35 replies to this topic

[Ratticis]

http://abcnews.go.co...ory?id=16033161

[Inkd760]

its an awesome story and it brings hope if u can afford it that is..... I live in California and they are in Los Angeles u have to buy a membership and package one includes (2) 45 minute sessions a week at $1100 a month with a 2 months mandatory OR package two includes (3) 45 miniute sessions a week at $1600 a month with 2 months mandatory. These are just the locomotor training and they do offer more things. It just sucks that everything that offers hope or someone with an SCI needs costs so much. I guess hope even has a pricetag nowadays.

[greybeard]

While I'm pleased at the extent of this guy's recovery, this sentence that he is reported to have uttered made me grind my teeth a little:

"You hear it all the time, but if you put your mind to it, you can make it happen. But you know it's true that if you stay focused and work every single day, you really can do whatever you set your mind to," he said.

You do hear it all the time, and with regard to recovering function, it still only applies to the lucky few. For many it just raises false hopes. In my opinion, someone who has been through all the ups and downs of dealing with spinal issues really ought to know better than to make such an unqualified statement.

[edlee]

GB,, I couldn't agree more. I, Too,, am happy for him,,, but he is not only feeding this crap to the newly injured,,, who really want to hear it,,, but to the general public. Telling them that SCI can be cured by individual effort. What a crock of crap that is.

We have enough trouble with public ignorance of us,, without one of us making it harder. If he can make such an unconditional statement like that,, so can I,,,,,, " The guy's a d**k".
ed

[Ratticis]

Ya, that line really meade me cringe too. Then you meet people like my moms sister-in-law (who thinks I'm not a person, but a wheelchair with a guy attached) who tells me 5 mins after meeting me that I "just need to work hard and have faith that God will help me walk again"

[Wobbly]

Didnt "god" also raise the dead and turn water into wine? Perhaps they should have a go at that and when they're successful they can really show us strong their" faith" is and ergo how rubbish we are.

[mcferguson]

It is super that he can now stand on his own and dance a little. He achieved that through a tremendous amount of effort overcoming an incomplete injury. A fuller picture of his life is found in this article titled Janne Kouri's War (http://finntimes.com/?p=2359), which includes pertinant details that were not in the TV story. To wit:

" “I started to improve immediately at Frazier Rehab. It was quite an amazing place. Rehabilitation began immediately on the first day. I trained there for eight hours a day for total of ten months..."

"It was essential that Janne had excellent health insurance. His medical bills totaled a whopping 20 million dollars!"

"Despite of his great progress, there are still many things in Janne’s life that are more cumbersome than before his accident. He calls his condition with a term “incomplete”."

"“I have a special car, it takes two hours to take a shower, I am unable to put the clothes on me. I need help with morning and evening, undressing, and gaining access into bed. I can not travel alone. I can not get up or down stairs. Many restaurants and bathrooms are inaccessible,” Janne lists."

I know I didn't (and still don't) have the resources to spend eight hours a day for ten straight months trying to find out if my injury is less than complete.

[edlee]

Even more reason to drop the " anything is possible" spiel. After 20 million dollars and 2400 hrs of exercise and therapy,, he has shown some improvement.

I could spend the same amount of time and money,, and I;d still be a t10 complete,,,, but in excellent shape,,, but poor.

Wonder what that 20 mil would have been worth in research,,,,
ed

[joye]

While I'm pleased at the extent of this guy's recovery, this sentence that he is reported to have uttered made me grind my teeth a little:

"You hear it all the time, but if you put your mind to it, you can make it happen. But you know it's true that if you stay focused and work every single day, you really can do whatever you set your mind to," he said.

You do hear it all the time, and with regard to recovering function, it still only applies to the lucky few. For many it just raises false hopes. In my opinion, someone who has been through all the ups and downs of dealing with spinal issues really ought to know better than to make such an unqualified statement.

