67 replies to this topic

[aaaa]

is my life realy over,im 22 been a c4c5 for a year, was a college when i was hurt ,life was so good,i looked forward 2erveything,kids,wife,great job,,,my life change an i mean change,i lost my girl but dont blame her ,i cant do nothin 4her shes 22all so,basicly i lost ervrything,,people tell me tht i may walk in the future with tecnology but my life is passin me by,,is there a cure,has anybody been cured ,is anybody tryin 2get cured,,have anybody look in other country 4 a curewill we walk again

[sfultong]

Maybe we will, maybe we won't.

If there's a cure 10-20 years away, it's not going to help us now, anyway. We have to deal with who we are in the short term.

Your challenge is finding something worth doing while you have a SCI. If you felt that your life was currently productive, you wouldn't worry so much about the future.

My SCI has given me lots of free time, because I'm not expected to be able to support myself immediately. I've been able to study some things I was interested in, and work on some computer programming projects that interest me. I also am interested in volunteering at a local alternative high school. That's something you can do even if you have a very high-level injury: teach.

[Tim13]

Will we walk again?
I sure as hell hope so but i ain't holding my breath.
When i was first injured, all i heard was 'the cure is right around the corner, the cure is two years away" and so forth. There was this great scientist fittingly named Dr. Wise Young who was making great strides to cure paralysis, after two years turned into five, i realized that this wasn't happening and noticed the only time researchers opened their yaps about "the cure" was right before grant renewal season.
On one hand, it irritates me that i basically wasted a lot of time living on false hope, on the other, the false hope lessened the trauma of having a spinal cord injury.
Short term-you're basically screwed as far as recovery so just suck it up and make the best of a bad situation-that's what the rest of us are doing.

[greca]

I've been reading some books about stem cell research in SCI, and it seems to be working for the rats but somehow they just can't get to have these cells correctly repdoruce in your spinal cord without running the risk of becoming tumors if they mulitiply improperly.

My fiance is 22 years old too. But what I keep telling him everyday is that
The last thing to die is your spirit, and therefore your faith.

Don't lose faith! Hang in there, but meanwhile try to feel grateful that you're alive. I know this might sound bad coming from an AB, but I thank God everyday that my fiance is still alive!!! - and while there is life....there is still hope.!!!!!

Chris Reeve's foundation is making a lot of money to invest in this research as well, they say 5 years but meanwhile let's make the best out of the precious life we have ahead of us. Too young, too much ahead to live

[Illinois Boy]

I agree with Tim........
I stopped holding my breath along time ago....

It will never happen in my lifetime....... And if it did, do you realize how long it would take to rebuild muscle mass....

Sorry, it's time to Rock On........
Jim

[wheeels]

Sorry wont happen anytime soon, and unless countries like the US and Canada get off there ass's and loosen the regulations for testing and research you will see it first in countires like China and India that are not as regulated.

[alyssa]

All your posts are so negitive. I am also 22, and also a c4-c6. What happened sucks, no doubt about it, but it doesnt mean you cant be happy and certainly doesnt mean your life is over.You can still work, still find love, still have kids and so on. It just means you have to find different ways to do certain things.

Its not the end.

[wheeliebear75]

I aint holdin my breath on a cure. It might happen it might not..........I don't know. They've made great strides, but strides aren't the same thing as a cure.

Since there isn't a cure on the horizon anytime soon the only thing I can suggest is to learn to be as content with the situation as you can. This isn't the same thing as "liking it" or "being OK with it".......I mean more like a "OK I got dealt a crappy hand.........so I'll just play those cards as best I can" kind of thing. We can dwell on "what if's" all day but it doesn't get us anywhere but further into despairsville.

You CAN find a woman to love and marry you; and you can have children(check out the sexuality and parenting forums). Plenty of quads have jobs and go out with the guys.

At one year this is all still a new change for you. I think as time goes on if we take steps to look for ways to cope and adapt things settle down somewhat emotionally. There are less times where you feel like you're drowning and more times where you'll at least feel like your treading water or at least doing a doggy paddle after a while; then before you know it you'll be looking at you 5th SCI anniversary and you'll be doing the breast stroke.

One of the things you'd mentioned as being so great about your pre-SCI life was going to college. Well go back to college...........it made you happy and gave you a sense of purpose and a feeling of productivity; most major colleges have a disabled student's services that will help with arranging note takers and making sure that your classes aren't inaccessible to you, and if you are in the US Department Of Rehabilitation can help arrange paying for the books and tuition and transportation along with any equipment you might need. Get out there and go for it!

[Tim13]

I agree about the negativity part. Let me rephrase the earlier post...

