and me can spell big trouble for him. On Saturday, ALex started to need suctioned more...he had some junk in his lungs. That was not such a big deal but his coloring was. ALex was so pale. I kept watch on him but as the day went on his coloring and need for suctioning got worse. By evening, ALex was getting a grayish tint ( his coloring can vary so much but is always an indicator of what is going on with his body). Well gray means tired and tired he was. ALex asked to get in bed. Then the drama began. He started to struggle more with his respiratory system and he started to shake. It was so odd. ALex will spasm(involuntary muscle movement) but this was more like tremors. He was still alert but it was concerning. ALex has barely eaten over the past two days so I knew he was very sick. I was debating whether to call the doctor or not but as things just kept getting worse and the night was getting later(midnight), I knew that I not only needed to call, but we needed to go to the hospital. ALex was not happy nor were any of us. It is especially hard when you go late at night for it means no sleep. I went to make the phone call to get transportion and then suddenly ALex's eyes rolled back into his head and he was out. I have seen ALex pass out a lot. I have seen his eyes roll back and they thought he went into a coma. He has been in a coma. Bottom line...I have seen alot but this was a new thing. He would come out of it a bit just to go right back out. Sometimes when he would come out he would say how bad his head hurt. That one scares me for I know too many individuals that have passed on due to brain bleeds which were found after the individual had expressed how bad their head hurt.. I tried to call ALex's doc to get the copter here but I could not reach her.(yes she is better than 911 for she gets the copter out fast)). I could not reach her so I called 911. I had a pulse ox(measures the oxygen level and heart rate) on ALex so I could monitor his vitals. ALex already has an airway established and was getting ventilated so I knew that was all ok. The 911 operator asked me if I was doing CPR and I was able to tell him what ALex's oxygen levels and heart rate were(an advantage to ALex's situation but not an advantage you want to have ). The ambulance came and we were out the door. No time for hugs and kisses this time.....that is hard!!!!!!!!! My other three had no idea what was going on this time. ALex continued to go in and out. When we got him on the ambulance, they gave him a shot of Valium in his rear-end and he woke up. WE went to the local E.R. to wait for transport and waited because ALex at that point was stable. The helicopters were not flying that night due to weather...grrr....that would mean a three hour ambulance ride. I really appreciate the helicopters(though I do not like riding on them). The time they save can mean life or death. Of course I was in Alex's face praying over him and to him. God knows the days He has made for us.

We waited at the local hospital and did not get to Cleveland until about 6 or 7 in the morning. I was able to make calls in the squad to update some people. WE got to Cleveland, had to go through their E.R.(we have never done that but that night the communication that usually occurs had not)and finally got to PICU about 9:30 A.M....long night. ALex was having breathing problems but he did not go out again..whooo....They ran a bunch of tests, I talked to the neurology team, they put him on an antibiotic, and Monday we came home. The lowdown is that ALex got sick and no one is quite sure what happened to him. They can not conclude that it was a seizure or if it was his autonomic system doing one of it's dramatic things that it can do. That is the crazy thing about an injury like Alex's, there are many unknowns. Thank goodness God knows and we can call upon HIm to guide us and direct us. Thank goodness God is always there to comfort us and calm us. I do not know how anyone makes it without a faith in God.

SO we are home. Alex is on an antibiotic and still recouping but looks a ton better. I forgot...he had almost completely lost his voice too and that is coming back. Today, ALex got outside and drove his chair like a crazy teenager so I know he feels better

This moms wants to express her deepest thanks to ALL of you who pray and plead on our behalf. These four children our on a journey that is so much different than I know I experienced when I grew up. These four children our so precious to me and I NEVER want them to feel that ANY of them are more impoortant than another. Each of them experience things and need prayer. These chronic journeys have a lot of twists and turns. Talking to God about us and for us means so much. God is the One with ALL the answers. THANK YOU!!!!

I do not know when I will post again but wanted to make sure I got something out. I know how hard sitting and waiting for news can be.