This, in my opinion, is an advertisement piece that is advertising this Next Step Fitness place as cutting edge, never-been-done before rehab. Both Project Walk and Kennedy Kreiger have been doing this exact same type of "repetitive motion" therapy for many years now. And have countless cases just as this one. I personally witnessed people gaining function and taking first steps many times in the Project Walk facility in Carlsbad, CA. Yep . . . saw it with my own eyes. Some complete injuries, but most incomplete injuries and some even many years post injury. I could write a great book on what I witnessed at this place. My hubby wasn't one of those who gained any function . . . but, I will always maintain that his current good health is directly related to that therapy.

His comment regarding "putting your mind to it . . . " offends me for this reason: Although I in part believe this statement; his ambiguous way of stating this statement is one of much more complication. Yes . . . you do have to put your mind to it; however, after speaking to these people who have gained function as a result of this therapy, that is such an understatement. In their explanations and what I watched . . . it's a lot more than that. These people who have accomplished this seem to be people who are able to focus and put their brains to work on this in a way that I cannot even describe. It's kind of like a perfect storm has to take place. It's not simple and a lot has to come together at one time to get that one little bit of function. And then, of course . . . that little bit of function is used to help them keep on going. It provides an enormous amount of motivation and even more focus.

My husband was a strongly motivated person before his injury. He was literally in the gym 2 to 3 hours every single day. His dedication to his fitness was inspiring. However, this alternative therapy he does as part of the Project Walk program . . . although a great benefit to his health, has not provided any new function. He loves the exercise as it reminds him of his gym days, but in my opinion . . . this love of exercise, and the enjoyment he gets from his current workouts, actually hinder his ability to engage his mind in the same manner I witnessed those who gained function were doing. I hope this makes sense . . . it's difficult to articulate. I did not see them enjoying the exercise. I watched them working . . . and I mean working HARD. They weren't smiling, making small talk, enjoying themselves like my husband Andrew was. They were working.

I have tried to articulate what I've observed to Andrew and I can tell he just doesn't understand what I mean. He never understood why people didn't enjoy exercising and it has never been work to him. I have basically left it alone at this point. I am happy he has this to enjoy and I love that he smiles, makes small talk and is happy to be doing his workouts. I only wish these stories of people who have gained function could be a little more honest about why this alternative therapy works for some people. It is an indescribable amount of work and takes a lot of time and money to see any return of function.

[edlee]

First, let me say that I am happy that your husband finds joy in his workouts, and that his health is good. OK,, here I go again.

NO,,, the ones who gained function were NOT complete. Atrophy of your muscles can mask any natural gain one might incur without exercise,, and it is that renewed streching of the tissue that allows it to be seen.

NO amount of spirit, work, faith,, is going to cause the nerve cells to regrow though the scar tissue. Chemical therapy,, perhaps stem cells,,, but no amount of will power or mechanical manipulation is going to bring back the destroyed nerve cells any faster than they would have anyway.

It is a disservice and an insult, to those of us who have fought for recovery,,, to intimate that if we had only worked harder,,,,,

ed

[joye]

First, let me say that I am happy that your husband finds joy in his workouts, and that his health is good. OK,, here I go again.

NO,,, the ones who gained function were NOT complete. Atrophy of your muscles can mask any natural gain one might incur without exercise,, and it is that renewed streching of the tissue that allows it to be seen.

NO amount of spirit, work, faith,, is going to cause the nerve cells to regrow though the scar tissue. Chemical therapy,, perhaps stem cells,,, but no amount of will power or mechanical manipulation is going to bring back the destroyed nerve cells any faster than they would have anyway.