The way i see it, when a person loses the use of a great deal of their bodily functions, thats about as negative a thing as can happen and unless you were born and raised in a Turkish prison, things are going to be worse than they were before. When you're newly injured, your old life is over-you have a new one now and although it really sucks compared to the old one you have the ability to make it better-possibly even better than what you had before.

While i firmly believe that the very youngest people on this board will live most of their lives injury free, none of us can just sit back and wait for it.

Be a survivor, not a victim.

[wheeels]

I have to say being paralyzed sucks and there are some days that I really really hate it but I still live.
since my accident 6 years ago I have gotten married, had two fantastic kids, got a university degree, got a job that I like, took up downhill skiing, plan to do a triathlon this upcoming summer and a lot of other things.
I would go on about all the things I hate about this situation but really what I have done and can do trumps all that.

[Tired of hurting]

[quote][quote name='aaaa' date='Dec 12 2007, 09:28 PM' post='47598']
is my life realy over,im 22 been a c4c5 for a year, was a college when i was hurt ,life was so good,i looked forward 2erveything,kids,wife,great job,,,my life change an i mean change,i lost my girl but dont blame her ,i cant do nothin 4her shes 22all so,basicly i lost ervrything,,people tell me tht i may walk in the future with tecnology but my life is passin me by,,is there a cure,has anybody been cured ,is anybody tryin 2get cured,,have anybody look in other country 4 a curewill we walk again
[/quote]
Good morning, Some morning it's hard to say that. I too lost my husband of 29 years! He said I didn't try hard enough thats whats wrong with me. He told a marriage counseler he was embarrassed to take me out in pubic. I'm a T 12 with terrible spasms. Had a trial for Baclofen pump yesterday. I wake up in the morning and thank God for the things that still work. I feel for ya. Your Friend Lisa

[chop-02]

I am only 6 months into this injury.Man there are days that do suck..But I keep going..I no there is alot more to new life.. I look forward whats next..I was a truck driver before my accdent.I remember saying theres got to be a better way to make a living..WOW who could predicd this. I would love to be driving now..This is my chance to change my ways..KEEP SMILING BETTER DAYS ARE COMING

[SCIinLondon]

At your age especially, I absolutely think you will walk again, you need to keep your mind and body as healthy as poss. Don't put life on hold as you 'wait', but deinitely look forward to it.

Illinois Boy, on Dec 13 2007, 09:05 PM, said:

It will never happen in my lifetime....... And if it did, do you realize how long it would take to rebuild muscle mass....

Sorry, it's time to Rock On........
Jim

Hi, I'd just like to say that since using my FES bike, my legs are nearly back to pre-injury mass. Building our bodies back to 'working order' will be possible for most

[R R]

Dear All,
I realiy appreciate the way of positiveness. Life is precious.The god has given plenty of opporunities to everybody. I am the father of a son- aged 16 suffering from spinal injury at d11 since 3 years,.
But instead of looking for treatment concentrating on rehabilitation. Since last 6 months my son is able to swim for more than a hour in swimmimg pul. He is also doing very good at studies. Able to walk through caliplers and cruthes.I treat the said development as miracle.
So without worrying for long future one should try to live in present.

All the best and may god blessed all.
R R Patel
rajurpatel@yahoo.co.uk

[carole338]

I keep hearing about the next generation of spinal cord recovery breakthroughs. But I don’t see anyone being helped. Will we walk? I believe, right now, we have to do for ourselves. We have to keep up the exercises and body strength. If a ‘cure’ is found, or a process to reconnect our cord and get us walking again, we have to be ready. I personally believe it will not happen for me because of my age. I’m 65 and know my recovery will be a product of what I do for myself and not what the scientific community will do for me. Most of you are so young and I feel science and the medical field will find a cure in your lifetime and you will walk again. At least, that is what I pray for.

In the meantime let us try to make the best of our situation, especially during this special season. For me and many of us this is our first Christmas or Holiday season that we are unable to walk. I pray the spirit of the holiday helpes us through.

Carole

[Eric]

PITA_Pan, on Dec 22 2007, 05:58 AM, said:

For yourselves, if you want to see continued progress in this research, stay informed and know how the politics is going. Those who object aren't in wheelchairs and certainly don't have degenerative brain disorders. Your voices count. Use them. A lot.

I think it's painfully obvious that those involved with politics ARE suffering from some type of brain disorder.

[edlee]

!!!NO!!!! Get on with it!!!
ed


By the way,,, WTF is with Pita_Pan????

[mad]

f*@k no.

[barber1]

If we dream it maybe if in any small way help contribute to walking again we can do it.

