Walking incomplete paras question

[alpentalic]

Mind if I piggyback off the original topic and ask how many walkers continue to notice any improvements, however minuscule? I'm pretty inc c5/6 and can ambulate/"walk" a little. I do whatever I can to work my legs/body (it's never enough) and notice a slight change for the better every few months or so. Still, I'm a ways off from disco dancing.

I use a walker, can't get my right leg to work well enough with crutches. My hips are the first thing to give out, they jut to the side, then my lower back slowly caves and it becomes a feat of upper body strength after that. It's too easy for me to get lazy and rely exclusively on my chair which quickly erodes any gains I've made. However, for the first time in 27 months, I can free stand long enough to get my pants up and buckled if I'm quick about it.

[arndog]

Alpentalic - I am noticing improvement still after 7 years. Now that I am fused from my sacrum to T11 both anteriorly and posteriorly, I can finally walk without pain. My endurance is increasing - but I am not getting any new muscle groups working since 14 months after the injury.
But I am ever optimistic and never forget how 'lucky' I am to be crutch walking at this moment.
Hlh - regarding your question of how far I can walk, you of course know that all of us incomplete paras have different patterns of functional return and thus I am not sure how relevant my walking may be to your dad's situation. But with that said, I can walk with crutches for 2 hours at 2 mph on flat terrain so far. With just a cane, one half hour would be my guess. And without holding on to anything except an occasional wall, I can lurch around the house from my office to the kitchen. Before the surgery, I could crutch walk for .5 hour and I was trashed from pain. That seems to be gone (knock on wood). I couldn't walk without some assistive device in my hand. How much exercise? - I workout as much as I can but avoiding too much pain. Over use of the legs will worsen neuropathic leg and pelvic pain - So now I am trying to walk 1.5 hours/day with canadian crutches which is both legs and upper body exercise . I am 52 where as your dad is 65.
I totally agree with your question in the 3rd paragraph about how hard do we push, for what gain, and what are we sacrificing by doing it. I ask myself this. I can't go through that surgery again so I don't want to screw things up. I was such a physical person before my injury, it was how I defined myself and it is hard to give that up . So I push hard to walk and improve.. It becomes a philosophical/existential question really.

[alhavel]

I can walk without a cane now, it's almost 5 years since the accident. Not much pain, until I stop, then it drives me crazy. I often wonder when it will be too much to do, I'm 49. But I won't give up for now.

[arndog]

Alhavel - May I ask you what was your injury level and functional loss is? Do you use an AFO? Foot sensation?
curiously yours,
jon

[alhavel]

Injury level? I'm not sure, I've got 2 18" long rods in my back, crushed skull, was given a wheel chair and told it would be my best friend. I've gone from a chair, to a walker for a few years almost back to a chair and then was able to use the walker and then a quad cane. Last year I ditched the quad for a single cane, and now I'm starting to progress.

I'm a long way from what I was. I spent 8 weeks in a coma, and it wasn't good. In general I'm a busted up mess, and I won't give up the dream of walking normal again.

No AFO, lost alot of feeling, but it's coming back, much to everyones surprise, they told me I was too old. i'll never give in.

Oh, a building fell on me.

[dunwawry]

I wanted to chime in. I am a C3/C4 incomplete, Central Cord syndrome, which means the upper body is affected more than the lower body. I am 13 years post injury. Although initially I was completely paralyzed from below the neck, I regained full use of everything. My main limiting factor has been weakness and spasticity. Initially I used a walker, but got rid of that within the first year, although my doctor wasn't particularly happy about it, as I was falling pretty regularly. I still fall occasionally, but it is happening less frequently all the time. I would say I am probably now averaging a couple times a month.

First, to those who have newer injuries, and have been told that recovery ends after two years, or even five years, or seven years, I say t'ain't necessarily so. I know that I am continuing to improve, I have made significant gains even in the last year. I am not sure if they involve actual neurological healing or if it is a result of work I have done, maybe both. One of the things I did was to get involved in Pilates. It helped ALOT with my balance issues and strengthening my core which was super weak. I have since dropped it, since it was quite expensive, doing it right involves at minimum semi-private instruction, and I had chosen an instructor who was also a PT. However I got my doctor to write an order for PT which got the first three months covered, then I paid for another three months out-of-pocket, a bit less frequently. The other thing I did was to join the YMCA and start swimming laps 4-5 days/week. I have worked up to being able to swim a mile (well, okay, I use flippers). Not only has this helped to tone me, but it seems to help quiet my spasticity, which is usually the cause of any falls. Fortunately the Y I joined keeps their pool pretty warm, about 84 degrees or so, I know from past experience that cold water is counter-productive. I was walking so well one day that my Rolfer saw me walking up his driveway and mistook me for my able-bodied sister, which I took as the ultimate compliment since he has an incredible eye. I credit him for the final piece of the puzzle as far as my most recent improvement, he has a better understanding of how the body works and moves than any of the many PT's I have worked with, and has been able to give me the images and exercises I need to make my gait more "normal". For example, one was teaching me to "salsa", to unlock my torso and to get my hips to start rotating as I walk (like "normals"), something I could also practice in the pool with the kickboard.