It is a disservice and an insult, to those of us who have fought for recovery,,, to intimate that if we had only worked harder,,,,,

ed

edlee,

I truly think this all goes back to the incomplete vs. complete confusion (for lack of a better word). I posted questions with regard to this issue in 2009 and although I have become much better acquainted with my husbands condition . . . I truly have never had a good grasp on this issue. I've been told and read many things that are contradictory to say the least. Not in the Project Walk program, but in acute rehab my husband himself gained a function to breath without a vent and has gained function in his diaphram (we know this based on flutter tests), but yet was and still is diagnosed as a complete injury. One said explanation of what it means to be complete is "no chance of any function recovery." Please correct me if I'm wrong but isn't breathing a function? In this case wouldn't this make my husband an incomplete injury? Please understand . . . I'm really asking . . . I'm not being sarcastic. This issue has weighed on me since his injury.

We've had insurance problems related to this issue as well. Because his diagnosis is "complete," insurance companies don't like to pay for continued rehab after acute rehab. Nevermind the other wonderful health benefits that go along with it. Nevermind that he has much less UTI's which saves them costs on drugs and possible hospital stays. He is a complete injury and they won't pay. It's so frustrating!

And please don't take my earlier post to mean that I agree with what this man said about putting your mind to it blah blah blah. I saw many people do things I would have never believed had I not seen them. I think everyone's body and injury is different and very specific to each individual and I wish the medical community would reasses their labelling. I mean really . . . how do they actually know if it is complete or incomplete unless there is a severed spine? And . . . these diagnosis they "throw" around affect peoples benefits.

I would never say nor agree with anyone who insinuated that if only someone worked harder or any of that nonsense that they would gain function; and I'm very sorry if my prior post made it sound this way. My observations were simply those that I saw gain function worked very hard and it was inspiring and also interesting to see the way they focused. Maybe these were people who were going to gain this function anyways without the rehab . . . who am I to say. I was actually told by some of them that they had been diagnosed as complete injuries. When I would ask them if, due to their new found function, if their diagnosis would now be changed to incomplete and only got blank stares . . . no one seemed to know.

Oh and please tell me what you mean by "muscles can mask any natural gain one might incur without exercise,, and it is that renewed streching of the tissue that allows it to be seen. I'm interested to know more about this. Thank you.

[Muskie]

The best explanation I have gotten about complete vs incomplete is if you have any sensation at all around the anus you are deemed an incomplete.

[tsh3406]

Did anyone notice this HUGE error in the article, the one thing they desperately need to clear up? "With his spinal cord fractured in two places...." Now, was his spinal COLUNM fractured or was his spinal CORD severed? That one detail changes the entire story.

[tsh3406]

I just sent this to ABC, I encourage all of you to voice your concerns as well....

"In regards to your article entitled "Man's Miracle Recovery: From Paralyzed to Helping Others", http://abcnews.go.co...ory?id=16033161
The author states "With his spinal cord fractured in two places", and that's a very dangerous, misleading mistake to make. The spinal column is bone, it can fracture and heal without causing catastrophic, permantent nerve damage. The spinal cord is soft tissue and if severed, does not regenerate."

[edlee]

Joye,,doctors can call it anything they want,, but there are accepted guidelines for the two diagnoses. I won't go into what they are,, as there are others here who are much better equipped to do so. Suffice it to say that for me,,, a complete injury is one that doesn't change for the better,,, anything else would be incomplete. Now this may not satisfy everyone,, but as you can see,, it would certainly simplify things.

My statement was about atrophy of muscles,, it is the condition that exists when muscles haven't been used for a period of time. They lack tone,, and in some cases, seem to be paralyzed,, or partially so. Muscles in my abdominal region,, are connected, above my injury and below. Through vigorous exercise during my rehab,,, after three months of no use at all,, there, at first, seemed to me to be some recovery. I was dissappointed to find out that it was simply the half above my injury regaining some tone.

Apparantly there are some injuries that are,, more complete than others. Perhaps we should start using the word absolute, instead.

Joye,, I took no offense with your post,, and I hope you know that none is meant by mine. I simply get tired of hearing that line,, when I know better.
ed

[joye]

Thank you Ed . . . I appreciate your response.