Blessings to you all,

Beth

School starts soon...where does the summer go??????

Thought.....

2011-08-02T16:54:00.000-07:00

Yesterday I had to bury the second barn cat in about a week. It is so hard to watch any living thing suffer or die. So I am digging the hole and the thought started to enter my mind about how hard it is to bury something but yet I was doing it. It is funny how many things that I do now would have just overwhelmed me before. A single tick on one of my children's heads before would have freaked me out, now I just get the tweezers:-) If one of my children falls, I look for blood and ask if they can move(the reality)....then of course I hug them. What is interesting though, is that dealing with the life and death medical stuff that is a reality when you care for someone with a very high-level spinal cord injury/brain injury, is not what challenges me as much any more. What challenges me more is how some people can be so cruel to others, especially the weak and vulnerable(going through a major trauma can place someone as a prime target). I have experienced individuals that have actually stood in front of my son(who is on a ventilator and unable to even move his head much on his own) when he was struggling to breath, check their watch, and say they needed to go....they had a party to go to. I have observed how there truly are individuals who will seek out the vulnerable and the weak and take advantage of them. To some, it is all about winning and domination. To those individuals if someone(the intended target) can not fight back, it is an even sweeter win. You see, how someone else feels is of no concern to them....how they feel is. Thank goodness that the majority of people do not like to watch others suffer and do feel sympathy for the hurting. We have to have compassion for the hurting..we ourselves may be in those shoes ourselves one day. SO while dealing with situations that seem to be of such high stress, it is the attitudes of others towards the weak, hurting, and vulnerable that challenges me more than anything. We have to speak up for those that can not speak for themselves.

Swimming Pool

2011-07-31T16:22:00.000-07:00

This is a picture of the outdoor pool where I grew up. I grew up in this little village in Ohio called Stratton. Stratton is nestled down in the valley...hills on either side and the river runs down the middle. Stratton has not changed much. The population stays about the same and the houses are kept up but are by no means "flashy". There is a huge power plant and the village benefits from it. Stratton has an indoor and outdoor pool, a nice municipal building and fire department, and, of course, a playground. What you will not find is a single stoplight...really! I miss this little village and I am having fun on Facebook connecting with some of the "friends" who still live there or did live there. I can not find one person that does not talk about how much fun it was growing up in Stratton. There were the grumpy few folks but for the most part....boy did we enjoy are simple life there!!!!

Observation....

2011-07-31T16:02:00.001-07:00

There are those indivduals that are so good at twisting and distorting reality so that when the truth is spoken, the twisted reality is actually easier to believe and you end up questioning yourself. We live in deceptive times!

A random thought....

2011-07-31T15:37:00.000-07:00

DO not be afraid to ask someone if you feel the nudging to...it may be that that person has just been waiting for the one who dared to reach out and in to them in the midst of their pain.

Truth

2011-07-29T18:55:00.000-07:00

What is truth?? DO you believe there is an absolute truth or do believe that truth is relative???

Would not the world be chaotic if there was not an absolute that we can weigh out what is right and wrong???

WHat is worldview???

2011-07-29T17:08:00.000-07:00

What is worldview??How do you view the world and the things around you?? DO you know through what lenses you are looking??

Observation

2011-07-24T21:32:00.000-07:00

For the vast number of human beings, seeing someone hurting or suffering elicits sympathy and compassion towards that individual. However, there truly are some people that do not have the ability to feel compassion or sympathy towards others. These individuals may even be bothered about how another's suffering and pain could be interfering in their life. Consider yourself blessed if you have not met an individual such as described and pray for them if you have.
.

I guess it is about time.....