I do understand that I am most fortunate in that I have gotten more return than most on this forum, and that most of you will continue with significant limitations despite your best efforts. However, I also think that with some creativity and hard work, we can make the most of the cards we have been dealt, and possibly reach new heights we never dreamed were possible. In the last year, and again, this is after 13 years, I have improved enough to finally be able to return to nursing, although I am limited in the types of jobs I can accept, certainly nothing physically demanding, something I never thought would happen. I had already tried to get a desk job but nobody would hire me without recent clinical (hands-on) experience and I couldn't get clinical experience due to my physical limitations. I have also discovered that I have to keep up with my swimming and some weight-training thrown in as well, or I start losing the gains I have made (cracked my sternum during a fall in Sept., then developed pleurisy, requiring a mandatory break, still catching up), so there is some commitment involved. Some people exercise because they enjoy it. I don't, I wish I did, it is time-consuming and boring. I exercise because if I don't, I lose function. So, for those of you who are still struggling with walking, don't give up. Maybe you will be as fortunate as I was and make some significant gains also, that is my wish for everyone.

Woman from Europe, my doctor told me that after 60 I would start to decline. He explained something about axons or neurons or something aging, happens even in the able-bodied, but it having a more noticeable effect with SCI. I suspect he is right, he has a bad habit that way, but I have another 10 years, and maybe, just maybe, there will be progress with a cure by then. I know that doesn't help your situation, and for that, I am truly sorry. I also don't know how old you are, and if this even applies to you, I don't mean to presume that you are older than you are, or if it is instead length of time since injury that applies for you. In any case, it must be very discouraging, to say the least, to have worked so hard to improve and then to lose it again. I know how I would feel, and my heart goes out to you. And alhavel, I will be 51 in another week, and no, we are NOT too old. Who told you that (some baby-faced 30-something doc?), I need to have a little chat with him!

[alhavel]

Dunwaray,

And alhavel, I will be 51 in another week, and no, we are NOT too old. Who told you that (some baby-faced 30-something doc?), I need to have a little chat with him!


Actualy, it was a HER and she never came any closer than 5 feet away in the first rehab place I was in, they also went out of business!!!!!!!

And you're right, they are wrong. My doctor of late has had the oppurtunity to meet, my father, and also become his Doc, and could not believe that he was 76 YO and went into shock, my response? Now you see my problem....... His grandmother was 106, and grandfather 104. No modern medicine did they persue. I'll see if I can find this "bitches" phone number for you. Hey, you're only as pretty as you feel.

But, in light of all this, I know one day it may all come tumbling down, today My neuro pain in my feet is screaming, but, I don't let it stop me. It's been along hard haul from the start, even though I don't remember a damn thing and hope I never do. So much healing can come from within, the body must trigger some things to redevelop, if you can push it. I felt this all along and continue to do so,

Right now I'm finishing building a new boat for me. My father doesn't know what I'll do with it, my response??? "Let''s get finished, and I'll work out all the small details". This is the incentive I need to drive me forward, push the boundrys, and occasionaly fall and get up. Just to start running again. I've got to move everyday to hold onto the gains I've made, or I slide faster than on ice backwards.

[woman from Europe]

My problem is I am 39 years post, I was 15 when I got the SCI. And the doctor who told me about SCI and aging first was Wise Young and then the best SCI doctor here, Nils Gjeltnes, in the SCI hospital. I have taken tests, EMG, it shows no axons left and I am overused, my working muscles in my leges were showing they were used 12 times more than normal. And I am loosing myelin.

And I am sorry I can't explain better in English, I hardly understood it in Norwegian when they explained it to me

But one good thing, I have stopped being worse and I still have my B&B under control, except all the utis.

[arndog]

Dunwawry - Your story is very moving. Thank you. I can tell how hard you work to get the gains you have. A lot of that is your personality type; hard driving, unwilling to accept defeat or mediocrity.
I agree with you that it takes hard work, every day and gait analysis (like you received from your Rolfer). Prior to my injury, I used to skate ski (nordic) which is very technical and rock climb which requires balance, kinesthetic awareness, and insane effort. These activities have made figuring out the 'walking game' easier. It is a puzzle. I am 52 and still making improvement too.
WFE - You are 'only' 54. But to be 39 years into this SCI versus my 7 years must take its toll on the leg muscles you had. I can't imagine 39 years of SCI and I can't even nor want to think what it will be like 10 years ago when I am 62.
Jon

[Hunker]

I am a para and the hospital stole my shoes!