I truly only have the one bit of "heart burn" with the complete/incomplete issue and that of course is . . . I'd like to see my husband get some of this continued rehab covered by insurance. Having that "complete" label really hurts his chances of ever getting a dime for it. Otherwise, his diagnosis does not change one thing for today. His condition is what it is and having a label of complete or incomplete at this stage would not change a thing for him.

One piece of equipment that is used at Project Walk is called a Gait Walker. It is this big machine that he is harnessed to that pulls his body up and from side to side while a treadmill is moving his legs forward to simulate walking with a true gait. This movement is great for edema and as it is weight bearing it's good for bone density (osteoporisis) and I personally have noticed when he is able to use this machine he tends to have less pain in bed at night. It is very expensive for us to get him time on this machine there, as you can imagine. The VA in San Diego (and I'm sure others around the country) has this exact machine in that facility. I was so excited when I saw this machine; Andrew is a veteran and because his injury is catastrophic he has pretty good coverage through the VA. When I asked his OT if he would be able to use this machine I was told no because he is a complete injury. I have been in that facility countless times and I have never seen a single person use that Gait Walker. I was once told that those machines cost over $100,000 USD and no one uses it! This infuriates me. And this is why I hate this labelling so much.

Here's another question if you don't mind. Andrew's muscles very obviously atrophied in his upper limbs and chest area very soon after his injury and have remained this way since. His legs on the other hand have tone. They have never changed in shape nor size since before his injury, and it is as though they are being "flexed" at all times. They are heavy and his spasms really get going when I am moving him around etc. Why does this occur? Why would they not have atrophied?

I completely understand what you mean by being tired of hearing that line . . . I know people don't mean to be offensive when they say things to Andrew like "never give up hope," "just keep working hard," oh and the one I love is "you aren't the type of person (marine) to let this keep you down." I know they think they are just trying to encourage him and make him feel better, but sometimes I wish they would just be happy he enjoys his exercise and be happy for that moment and not the moment they hope comes in the future. I am very much biased in saying this, but Andrew has worked very very hard, just as I can imagine you have. I've never seen anyone try so hard . . . of course, I love him, admire him and think he's amazing . . . but he really did work so so hard. I think if it only took hard work then he would have gotten some sort of function back. I hope that doesn't sound like I've given up . . . I just have to be realistic. His exercise plays a big role in his health . . . this I'm positive of and his VA docs completely agree. Not to mention he truly enjoys it and that makes me so happy that it has improved his quality of life.

Edited by joye, 09 April 2012 - 10:59 PM.

[Muskie]

Hi Joye, I don't know if this helps or if your husband would be a candidate but RTI has a home unit for gait training

[edlee]

When talking to the PTs at the VA,,, ask if they ever do any training on the Gait Walker. And that,, when they do,, your husband would be happy to volunteer as subject. Maybe you could, in this way,, give them the idea. Might be worth a shot.

As for the lower body tone. Spasms are muscle contractions,, and this is what prevents atrophy. Not unusual in the least. Most of the people I know, with frequent spasms, have reasonably good tone in the muscles affected.
ed

[joye]

Muskie,

He actually is not a candidate for the RTI gait trainer. His injury is too high and he's a huge man and it takes many therapists/aides to work with him. Great suggestion though. Those are great trainers for those who can use them.

Edlee,

I will try that; however, I doubt they even train on that machine. Right now it is shoved up against a wall covered with boxes, old cushions, wheelchair parts, etc. They have no idea how great this machine is just for health reasons and more importantly how much it helps with pain. It seems like a no brainer to me . . . use the machine and help people with their pain. As an AB person, sometimes I will sit too long on the computer etc. and will get such an ache in my back. All I have to do is take a walk and the aches and pains will generally go away. This machine basically lets you "take a walk" . . . what a concept right.

He does have a standing frame that allows me to move his legs like an ellyptical, but for some reason that gait walker does more for his pain. I think maybe because it actually simulates a true gait????