2011-07-24T16:24:00.000-07:00

I have not been writing on here very much but that does not mean there is not alot going on. I guess, though, it is about time that I start writing a bit more about dealing with trauma, spinal cord, injuries, care giving, grieving, struggle, and not nice people...what..yea people who just are not nice. Often times these individuals will actually seek out those that are weak, vulnerable, and maybe even defenseless, to then attack. The goal...domination. (Guess that will be a post by itself)
I would like to try to dispel some myths and assumptions....maybe to enlighten and educate....I do not know. My sister, who is a surgical nurse, said that I make things appear too easy...yea, this journey is not easy at all but it is doable. She knows how it is to care for someone in a hospital setting. She knows that when she went into surgery she had to go through specialized training which I had not done prior to my oldest son's car accident. She knows the physical exertion required to move, and lift, and turn someone. She knows the emotional strain you can experience when working to keep a human life alive....and that is with someone you do not know. She knows me. She has stood beside me watching and feeling helpless. She has watched the pain, the suffering, the joy, the ups, and the many downs. I hope by writing, I can portray that although a journey may just totally challenge you, and at times feel like it will completely break you, you can do it!!! I hope I can provide encouragement to those entering onto journeys that are so overwhelming. I hope that I can show that you can not look in and know how it feels. We humans tend to imagine how we would feel...you can not imagine! It is only those that have been here, really walking it out(not just portraying that they have) that can really know what it feels like.
Who I am is a very regular person, but I do happen to have a close relationship with an extraordinary God. He chooses those to work through who are not out to take the credit for themselves, who will not try to claim the glory, the fame, the recognition, but instead will allow Him to work through them and point to Him as their source of strength. OH trust me, I am a work in progress, but I have learned a lot! Please do not ever try to elevate me for I am not above or below anyone, nor are you. I have been literally on my face pleading with God for the next breath....an ounce of strength. I have had insults and outright assaults come at me while at some of my lowest points, (Sometimes even when trying to help my one child to breath)...yikes!!!! But by the grace of God, the next moment came and I had become stronger not weaker.
Yes, I am very regular and I know what we humans can do with God. I have become friends with individuals that I used to hear about...meaning, their struggles were ones that I would hear about from a distance and could not fathom enduring. Now, I am in one of those situations myself and others are looking at me wondering, "How can she endure?" I am not strong but He(meaning God)is. I have hesitated to write much about the "true" struggle for fear that that struggle would be what got focused on instead of what that struggle might have produced. I have hesitated to write because my struggles pale in comparison to what my oldest child has experienced as well as many others I have been introduced to. I have hesitated to write for fear that it may seem that I am trying to have others look to me as someone with answers.....oh my, I am not that....I look to God and He supplies me with the answers through various ways...sometimes through HIs word, sometimes through people, and sometimes through a thought in my head. The journey I personally have been on is way to complicated for this girl to navigate without some sort of source of strength other than her owm. I guess it about time to share the struggles a bit more. I hope in some way, some how, something that I may write can help a person that is struggling, or perhaps someone who is watching another struggle. I pray that something that I have been given can be passed on through words written. Those of us on these journeys which involve long-suffering, tend to gain strength from reaching out and back to others either on a joureny themselves or, painfully, entering in as a rookie. I guess it is about time......

Thought...

2011-07-22T20:41:00.001-07:00

External scars are visible...internal ones are not...or are they??

"Beautiful" by Mercy Me

2011-07-22T19:45:00.000-07:00

To all the young girls and grown women that have believed the lies that have been told to them. To God, you are beautiful!!! He created you and placed you in this generation for His purposes!!!! He loves you immensely!!!

Kari Jobe..."Beautiful"

2011-07-22T18:35:00.000-07:00

I came across this young lady's voice today...WOW!!! What a "beautiful" song!!! I bought her entire album and more:) I had to share!!!

A Wise Woman's Stone

2011-07-22T18:32:00.000-07:00

I have not posted for quite awhile...ahhh the busyness of summer:) That can be a good and fun thing! I have actually been able to read a few books...yahoo!!! I came upon a few neat stories and quotes about what is truly valuable. Here is one that I came accross......

A Wise Woman’s Stone

A wise woman who was travelling in the mountains found a precious stone in a stream. The next day she met another traveller who was hungry, and the wise woman opened her bag to share her food.

