[DreamWeaver]

Hi. I'm new here. Husband is c5 quad incomplete almost 2 years ago. He was told the window of return is about two years. Since we are close to that mark he is nervous this is the best things will get. Stories of any return after 2 years would be appreciated so I can relay them to my husband and keep him positive and motivated. And is it possible for bladder to return years after injury?Thanks.

[Trinity]

DreamWeaver, on Feb 25 2010, 07:57 PM, said:

Hi. I'm new here. Husband is c5 quad incomplete almost 2 years ago. He was told the window of return is about two years. Since we are close to that mark he is nervous this is the best things will get. Stories of any return after 2 years would be appreciated so I can relay them to my husband and keep him positive and motivated. And is it possible for bladder to return years after injury?Thanks.

Welcome DreamWeaver

There are plenty of people here with stories of return way after the 2 year mark so don't give up! I'm sure they will chime in with their stories.

[StillFingers]

Hey there DreamWeaver welcome aboard!

I'm a c5/6 incomplete and on May 7th it will be 32 years rolling. Please realized that each injury is, can be, tremendously different. No one can really say what return we might and might not get back...it's a crap shoot at best, depending on the severity of the injury.

If I have learned anything from these last three decades...well, here are a few thoughts

1 - Focus on what capabilities you have left and build on them, try not to focus on what you have lost, can't do...
2 - Keep exercising, stretching, range-of-motion and flexibility are incredibly important, as is your weight
3 - Keep busy, physically, mentally and spiritually...too much idle time kills you slowly
4 - Maintain a diary or keep track of your improvements and accomplishments
5 - Pray or meditate or do whatever feels best to keep your spirits up, keep positive
6 - Seek out medical treatment ASAP, do not try to self diagnose or treat
7 - Always leverage the wisdom and mistakes of your peers...don't give up on learning or living
8 - Never give up hope, Live and Love now...the past is gone, the future is not here yet

With that said, to address your, your husband's first concern, I have not regained complete control of my bladder or bowel capabilities. But I have learned how to manage them and have been able to work full-time, enjoy going out, have a healthy sex life. You can have a creative, rewarding and enjoyable life...even if you must wear depends or have help wiping your arse.

As far as other physical abilities, I've not regained finger and other wrist/arm capabilities, but I have been able to strengthen muscles in my arms, chest and back, increase balance and flexibility enough to enable myself to be more independent. Post SCI I've finished college, learned to drive, shop, garden, engage in hobbies, go to concerts on my own, etc...it's a long list of can do accomplishments. I have used both manual and power chairs and highly recommend using a manual chair when/if possible. However, as I've aged my shoulders have gotten worse, take good care of them...

I have regained, much to my surprise and occasion discomfort, near complete sensation. Not just light touch, but hot and cold and the sensation of pressure at the skin level only...for my entire body. As mentioned, there has been increased discomfort, nerve pain, numbness/stinging with this gain in sensation but most of this gain, good and bad, has occurred in the last 18 years, not just the first two years...

I've had a pretty good life pre and post injury. You get out of it what you put into it, and it is about choice. Rejoice in the little things, build on what you have, celebrate, make the best of the life you have left. Never give up though, a close friend of mine with SCI just regained some function in his lower body after a decade of rolling...you just never know what can happen.

A book I read a few decades back spoke to the struggle of SCI, it's author stated...we are extraordinary people living under extraordinary circumstances.

Regards,

Jerry

This post has been edited by StillFingers: 25 February 2010 - 11:38 PM

[Texas Angel Ang]

Very well said Jerry...

March 7 will be 14 years for me and I am still getting return! So hang in there and keep thinking positive.

[rue2you]

My therapist just told me the other day that these places popping up all over like Project Walk (and they have other names) are so popular because they are following latest research and do NOT believe the 2 year rule is accurate anymore. People are getting return of things even after 10 and 15 years or more. It's just that insurance won't pay for these places yet. He said that over time as more and more people are helped, insurances will have to help.

[Texas Angel Ang]

rue2you, on Feb 25 2010, 06:05 PM, said:

My therapist just told me the other day that these places popping up all over like Project Walk (and they have other names) are so popular because they are following latest research and do NOT believe the 2 year rule is accurate anymore. People are getting return of things even after 10 and 15 years or more. It's just that insurance won't pay for these places yet. He said that over time as more and more people are helped, insurances will have to help.

having insurance pay for these type of programs would be so beneficial to all... one can only hope they will finally do it. They have different thinking/attitude!

