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Old 05-18-2019, 12:43 PM #1
Ganna Ganna is offline
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Default Wheelchair?

I was wondering if anybody here was in a wheelchair for years and managed to get back on their feet? I've been in mine for 10 years now and I want to walk again so badly. Any success stories? I am no longer on any therapies. I have done avonex 7 yrs, rebif 3 yrs and copaxon 7 yrs. I now only take baclofen when necessary.
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Old 05-19-2019, 12:28 AM #2
Starznight Starznight is offline
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I was never permanently wheelchair bound, but thanks to a baclofen pump, was able to pretty much kiss it goodbye. I still have times where I probably should use it, and am really prone to pushing myself beyond the beyond sometimes (most times) but, it really is an individual thing for getting out of a wheelchair. Much like our symptoms, sometimes they hibernate well enough for us to think we’ve regained more than we actually have and sometimes they just knock us down and out.

As to why a wheelchair for me, I had intense spasms that were quite literally tearing my legs apart, tendons shredded in my ankles by them, acl and mcl ripped, and if all that wasn’t bad enough before then they had broken my back in the lumbar region. And after a series of relapses one significantly terrible on that left my dominant left side completely numb, I thought for sure not just being stuck in a wheelchair for life but needing to find a power chair was going to be my future.

Lots and lots of very painful exercises later (which I do no recommend doing I was very very rough with the poor body) I managed to regain some movement on that side though everything is still deadened to this day even my vision on that side is messed up. At the same time I figured by that point a baclofen pump couldn’t make things any worse, so I got one put in.... LIFE CHANGING for me.

Without nearly as severe of spasms the tendons and ligaments have had a chance to heal some. I get better sleep (still an insomniac hence typing a response at 1 am) but when I do get to sleep it’s far more restful leading to less fatigue which was another huge factor in using a wheelchair.

So I definitely won’t say it’s hopeless, but nor will I say simply exerting some extra will power will work either. It depends on why you’re in a wheelchair, pain, fatigue, numbness, weakness.... and the cause of the symptoms aside from well I have MS so... there are various therapies out there that may help you depending on the symptom and cause of the symptom. And yeah just a little bit on how much fight you have left to give to say goodbye to the chair and what you might need to trade out to gain power over your own two legs. I wear two afo’s, have to go every three months to get my pump filled, still have additional medications I have to take and some more depending on the day and my symptoms, and my mobility has also come with 4 o’clock naps that no matter what the schedule is for my pump, I’m still down for the count by 4 and miss dinner many a night.

My pump occasionally moves around requiring the painful process of getting it back into place (but then I don’t scar and didn’t realize that it was scar tissue they depend on to hold it in place...) all my jeans have to be hip huggers, or elastic waisted pants, which sounds like nitpicking the cons, but really not my style or “comfy” to me so it’s another price to be paid, never again being able to wear my favorite, flattering and comfy outfits again.

Do I still think it’s worth it, heck yeah! But that’s for me, and in the now, give me another relapse or two and I might change my mind. I mean pros and cons to both, but will say it won’t be easy or happen overnight if you can recover. It will be hard, there will still be crappy things that some days may have you questioning if it’s really better, but talk it over with your neuro, let them know you are serious about wanting out of the chair. There are rehab centers to help with that too, and regardless of what they say, keep the hope, medicine changes practically daily. Today there maybe no hope and tomorrow morning there may be a break through.
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Old 05-19-2019, 11:23 AM #3
Ganna Ganna is offline
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Quote:
Originally Posted by Starznight View Post
I was never permanently wheelchair bound, but thanks to a baclofen pump, was able to pretty much kiss it goodbye. I still have times where I probably should use it, and am really prone to pushing myself beyond the beyond sometimes (most times) but, it really is an individual thing for getting out of a wheelchair. Much like our symptoms, sometimes they hibernate well enough for us to think we’ve regained more than we actually have and sometimes they just knock us down and out.

As to why a wheelchair for me, I had intense spasms that were quite literally tearing my legs apart, tendons shredded in my ankles by them, acl and mcl ripped, and if all that wasn’t bad enough before then they had broken my back in the lumbar region. And after a series of relapses one significantly terrible on that left my dominant left side completely numb, I thought for sure not just being stuck in a wheelchair for life but needing to find a power chair was going to be my future.

