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  1. #1
    Senior Member
    Join Date
    Nov 2001
    Upstate NY

    My Own Walking Program

    This is gonna be a long post, so bear with me if you like...If you can find anything useful, great! Any advice or suggestions, please share!

    I'm a T-12 incomplete, injured just under a year ago. Since I was well enough physically, I've been doing everything I reasonably can to improve my ability to walk, with the hope - like just about everybody on this forum - that someday I will be able to get up out of this chair and move around like I used to. And like most people here, I don't have the means to go enroll in some intensive physical therapy program in some other part of the country or world involving months or years and exorbitant sums of money. So, with the help of my husband I've been doing what I can, designing our own program as we go. Some things work, some don't. What doesn't work, we change. Or discard. Progress is agonizingly slow. But that's expected. I've got nothing more important to spend my time on now. So, if it takes even years to get to where I want to be, so be it.

    Last winter, here's what I had going for me: weak quads and hamstrings, a hint of glutes. Tightness that prevented me from flexing my hips or straightening my knee. Two feet with foot drop bad enough that I stood on my toes, and it was very difficult to force my feet flat even after extensive weight-bearing.

    I believe that, in order to walk again, I have to - walk.

    Here's what I've done thus far toward that goal:

    1) Standing frame - we built one in January, since getting weight on my legs seemed critical to improvement. I especially thought it was essential for straightening my feet. I used the standing frame every day, for about an hour.

    2) Stationary bike - I had one already, with a flywheel. I decided to try it and see whether I could make it work with my weak quads. Much to my surprise, I could - at a real light resistance. So I started out riding it almost daily for 5 miles, and gradually increased the resistance once I could do the 5 miles in 30 minutes. Then I just kept upping the resistance.

    3) Pool - in February, my husband and I joined the YMCA, which has a Hoyer lift to get me in the water. I've been going 5-6 times a week since. I started out with exercises for the muscles in my legs I could move. I also started walking in the water. I found that I could walk by hanging onto my husband's arms with him walking backwards. At first I could do about 30 feet. I worked up to 600 ft without stopping.

    4) Walking - In April I was invited to demo a Lite Gait system that the PT at the rehab center where I had done my inpatient therapy borrowed for a seminar for PT's. I was pretty excited to try it. After a few sessions, the PT suggested I start therapy again, this time for walking. In May I started, which meant 1 hour twice a week. Since I was the guinea pig for the lite gait, it was a learning experience for everyone involved. What I discovered was that I could walk, though not ideally. What the therapists discovered is that it's VERY labor intensive for them, requires at least 2 PTs. We ended up doing other things in therapy than the lite gait.

    First, my feet had to be fixed. An orthotist fitted me for AFO's, which I wore only a few hours a day at first to prevent pressure sores, then gradually increased the time, so that now I wear them every day all day long. They've done great things for my feet. At first it was only possible to get them on after being the standing frame for at least 20 minutes, then some serious stretching. All this we did every morning. It was about a 45 minute routine. Now, after 2 months my husband can put them on with no prior stretching, and both feet go past neutral.

    Next, stretching my hips and my knees. This is really important because with me unable to stand up straight, there was no way I would be able to walk correctly. The best way to stretch is standing up, with one foot forward and the one being stretched back. Then the lower calf is pulled back while the hip is pushed forward.

    I did a lot of walking in the parallel bars, generally with stretching at every step for the first few passes, then without. When I had enough range of motion and my feet were flat enough, I started using a walker.

    My PT has also had me do stairs. She feels that, by first challenging the muscles to do more than they realistically can do, they'll perform better on what they are able to do. She might be right. I always do better walking after doing the stairs than before.

    Where I am today:

    1) I walk EVERY DAY at home. I do a bunch of stretching before walking. Using a walker, I've gone from 20 ft when I started, to 63 ft, which is as far as my house will allow without me turning around. I can do this 4 or 5 times with a short rest in between.

    2) I just got a set of parallel bars. The stretching is easier and faster. And, I can walk when my husband isn't home

    3) I swim laps in the pool now. I need to build my endurance, I need the cardiovascular workout, and weight-bearing walking is better than walking in the pool.

    4) I don't have time to ride the stationary bike every day. I push for endurance, still doing 5 miles.

    5) Two weeks ago, my PT decided to see how I would do on a treadmill without weight support, just with handrails, so we tried it. Much to everybody's surprise - including mine - I did! So now, I do it at home. Most days I use the treadmill instead of the walker. My record so far is 116 ft at 0.6 mph. My record for one day is 675 ft. This is in 1½ weeks of walking on the treadmill. Is it hard work? You bet! Is it worth it? Oh, yeah!

    6) My quads, hamstrings and glutes are stronger. I know I'm likely still recovering - just a few days ago, I found my plantar reflex has returned. And, if I try to extend either foot, toes move. First time ever! But I also know that, regardless of how much return I get, my muscles have atrophied so much that I'd have to work really hard to get them back to usefulness again even if I recovered fully! So if I hadn't done all this stuff - the pool, the standing frame, the stationary bike, the walking - I'd still be sitting in my chair wondering if I would ever be strong enough to get up and walk.