[rue2you]

I know, Texas Angel, it seems to be a vicious cycle. Most that can benefit from it, can't afford it. If we could all afford it, more would be benefited therefore statistics would go up which would gain the attention of the medical world and insurance would probably be forced to pay. My therapist (which works for a large hospital) says that it is very frustrating for him because he knows these things work but many times his hands are so tied because of insurance and the facility he works for. Some things just take time and time is money so you don't get a lot of time any more.
Do people lobby for this kind of stuff?

[JimG]

DreamWeaver, on Feb 25 2010, 08:57 PM, said:

Hi. I'm new here. Husband is c5 quad incomplete almost 2 years ago. He was told the window of return is about two years. Since we are close to that mark he is nervous this is the best things will get. Stories of any return after 2 years would be appreciated so I can relay them to my husband and keep him positive and motivated. And is it possible for bladder to return years after injury?Thanks.

I'm a T6 incomplete paraplegic who doesn't need a wheelchair other than for long(er) distances and was told 2 years as well (surgery to fix was 8 months ago).

I've talked to other incomplete athletes as well as watching things like Hawaiian Ironman competitions and see people who were still improving 4 years later.

Winston Churchill often said......"Never, Never, Never Give Up"

[DreamWeaver]

thank you to those of you who replied to my question. i am grateful to this website to get some much needed info you don't get in the doctor's office. unfortunately most of my husband's doctors have little sci experience and he's even gone for PT where the therapist didn't know what tone looked like. i'm am greatly encouraged after reading the responses.

[JimG]

I had a coincidental/accidental meeting today with someone that made me think of you and this thread DreamWeaver.

Met a man who broke L5 and C5 and was almost a complete quad, in a hospital bed for the first year.

Second year, he was in a chair, and/or could crawl on all 4s like a baby.

He said his recovery slowly took over 5 years and while he lives with a lot of pain still, he teaches yoga and kickboxing, as well as being a horse trainer for a living.

As we drove away, we saw him run across the street ahead of traffic.

Five years.

Not saying everyone has that recovery, b/c I know they can't/don't.

But his progress took that length of time, and he emphasized patience and persistence and to not give up working.

[Stickman]

JimG, on Feb 26 2010, 07:08 PM, said:

I had a coincidental/accidental meeting today with someone that made me think of you and this thread DreamWeaver.

Met a man who broke L5 and C5 and was almost a complete quad, in a hospital bed for the first year.

Second year, he was in a chair, and/or could crawl on all 4s like a baby.

He said his recovery slowly took over 5 years and while he lives with a lot of pain still, he teaches yoga and kickboxing, as well as being a horse trainer for a living.

As we drove away, we saw him run across the street ahead of traffic.

Five years.

Not saying everyone has that recovery, b/c I know they can't/don't.

But his progress took that length of time, and he emphasized patience and persistence and to not give up working.

Now thats inspiring!

[DreamWeaver]

DreamWeaver, on Feb 26 2010, 05:01 PM, said:

thank you to those of you who replied to my question. i am grateful to this website to get some much needed info you don't get in the doctor's office. unfortunately most of my husband's doctors have little sci experience and he's even gone for PT where the therapist didn't know what tone looked like. i'm am greatly encouraged after reading the responses.

Thanks JimG for the additonal response with that amazing story. Maybe we won't dread the "2 year mark" so much now that I have heard a few inspiring stories and will look at it more like a celebration of surviving the past 2 years.

[cali]

Hi. I am T12 incomplete for two years now, many things returned but I am on the wheel chair and I do not know how long it wil take.

[Tetracyclone]

I suspect that two years marks a psychological point at which many of us decide it is time to get on with life. Life can be more interesting than rehab, and each has to trust our intuition as to whether more rehab is likely to yield results, and when.

As to cost effectiveness, I have come to doing most of the design and implementation of my exercise program, with occasional consults of specializing PTs. Why? They rarely know as much about SCI- I live far from a large rehab center. I started with a new guy last week who can help me with what he knows, but he doesn't know SCI. He asked at the beginning "why don't you go to China for stem-cell treatments?" and with brief discussion he admitted he didn't know squat about the status of stem cell therapy.

The 3 universal laws: Trust yourself Trust yourself, and Trust yourself.

[irish]

Been going to the Y two days a week and working on upper body and abs (good progress on upper body, but not much help on abs) T-4, incomplete. When I'm in KY the local Y offers assistance at no additional cost, but in FL I pay extra for a personal trainer. Either way, it's less cost and more convenient than a PT and just as effective. Since I'm 3 years post, there's not much new or different in the therapy department and assistance, (weight changes, machine settings, encouragement) are more important than therapy knowledge.