Lots and lots of very painful exercises later (which I do no recommend doing I was very very rough with the poor body) I managed to regain some movement on that side though everything is still deadened to this day even my vision on that side is messed up. At the same time I figured by that point a baclofen pump couldn’t make things any worse, so I got one put in.... LIFE CHANGING for me.

Without nearly as severe of spasms the tendons and ligaments have had a chance to heal some. I get better sleep (still an insomniac hence typing a response at 1 am) but when I do get to sleep it’s far more restful leading to less fatigue which was another huge factor in using a wheelchair.

So I definitely won’t say it’s hopeless, but nor will I say simply exerting some extra will power will work either. It depends on why you’re in a wheelchair, pain, fatigue, numbness, weakness.... and the cause of the symptoms aside from well I have MS so... there are various therapies out there that may help you depending on the symptom and cause of the symptom. And yeah just a little bit on how much fight you have left to give to say goodbye to the chair and what you might need to trade out to gain power over your own two legs. I wear two afo’s, have to go every three months to get my pump filled, still have additional medications I have to take and some more depending on the day and my symptoms, and my mobility has also come with 4 o’clock naps that no matter what the schedule is for my pump, I’m still down for the count by 4 and miss dinner many a night.

My pump occasionally moves around requiring the painful process of getting it back into place (but then I don’t scar and didn’t realize that it was scar tissue they depend on to hold it in place...) all my jeans have to be hip huggers, or elastic waisted pants, which sounds like nitpicking the cons, but really not my style or “comfy” to me so it’s another price to be paid, never again being able to wear my favorite, flattering and comfy outfits again.

Do I still think it’s worth it, heck yeah! But that’s for me, and in the now, give me another relapse or two and I might change my mind. I mean pros and cons to both, but will say it won’t be easy or happen overnight if you can recover. It will be hard, there will still be crappy things that some days may have you questioning if it’s really better, but talk it over with your neuro, let them know you are serious about wanting out of the chair. There are rehab centers to help with that too, and regardless of what they say, keep the hope, medicine changes practically daily. Today there maybe no hope and tomorrow morning there may be a break through.

Thank-you for your reply. I went from a cane to crutches to rollator to wheelchair to power wheelchair. My legs kept getting weaker and heavy. I fell down quite often. Dr., family, and friends, encouraged me to sit. To this day I don't know if that was the answer. I can still stand and pivot, for which I am very grateful. One day at a time. Take care.
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Old 05-20-2019, 12:14 AM #4
Starznight Starznight is offline
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After being encouraged to take a seat, have you done any physical therapy since? Or do you exercise your legs at all? Swimming, peddling, sitting marches... even if it may not help you leave the chair completely, continuing to do what exercise you can with your legs will help in keeping you able to stand and transfer. Not to mention an overall feeling of accomplishing something , keep the blood pumping and all that.

So if you’re not currently in PT, I would give the doctor a call and ask, sometimes doctors are prone to why push yourself when you’re on a degenerative path, live more comfortably, enjoy the posh life.... sometimes we need to let them know that not all of us enjoy being couch 🥔

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Side Effects: may cause dizziness, drowsiness, bleeding from the brain, heart explosions, alternate realities, brain spasms, and in rare cases temporary symptoms of death may occur.
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Old 05-20-2019, 07:51 AM #5
Ganna Ganna is offline
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Join Date: Feb 2019
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Ganna Ganna is offline
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Default Wheelchair

Quote:
Originally Posted by Starznight View Post
After being encouraged to take a seat, have you done any physical therapy since? Or do you exercise your legs at all? Swimming, peddling, sitting marches... even if it may not help you leave the chair completely, continuing to do what exercise you can with your legs will help in keeping you able to stand and transfer. Not to mention an overall feeling of accomplishing something , keep the blood pumping and all that.

So if you’re not currently in PT, I would give the doctor a call and ask, sometimes doctors are prone to why push yourself when you’re on a degenerative path, live more comfortably, enjoy the posh life.... sometimes we need to let them know that not all of us enjoy being couch 🥔

Thanks for replying. Yes, I have gone to PT several times in the last 18 yrs when I was dx. Going to start again soon at a place that also offers functional and naturopathic Drs. Take care.
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