[edlee]

If he's in the VA system,, he has an SCI doctor assigned. Try talking to him about the pain benefit you are talking about. All you have to do is get him to ok it for that purpose,, and you're in. Most of these guys are pretty good about helping you in any way they can. And it never hurts to be the squeaky wheel.
ed

[Daveswife]

In my opinion I don't think that stories of hope are meant to criticize. By criticize, I mean make anyone feel like they didn't try hard enough, pray long enough, believe enough, etc. They are just sharing what they did in hopes it'll help someone else. Because my husband has a SCI Ive done a lot of research on the subject, but keep in mind the vast majority of people really don't know a lot about SCI. So if they mix up terminology, it's just because of lack of education. And shouldn't be taken personally. My husband is C5 Incomplete. He was diagnosed incomplete because he has function below the level of his injury and can feel his sphincter. Immediately following his surgery he was able to move his arms, but nothing else. In the months that followed, even though he worked very hard in therapy, he didn't regain any additional functionality. So I know first hand that your body will only heal as much as your injury will allow it to. And that everyone's injury is different. We saw C3s walking in therapy, and technically he should have had more function than them. But I still do believe anything is possible and I'm still filled with a lot of hope. In the past month we have seen twiches in his fingers and toes, and he has been able to move his legs slightly. This may not turn into anything, but I certainly hope it will, and I think it's ok to hope and believe that anything is possible. When people say encouraging words I'd say just appreciate the sentiment. They may not know the "right" thing to say but their hearts are in the right place. I'm ok with my husband not regaining any functionality. We still have a wonderful life, although much harder. But I will always hope for the best. Call me naive, but I really believe anything is possible, even if it doesn't happen for my husband.

[scaldedcat]

Edlee, I agree with everything you said. I've posted more times then I care to remember on the complete/incomplete issue. I still can't get my head around the fact that people can't understand the difference. We keep hearing "oh there's swelling that might not go down for years and things will change" etc, But the fact that is, if the spinal cord is severed or crushed, preventing signals being transmitted past the point of injury, it's goodnight. If it's not, then it's an INCOMPLETE injury and there is a realistic hope of things improving to various degrees. When you hear the "miracle stories" of a complete para or quad walking again it just makes me cringe. Not because of their success, that is wonderful, but the fact is that they were never a complete injury to start with.

The cord can't repair itself. I was told the day of my injury that I would never walk again because my spinal cord was crushed. Sure there was a huge amount of swelling as with everyone, but they could still tell that the cord was crushed and that even after the swelling went down it would not change anything. I appreciated being told the facts and not live with the false hope of doing this that or the other might help me walk again. That didn't stop me doing my PT etc to get my strength up for the challenge of being confined to a wheelchair for life, it gave me the information and truth that I wanted. Not false hope.

[The Black Sheep]

Well, I for one an actually a little inspired. I know "we've heard it all before" but after 13 and a half years, I think I sometimes I get into a mindset that there's no point in trying anymore. I don't play well with acceptence and I'm going to protest it for a while in my little walker until the bottoms of my feet hurt.

And holy cow! 20 MILLION dollars in insurance costs?!?!

Dang.

[Ratticis]

Edlee, I agree with everything you said. I've posted more times then I care to remember on the complete/incomplete issue. I still can't get my head around the fact that people can't understand the difference. We keep hearing "oh there's swelling that might not go down for years and things will change" etc, But the fact that is, if the spinal cord is severed or crushed, preventing signals being transmitted past the point of injury, it's goodnight. If it's not, then it's an INCOMPLETE injury and there is a realistic hope of things improving to various degrees. When you hear the "miracle stories" of a complete para or quad walking again it just makes me cringe. Not because of their success, that is wonderful, but the fact is that they were never a complete injury to start with.