Figure I'm saving a few grand a year and can put that into Stander, Electrostim, etc. Am still open to studies, etc as they come along, but not dependant on them.

Works for me

[JimG]

DreamWeaver, on Feb 27 2010, 02:34 PM, said:

Thanks JimG for the additonal response with that amazing story. Maybe we won't dread the "2 year mark" so much now that I have heard a few inspiring stories and will look at it more like a celebration of surviving the past 2 years.

You're welcome.

What made the story more "amazing" for me was that yesterday morning, I caught my left crutch and fell, then had to yell for someone to come help me get back up, which always sort of scares me by putting that little self-doubt in the back of my mind that I won't get better.

On top of that, we were in a specialty store that builds trikes and recumbent bikes and we were there looking at my options to get out and have fun as my legs improve.

[KeepTheFaith]

I work out at Project Walk and every week I see people getting "return" and making improvements 2,3,5,10 years post injury. Go to their website and check-out the numerous stories. Every injury is different and it takes a long time.

[Ratticis]

I'm at 2 1/2 years and got more back within the last 6 months than the other 2 years, spare the 2 months in rehab

[Texas Angel Ang]

rue2you, on Feb 25 2010, 08:34 PM, said:

I know, Texas Angel, it seems to be a vicious cycle. Most that can benefit from it, can't afford it. If we could all afford it, more would be benefited therefore statistics would go up which would gain the attention of the medical world and insurance would probably be forced to pay. My therapist (which works for a large hospital) says that it is very frustrating for him because he knows these things work but many times his hands are so tied because of insurance and the facility he works for. Some things just take time and time is money so you don't get a lot of time any more.
Do people lobby for this kind of stuff?

I'm not sure if people lobby for this kind of stuff... I know a lot of people lobby for stem cell research (which is great and all don't get me wrong) but at the end of the day you're still going to need to work out and have therapist that have the right mindset/attitude!

(Sorry for the delayed response, I have been sick, once I start feeling better... I'm going to start working out again!!!)

[DreamWeaver]

hey jimG.

sorry i took so long to respond. haven't been on the site for a little while.

sorry to hear about your fall. hope you are ok. my husband has fallen about 5 times since re-learning to walk. it definitely scares him into being more cautious and slows him down. but luckily he hasn't re-injured anything and he's able to keep trying. he can walk about 100 feet w/forearm crutches and then his stamina runs out and his back pain forces him back into the wheelchair. but after reading your post about the guy running across the street, i'm staying hopeful!!!

[JimG]

DreamWeaver, on Mar 17 2010, 02:41 AM, said:

hey jimG.

sorry i took so long to respond. haven't been on the site for a little while.

sorry to hear about your fall. hope you are ok. my husband has fallen about 5 times since re-learning to walk. it definitely scares him into being more cautious and slows him down. but luckily he hasn't re-injured anything and he's able to keep trying. he can walk about 100 feet w/forearm crutches and then his stamina runs out and his back pain forces him back into the wheelchair. but after reading your post about the guy running across the street, i'm staying hopeful!!!

I'm good for most places with the crutches if I'm not walking more than a couple hundred yards.

If I need to go further than that, I make the decision whether to pull out the chair, or the walker (one with the seat). If it's hilly, or rough surfaces.....chair only.

I fall occasionally.....that's just the way it goes when you're transitioning to walking.

The worst falls are down stairs.

It scares my wife more, but it's more embarrassing for me, even if it's just in front of her.

[ray_m]

Coming up on 4 years (C5 Incomplete) and still seeing improvement. Improvement is not a steady slope but rather a series of forward gains and reversals where the reversals are smaller than the gains.

I've got a T-friend who is seeing an improvement in sensations after 32 years!

[Tetracyclone]

I'm not quite 2 years, so my experience does not qualify to contradict the 2 year hogwash. last May I could climb the stairs and walk 500 ft with a walker, then a nerve problem in my right arm forced me to quit those activities for 6 months, though I could still use the exercise bike. In January I began walking a bit again after surgery. Saw a new PT who offers help with postural problems. I am now learning to walk again very differently, using some muscles I'd thought unavailable. I don't know how much stamina I will be able to develop, but my goal is to be able to go places without the WC. Still have not relearned the stairs.

[DreamWeaver]

Hey Tetra: Can you tell me how you are walking differently with new physical therapist? My husband has foot drop and is unable to lift right knee and has chronic back pain from "hip hiking". He too has muscles we consider unavailable. Just wondered what they were able to teach you new...Thanks!