    What got me this far:

    1) A fantastically supportive husband who won't quit, who works as hard as I do, and who'll go to any lengths to get me on my feet.

    2) A really good PT who's willing to take risks, who pushes me hard, who recognizes how much I do outside therapy, and who listens and is open to ideas.

    3) Doing all this every day, putting forth the effort, even when the only time available is at the end of the day, because to me there is nothing else more important than doing everything I can to walk again.

  2. #2
    Super Moderator Sue Pendleton's Avatar
    Join Date
    Jul 2001
    Wisconsin USA
    WAY TO GO SUE AND HUBBY!!!!!!!!!!

  3. #3
    Senior Member X-racer...'s Avatar
    Join Date
    Jul 2001
    Eugene, OR
    thats great SueB keep up the good work


  4. #4
    Way to go, you are lucky to have so much support!!

  5. #5
    Awesome SueB, congratulations!

    Amazing what some ingenuity and hard work can do.

    I believe you will achieve your goal.

    Onward and Upward!

  6. #6
    Junior Member Mungos's Avatar
    Join Date
    Jul 2002
    Ottawa, Ontario, Canada

    Walking and incopmlete - Bo Bath.

    Great to read and inspiring story, here is something else you can try wiht PT it's a therapy called Bo Bath, (that's how it's said, spelling "ain't" my strong point) My roommate from rehab is a incomplete c6 and is walking now with a cane he has been doing Bo Bath for a while now and it has helped him with posture, breathing and walking. I don't know much about it other than it's used in stroke patients but recently somebody had a stroke of genius and decided to try it on incomplete SCI and it has helped so ask your PT good luck and all the best. I think it has to do with aligning the muscles properly and using the right muscles for the right action and not compensating with surounding muscles that have been back for a while. I hope this makes sence.


  7. #7
    Hi, Sue. It appears that we have traveled some of the same road while learning how to walk again, and doing everything at home. I have not posted my story or struggle to walk again, but I did it all from home. I did not use hydrotherapy but I did the standing frame, stationary bike with fly wheel, rowing machine, AFO braces, walker, PT table or mat, and I had a physical therapist come to my home on several ocasions for advice. By the way, my friend Jim built the mat in one afternoon, and another volunteer made the standing frame.

    Thanks for sharing your story.


  8. #8
    Senior Member
    Join Date
    Nov 2001
    Upstate NY
    Thanks, everyone. It's unbelievable how supportive my husband is. It's like having a live-in therapist.

    Mungos, thanks for the info on the Bobath concept. I've never heard of it. I found a little info on it, lots of it in German, so it didn't mean anything to me. But it sounds like the Bobaths had an approach to therapy that makes sense to me. I'll ask my PT about it. I found a link in English that described it:[/url]. Plus, another related site for NDT (Neuro-Developmental Treatment

    PN, the treadmill has been a great addition, and I think (hope) it'll accelerate the walking. We set it up so I could use it for partial weight support or not. I made a harness, and we rigged up a support system with climbing gear and a simple hoist. Now I still wear a harness when I use the treadmill, but it's just a safety harness - no weight support (actually, it's one of my skydiving harnesses). Just in case I fall. Eventually, I want to feel comfortable enough not to need it. How long have you been doing your home therapy, and how are you doing?

  9. #9
    "PN, the treadmill has been a great addition, and I think (hope) it'll accelerate the walking. We set it up so I could use it for partial weight support or not. I made a harness, and we rigged up a support system with climbing gear and a simple hoist. Now I still wear a harness when I use the treadmill, but it's just a safety harness - no weight support (actually, it's one of my skydiving harnesses). Just in case I fall. Eventually, I want to feel comfortable enough not to need it. How long have you been doing your home therapy, and how are you doing?"

    Hi Sue,

    I was injured in July of 1987 and I think that I started to learn how to walk again in January of 1989. I am an incomplete injury and I started to visit one of the local sporting good stores. My first purchase was a stationary bicycle. A few months later I ordered a BX1000 EMS machine from a company called Bloomex, which is now located in New Jersey. Shortly after I arrived home from the hospital, I decided that I would get down on the floor and try to start crawling; thinking that this is how babies begin and perhaps I could retrain my nerves in a similar sort of way. I also purchased a Universal Gym and I strengthened my upper body as best I could by doing sit-ups, lat pull-downs and butterflies. When I first started walking I had my AFOs on and my walker with arm troughs, along with a PT belt. In the beginning it would take me about an hour to go 45 feet and I would start at the left corner of the parking lot and end up at the right corner of the parking lot. Working out 6 hours everyday I was eventually able to cover the 45 feet in about 2 minutes and this took about three or four months.
    I always had to look down at my feet because I did not know where they were, but that changed about a year and a half later. Now I no longer need to look at my feet when I walk and I have a better sense of where they are than I did before. However, if I was lying down I know I would still have a difficult time knowing exactly where my legs and feet were, unless I was looking right at them. I hope I have answered your questions. Congratulations and good luck with your recovery!

    By the way, I can no longer do 6 hours of rehab everyday and I have had to cut back to about two and a half hours. I reached a plateau a long time ago.


    [This message was edited by PN on Aug 01, 2002 at 09:17 PM.]

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