The cord can't repair itself. I was told the day of my injury that I would never walk again because my spinal cord was crushed. Sure there was a huge amount of swelling as with everyone, but they could still tell that the cord was crushed and that even after the swelling went down it would not change anything. I appreciated being told the facts and not live with the false hope of doing this that or the other might help me walk again. That didn't stop me doing my PT etc to get my strength up for the challenge of being confined to a wheelchair for life, it gave me the information and truth that I wanted. Not false hope.

Thas true, but I can't be too sure that I'm actually complete. My spine was never severed or broken (Transverse Myalitis). And these are the same geniusus tha targued with me that I'm type 2 diabetic, even though I've been type one diabetic for over 20 years. I highly doubt they know the difference between complete and incomplete. Hell, the one asshole told me I'm a lyer and a drug addict trying to get more pain killers when my side hurt like hell. I've now got 3 ribs that were broken and healed back crocked and still hurt like hell all the time.

[joye]

Thas true, but I can't be too sure that I'm actually complete. My spine was never severed or broken (Transverse Myalitis). And these are the same geniusus tha targued with me that I'm type 2 diabetic, even though I've been type one diabetic for over 20 years. I highly doubt they know the difference between complete and incomplete. Hell, the one asshole told me I'm a lyer and a drug addict trying to get more pain killers when my side hurt like hell. I've now got 3 ribs that were broken and healed back crocked and still hurt like hell all the time.

Rattics,

I so completely (pardon pun) agree with you. I think when a spine is not severed and a complete or incomplete diagnosis must be made . . . there are many in the medical field unqualified or uneducated enough to really make this determination.

I have had a few opportunities to speak with Patrick Rummerfield. He personally told me that he was first diagnosed as a complete injury . . . granted, this was many years ago; but he in fact was told he was a complete injury and that his dad should come pick him up and put him in a home . . . that, he would never walk, or move or feel anything ever again.

There is a lot of controversial information out there with regard to this subject. I have to say . . . I tend to agree with the consensus that if you are truly a "complete" injury, then that is it . . . you will not regain function again . . . period; I am not disputing this. However, where my opinion (and this is only an opinion) may differ is in the diagnosis. I think that many times people are wrongly diagnosed in this specific area. And this I believe, is tragic. Imagine being given the diagnosis of "complete" when you may not have actually been a complete injury. So, you live as a complete injury. You learn to live in a chair and you accept your diagnosis for what it is. You never even attempt a rehab that may give you some sort of return of function because you were told there is no point. Imagine if Patrick Rummerfield had just accepted his diagnosis. This is where my "problem" lies. I'm not disputing the fact that if you are a complete you will not gain function . . . I think I'm more disputing that everyone is being correctly diagnosed.

I guess my main reason for disputing this is my husband's injury. He, as I've said, is a C-2, Asia A, Complete injury. This diagnosis (so I was told) was based on the ASIA test, by how his spine looks in his MRI, and by the fact that he cannot feel any sensation in his anal area. And I may be wrong (please tell me if I am) . . . but, what I've learned is a C-2 (complete) level of injury means you cannot breath without ventillator assistance . . . and furthermore, you definitely cannot autonomically breath (breath while sleeping) at this level of injury. My husband breaths day and night with no vent assistance. He doesn't even need oxygen. He has a very weak cough . . . but he breaths. I've also read where those at a C-2 level also should not be able to swallow. He eats a normal diet. My opinion is one of two things. He is either really a lower level of injury or he is an incomplete injury. How could it be anything else?

I learn so much more from this site than anything docs tell me . . . thank you all so much for all your expertise!

[Ratticis]

The knowledge shared on this sight is gained through living it, not reading half a page in a 40 year old book 15 years ago.

Ya, they should stick us all in 'Brokins Pines Nursing Home'

[Tetracyclone]

Joye,
Some of the details you have read are not widely agreed upon in the medical profession. Diagnosis is done by vote- somewhat less than
scientific, no?

Christopher Reeves life would be a good read for you as he was c2 complete, learned to breath on his own, and was still getting little improvements 5 years post. He also had immense resource for PT.