The hungry traveller saw the precious stone and asked the woman to give it to him. She did so without hesitation.

The traveller left rejoicing in his good fortune. He knew the stone was worth enough to give him security for a lifetime.

But, a few days later, he came back to return the stone to the wise woman.

“I’ve been thinking,” he said. “I know how valuable this stone is, but I give it back in the hope that you can give me something even more precious. Please give me what you have within you that enabled you to give me this stone.”

Sometimes it’s not the wealth you have but what’s inside you that others need.

Source Unknown

Question....what's inside you?????

A thought....

2011-07-22T18:29:00.000-07:00

When the hurt inside myself or in a situation in which I am in, is so great, it is only by looking outside to others pain that I can keep my mind healthy and my heart soft, pliable, and thus allow compassion to grow. I can then allow that compassion to be used to spread kindness and love not hatred and violence.

Memorial Day 2011

2011-05-30T14:00:00.000-07:00

On this day, I am always reminded of the Memorial Day ceremonies that I attended as a child in Stratton, Ohio. We were a small village but we had some big heroes in our community. My father(who passed away in 1970), and my neighbor Don, who was a P.O.W. of the Korean war were two individuals that helped me to come to understand what sacrifices are made for freedom. We had a big ceremony in Stratton because we realized that we were only able to stand there because someone else was not! Do you know that today someone is without a Daddy so you can have some watermelon in safety??? DO you know that someone is missing a limb or two off of their body so you can go to a parade in safety???? DO you know that someone, right now is battling the post-traumatic stress of battle so you can be sitting quietly wondering what fun activity you can do next...or not do??? DO you know...I do not take this day of remembrance lightly. I will never forget the flag getting folded over my Daddy's casket just two weeks before my sixth birthday. My mom and sister(7), and brother(9), standing close by as the guns fired blanks and then "Taps" was played. Dramatic you say...yea until you experience it for yourself. MY dear friend who never got to meet her daddy because he died in battle when she was just 3 months old. Please know that freedom is not acquired without a cost being paid. Thank you for those that have paid dearly....and thank you to those that will be joining the forces soon knowing that they too may experience the unimaginable so we can continue to live in the land of the free!!!!

God's Faithfulness

2011-05-22T22:59:00.000-07:00

It is sometimes that only after reaching a depth of pain that no human can sooth, can God touch us in a we that we fully recognize that it is He. A God that reaches in in the midst of despair and sorrow...He understands and cares. It is this kind of touch where we can just sink in to a Daddy's arms where we know that somehow we will and can continue ...with Him....somehow we will be ok...with Him. The suffered and the suffering become tools...God hates the pain and suffering and promises that if we claim the name of Jesus, that one day the suffering will be no more. Understanding human suffering can often only be made sense of when you yourself experience a degree first-hand and then watch how a loving, perfectly just, God touches the hurting and afflicted. We look for big changes...pain to be gone, problems solved....but it is when we come to a place where we can recognize that it is in that pain, and only with, that we realize our absolute dependence on God to be sustained. It is then that we can realize blessings in ways that few can comprehend. It is then that we see, feel, touch, and love with a different capacity and in a different way. Pain is not to be feared...that is not of God! Allow God, instead, to fully use that which He sustains you through. God is faithful......

WIth that being said....My son ALex turned thirteen on April 11th....WOW! When I write about pain and suffering, ALex sure has been through his share as have all four of my kiddos. ALex does not ask for much. One of the things he asked for was for me to make him one of the slide show videos that I do. I knew what I wanted to do and started to work on it right away. Well, one computer went down, then I lost the project again....finally I used a new program and got it all together. Following is the video. I wanted to remind ALex of the faithfulness of God. Boy, has Alex been sustained through more than most of us could imagine experiencing. I pray that if you watch that you see hope. This journey has been so full of challenges but the lessons learned are far worth the cost!