[wheels1974]

I've been a C4-C5 Quad for 16 years and the past 4 years I say I'm a C4 complete due to a African Safari. I've been a compleate Quad for 20 years and I've heard hundreds of so called cures ALL I can say is thank God I didn't sit and wait for them. As hard as it is mate, your first step is accepting your disability after that get yourself into a routine and DON'T even think about all this stuff about a cure because it'll be the worst thing you could do, that I promise you.
IF it eventuates then think of it as a miracle, until then FORGET about it. At the end of the day you can go and enjoy life with what you have rather then sit and wait for something that most likely wont help us either way.

On the flip side, I do believe they will come up with a cure ONE day whether it takes 5 years or 50 years, your guess is as good as mine, but in saying that I believe IF and when ever they do find a cure it will only benefit the newly injured and when I say newly injured I'm talking days, weeks MAYBE a few months. I know I'll NEVER be cured and chances are neither will you although this is one subject I hope I'm wrong about. BEST thing for you mate is accepting your new life and just roll with it YOU will be AMAZED at what you can achieve if you really want it.

Regards
Dean

[SCIinLondon]

wheels1974, on Jan 3 2008, 05:39 AM, said:

I've been a C4-C5 Quad for 16 years and the past 4 years I say I'm a C4 complete due to a African Safari. I've been a compleate Quad for 20 years and I've heard hundreds of so called cures ALL I can say is thank God I didn't sit and wait for them. As hard as it is mate, your first step is accepting your disability after that get yourself into a routine and DON'T even think about all this stuff about a cure because it'll be the worst thing you could do, that I promise you.
IF it eventuates then think of it as a miracle, until then FORGET about it. At the end of the day you can go and enjoy life with what you have rather then sit and wait for something that most likely wont help us either way.

On the flip side, I do believe they will come up with a cure ONE day whether it takes 5 years or 50 years, your guess is as good as mine, but in saying that I believe IF and when ever they do find a cure it will only benefit the newly injured and when I say newly injured I'm talking days, weeks MAYBE a few months. I know I'll NEVER be cured and chances are neither will you although this is one subject I hope I'm wrong about. BEST thing for you mate is accepting your new life and just roll with it YOU will be AMAZED at what you can achieve if you really want it.

Regards
Dean

Whilst I agree that no-one should put their life totally on hold for a cure, we are now for the first time in history entering the 'clinical trials for humans' stage, including for chronic injuries. Whilst there is no guarantee that the results gleaned in labs will translate to humans, there is a very good chance. The human spinal cord is very similar to that of a rodent, aswell as a pig.

I keep hearing the same old 'IF they find a cure it'll only be for new injuries' This simply is not true. The acute [new] and chronic [old] injury solution are 2 seperate issues with, to a degree, overlapping methodology. I would like everyone reading this to be assured that there are groups out there that are not even concerned with acute injuries. Instead, they are aggressively pursuing a cure to chronic injuries, the type that those on this forum have. If you look after your bodies, a chronic cure stands to benefit everybody. To make life easier for when that day arrives I would suggest the following -

-A daily standing regime, say around 60 mins - weight bearing is great for your bones, but standing also helps your circulation, calcium distribution and bowel/bladder mechanisms
-Alternate day use of an FES bike, say around 40-60 mins - great for circulation and rebuilds atrophied muscle mass
-Vitamin D supplements and a diet rich in calcium and vitamin K - all essential for strong bones and if possible, at least 20mins of daylight on the face and hands per day [there are also medical sunlamps you can research too]
-High daily intake of water - great for urinary health
-If you are prone to UTI's, studies suggest the carcinogens emitted by certain uti bacteria can predispose the person to bladder cancer [and using an indwelling catheter increases this risk further still] To address frequent uti's I suggest twice daily doses of hiprex [an antiseptic tablet that can be prescribed] 1000mg of vitamin C and some form of bladder med to control spasticity.

Taking care of yourself makes you feel healthier regardless but I will stress that a cure for SCI is no longer a myth, it is coming. Live for today but look forward to tomorrow.

HAPPY NEW YEAR EVERYONE

[short1]

Hello everyone, I've been paralyzed from the waist down for the past 12 years due to a gunshot wound, in my opinion if we all joined together and voice our outrage that our governments are failing to do anything real to cure our conditions just maybe we can get a real ball rolling, As far as will we walk again this is a really tough question to answer but I really hope we will, It really upsets me to continue to hear about some quack doctor has made a paralyzed rat regain some functions, and then to never hear anything else about the experiment or human trials, man this all seems like a bad roller coaster ride that I really want to get off!!!