I was initially diagnosed as complete. I told my MD that I thought I could contract the anus. He put on a glove and tested me- no response.

Scroll forward 8 months when I got back to the US and started using suppositories. I would glove up and use the process as biofeedback to figure out the coordination of anus contraction. Yes, I had the ability to do it, but do you know a PT who wants to stick their finger up your butt while you practice finding a muscle response? We are the ones with the most info about our condition and we should jus try things and think for ourselves.

It is not important what your Hubby's diagnosis is. The only important thing is what he can learn to do with the resources he can marshall.

Edited by Tetracyclone, 29 April 2012 - 09:02 PM.

[joye]

Joye,
Some of the details you have read are not widely agreed upon in the medical profession. Diagnosis is done by vote- somewhat less than
scientific, no?

Christopher Reeves life would be a good read for you as he was c2 complete, learned to breath on his own, and was still getting little improvements 5 years post. He also had immense resource for PT.

I was initially diagnosed as complete. I told my MD that I thought I could contract the anus. He put on a glove and tested me- no response.

Scroll forward 8 months when I got back to the US and started using suppositories. I would glove up and use the process as biofeedback to figure out the coordination of anus contraction. Yes, I had the ability to do it, but do you know a PT who wants to stick their finger up your butt while you practice finding a muscle response? We are the ones with the most info about our condition and we should jus try things and think for ourselves.

It is not important what your Hubby's diagnosis is. The only important thing is what he can learn to do with the resources he can marshall.

Tetracyclone,

Yessss . . . you are so right. Those who have SCI are definitely the ones who know most about their own conditions. I understand that my husband's diagnosis is not so important, with exception to him losing out on certain opportunities (insurance wise) with regard to rehab, as I posted earlier to this thread. If I could somehow get someone else (of medical authority) to agree with me . . . maybe his diagnosis could be officially changed and he would be eligible for certain rehab equipment at the VA that we currently go somewhere else for him to use and pay big bucks for as well.

I did read Christopher Reeves' story a few years ago. If I remember correctly . . . he was not able to breath autonomically (without thinking, like during sleep) and his injury level and asia classifications were changed (I think to Asia C) as well being changed from complete to incomplete.

Please don't get me wrong . . . I'm not thinking if Andrew's injury diagnosis was changed from complete to incomplete, it would magically change his level of function. I realize (as Andrew does) that at this moment his level of function is what it is. I'm just trying to get more resources for him. He so chooses to want more rehab and more opportunity to use this wonderful equipment. We do for him what we can afford at this point . . . he'd love to be able to do so much more.

Isn't it funny how docs don't like to listen when you try to tell them what is going on with your body. I cannot tell you how many times I've been told how wrong I am or better, I get that look from doctors of "you have no idea what you are talking about" when they ask me what his level of injury is and I tell them C-2 complete. I usually get told he must have been diagnosed wrong or I did not clearly hear or understand what his diagnosis was. I've been told there is no way he could be breathing right now if he was in fact a C-2 complete. And, then when I have to go into further explanation as to what percentage of use his diaphram has which is basically 1% on the left side and 0% on the right as per a flutter test . . . they really dismiss me. So frustrating!

[Tetracyclone]

Joye,

You make perfect sense and the deal with insurance and the VA is very important. I hope you encounter a doctor who make the effort to get Andrew reclassified. Perhaps if the treatment you struggle to pay for shows some measurable results they will be force to reconsider.

Oh, the stories we could tell of doctors who tune out well-informed patients. Yet I have also had doctors who relied heavily on my judgement.

Frequent diagnosis of medical personnel: Arse *.* complete.

[Rabih]

Joye,
i'm 100% surethat chris reeves had treatments or operations cause in a couple of years he even looked different.pail,bold and looked really older.i think that's the cause of his death,not bed sores like they said.i saw him on Larry king months b4 dying and he could move a finger.i told the people sitting with me that he looked like a cancer patient on chemotherapy. a few months later he passed away.???