2011-05-08T08:59:00.000-07:00

HAPPY MOMMY"S DAY!!!!!

Someone sent me the following via email.....

POSITION OPENING: Mother, Mom, Mama, Mommy, Ma.
JOB DESCRIPTION: Long term, team players needed for challenging permanent work in an often chaotic environment.
Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include evenings and weekends and frequent 24-hour shifts on call.
Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities.
Travel expenses not reimbursed. Extensive courier duties also required.
RESPONSIBILITIES: The rest of your life. Must be willing to be hated, at least temporarily, until someone needs $5. Must be willing to bite tongue repeatedly.
Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf.
Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers.
Must screen phone calls and the Internet, maintain calendars and coordinate production of multiple homework projects.
Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks.
Must be willing to be indispensable one minute and an embarrassment the next. Must handle assembly and product safety testing of a half million cheap, plastic toys and battery operated devices.
Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product.
Responsibilities also include floor maintenance and janitorial work throughout the facility.
POSSIBILITY FOR ADVANCEMENT AND PROMOTION:
Virtually none. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you.
EARLIER EXPERIENCE: None required unfortunately. On-the-job training offered on a continually fatiguing basis.
WAGES AND COMPENSATION: Get this! You pay them! Offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent.
When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could do more.
BENEFITS: No health or dental insurance. No pension, no tuition reimbursement, no paid holidays and no stock options are offered.
However, this job supplies limitless opportunities for personal growth and free hugs for life if you play your cards right.
Does this sound like something you would want to apply for? Although it may sound daunting, billions have risen to the challenge.
Happy Mother’s Day to you all.

Kory Wiita

2011-04-28T20:20:00.001-07:00

He's still going....

That's my King!!!

2011-04-22T09:09:00.000-07:00

Do you know Him???

AN Email...

2011-04-05T20:45:00.000-07:00

The following is one of the coolest email I have ever received......

Carl was a quiet man. He didn't talk much. He would always greet you with a big smile and a firm handshake.

Even after living in our neighborhood for over 50 years, no one could really say they knew him very well.

Before his retirement,he took the bus to work each morning. The lone sight of him walking down the street often worried us.

He had a slight limp from a bullet wound received in WWII.

Watching him, we worried that although he had survived WWII, he may not make it through our changing uptown neighborhood with its ever-increasing random violence, gangs, and drug activity.

When he saw the flyer at our local church asking for volunteers for caring for the gardens behind the minister's residence, he responded in his characteristically unassuming manner. Without fanfare, he just signed up.

He was well into his 87th year when the very thing we had always feared finally happened.

He was just finishing his watering for the day when three gang members approached him. Ignoring their attempt to intimidate him, he simply asked, "Would you like a drink from the hose?"

The tallest and toughest-looking of the three said, "Yeah, sure," with a malevolent little smile.

As Carl offered the hose to him, the other two grabbed Carl's arm, throwing him down. As the hose snaked crazily over the ground, dousing everything in its way, Carl's assailants stole his retirement watch and his wallet, and then fled.

Carl tried to get himself up, but he had been thrown down on his bad leg. He lay there trying to gather himself as the minister came running to help him.

Although the minister had witnessed the attack from his window, he couldn't get there fast enough to stop it.

"Carl, are you okay? Are you hurt?" the minister kept asking as he helped Carl to his feet.

Carl just passed a hand over his brow and sighed, shaking his head. "Just some punk kids. I hope they'll wise-up someday."

His wet clothes clung to his slight frame as he bent to pick up the hose. He adjusted the nozzle again and started to water.

Confused and a little concerned, the minister asked, "Carl, what are you doing?"

"I've got to finish my watering. It's been very dry lately," came the calm reply.

Satisfying himself that Carl really was all right, the minister could only marvel. Carl was a man from a different time and place.

A few weeks later the three returned. Just as before their threat was unchallenged.
Carl again offered them a drink from his hose.

This time they didn't rob him. They wrenched the hose from his hand and drenched him head to foot in the icy water.