[Motor]

My accident happen 3 years ago and all I could move was my big toe. I was 42 when I had my accident and in some ways I am lucky because I already had been married 16 years and have two boys 18 and 19 years old. After a long depression and a time of feeling sorry for myself I decided it was time to shit or get off the pot. With hard work and a new attitude I can now walk 30 feet with a walker. Its not much but hey I thought it would never happen. You have age on your side and new medical breakthroughs daily. I am a T-6 incomplete para. I speak at high schools on behalf of the Darrell Gwyn foundation about the consequences of drag racing or drinking and driving. I activley work with spinal cord injury groups and mentor newly injured people. Get invloved and stay active. I also am now riding a motorcycle again (trike). A harley davidson fat boy. I know the entire shock of the injury is hard to swallow. Bowl and bladder issues spasams etc. Keep your head up and if you have any questions please feel free to contact me. Check my posts and read "my story"!

Sincerely,

Richie aka MOTOR

[bobo2006]

Yes... we will walk again.. if you dream it you can achieve it.. am now 1 year and 1 month old after my accident. I was in hospital for 6 months 9 days and immediately after went back to work, never missed a day of work until the chrismas break. I am now driving a specially modified car and planning to go back to school for my degree. I exercise every day. I walk to the bedroom with the walker (the knees tied with the backslabs). I try to stand with the walker without tying the backslabs and the legs are getting stronger everyday and guess what I BELIEVE AND I KNOW I AM GOING TO WALK AGAIN!!!!!!!!!!! At first i couldnt even use the walker to walk, but when i believed in myself i see myself improving every day.... so you are young and you can achieve it!! dont loose hope but dont also concentrate all your efforts on walking again.... channel your abilities into other areas, school, work, and anything you enjoy and top it up with exercise.. i sleep everyday at midnight because i have to stand and practise to walk everyday!!!

[cripple]

i'm 17 nearly 18 and i'm a c5/6, i have been for nearly three years, the first year is always hare it just takes getting used to. i play wheelchair rugby which definitly helps alot. you should give it a try. i have also been on a couple of back-up courses, which are really good. my advice is, DON'T GIVE UP, JUST HAVE FUN.

[edlee]

Well, I know I'm gonna get blasted for this,,,, but what the hell.

I've seen and read of the above so often that it finally forced me to say something about it.

I can't think of anything that could degrade the public perception of people afflicted with paralysis more than someone hobbling up on stage and telling the audience that through "hard work" and "perceverence" , they were able to overcome.

To be blunt,,, What a load!!!

Remember that the general public is , through no real fault of their own, extremly ignorant of what paralysis really is. Their only experiences are those exhibitions put on to " give us hope" or , worse still, to illicit money for someones charity. Or to help fund someone else's "research" plan ( usually one that wasn't thought out well enough to deserve a grant from anyone else)

Everytime they hear this stuff about effort and willpower, they feel less and less sympathy for those of us unable to "perform". While I want no personal sympathy, you know, as well as I, that their sympathy is the only thing that will get laws changed, monies granted, and people elected to make a real difference in our lives ( and hopes for a cure).

When you're crippled, hard work is a given!!!!! It won't get a complete walking any more than it will make the deaf hear or the blind see. Saying that it will, only diminishes the efforts to find real cures.

While I am happy for, and envious of, incompletes who have developed their skills, I resent their , unsaid, implication that I , somehow, lack their strength of will, or resolve.

Maybe that last,, resent,, is why I wrote this..?? Perhaps I'm just jealous of their possibilies.

For whatever reason I wrote,,, It is still a valid point, that telling the public , personal effort is all that's needed, will make them ( the public) less likely to place a high priority on helping to find a cure.

It's , also, what makes people look at us like we aren't trying hard enough or we'ld be up and walking , too.

Sorry for the rant, Bad mood today, I guess.
ed

[HiltonP]

edlee . . . I agree with you completely.

What really irritates me here in SA are our so-called “elite” international disabled athletes. They all appear to be what I would consider able-bodied. They can talk, walk, see, hear, climb steps, drive un-altered cars, dress themselves, bathe themselves, and wipe their own ar$e$. They are then held up to the public (on tv, in magazines, in advertisements) as examples of what disabled people can achieve, and in turn these athletes sprout forth a whole lot of rubbish about positive attitude, goal orientation, etc.

The “real” achievers, the bad quads, CPers, blind, etc who struggle like hell to keep co-ordination, speak with a slur, and are dependent on personal care assistance, yet still hold world records, are somehow deemed to be inferior and are rarely seen, or celebrated. As someone who competed for many years it galls me. As someone who cannot be “cured” or “improved” with medication or exercise I cannot relate to these “able-bodied disabled” being representative of me or my lifestyle.

[rn_boy777]

hope to walk again by the help of advance medicine like stem cell transplan...

[Martin55]

Just get on with your life and put 'The Cure' to the back of your mind or it will drive you crazy. You could exersise to keep your musle mass but might not work as you might still lose your musles.


Good luck , smile and start living

Martin

[milosh]

i will refuse an opportunity to walk again! almost the only milosh i know is this crazy fella in his chair. i like him. many others do so as well. so, why change? ;)