When they had finished their humiliation of him, they sauntered off down the street, throwing catcalls and curses, falling over one another laughing at the hilarity of what they had just done.

Carl just watched them. Then he turned toward the warmth giving sun, picked up his hose, and went on with his watering.

The summer was quickly fading into fall. Carl was doing some tilling when he was startled by the sudden approach of someone behind him. He stumbled and fell into some evergreen branches.

As he struggled to regain his footing, he turned to see the tall leader of his summer tormentors reaching down for him. He braced himself for the expected attack.

"Don't worry old man, I'm not gonna hurt you this time." The young man spoke softly, still offering the tattooed and scarred hand to Carl. As he helped Carl get up, the man pulled a crumpled bag from his pocket and handed it to Carl.

"What's this?" Carl asked. "It's your stuff," the man explained. "It's your stuff back. Even the money in your wallet." "I don't understand," Carl said "Why would you help me now?"

The man shifted his feet, seeming embarrassed and ill at ease. "I learned something from you," he said. "I ran with that gang and hurt people like you. We picked you because you were old and we knew we could do it But every time we came and did something to you, instead of yelling and fighting back, you tried to give us a drink. You didn't hate us for hating you. You kept showing love against our hate."

He stopped for a moment. "I couldn't sleep after we stole your stuff, so here it is back."

He paused for another awkward moment, not knowing what more there was to say. "That bag's my way of saying thanks for straightening me out, I guess." And with that, he walked off down the street.

Carl looked down at the sack in his hands and gingerly opened it. He took out his retirement watch and put it back on his wrist. Opening his wallet, he checked for his wedding photo. He gazed for a moment at the young bride that still smiled back at him from all those years ago.

He died one cold day after Christmas that winter. Many people attended his funeral in spite of the weather.

In particular the minister noticed a tall young man that he didn't know sitting quietly in a distant corner of the church.

The minister spoke of Carl's garden as a lesson in life.

In a voice made thick with unshed tears, he said, "Do your best and make your garden as beautiful as you can. We will never forget Carl and his garden."

The following spring another flyer went up. It read: "Person needed to care for Carl's garden."

The flyer went unnoticed by the busy parishioners until one day when a knock was heard at the minister's office door.

Opening the door, the minister saw a pair of scarred and tattooed hands holding the flyer. "I believe this is my job, if you'll have me," the young man said.

The minister recognized him as the same young man who had returned the stolen watch and wallet to Carl.

He knew that Carl's kindness had turned this man's life around. As the minister handed him the keys to the garden shed, he said, "Yes, go take care of Carl's garden and honor him."

The man went to work and, over the next several years, he tended the flowers and vegetables just as Carl had done.

During that time, he went to college, got married, and became a prominent member of the community. But he never forgot his promise to Carl's memory and kept the garden as beautiful as he thought Carl would have kept it.

One day he approached the new minister and told him that he couldn't care for the garden any longer. He explained with a shy and happy smile, "My wife just had a baby boy last night, and she's bringing him home on Saturday.."

"Well, congratulations!" said the minister, as he was handed the garden shed keys. "That's wonderful! What's the baby's name?"

"Carl," he replied..

That's the whole gospel message simply stated.

Laura Story..."Blessings"

2011-04-04T11:16:00.000-07:00

I stumbled upon this singer and her song "Blessings".....

Strong thought...

2011-03-28T10:45:00.000-07:00

We live in days where many go out and do public displays of what appears to be good works. They receive their worldly praise and then go behind closed doors (of homes and churches) and do what is absolutely opposing to God! We need to be full of light whether in public or private. We can not tolerate what is so full of darkness. What we tolerate we can then begin to walk a part of.....

Quote...

2011-03-28T09:33:00.000-07:00

"If you want your ears tickled, it is easy to find these days. If, however, you want the truth...it may cost a bit more to find but when you do, you WILL find it and the rewards you reap will have eternal benefits"....anonymous