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Thread: Dr. Young Is Project Walk a good program?

  1. #1
    Junior Member shmily524's Avatar
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    Dr. Young Is Project Walk a good program?

    Hi,

    I just found the website "Projectwalk.org" and I've read through it. It seems like a good program. The only thing that concerns me is that there are no physical therapist or doctors (yet) on staff. They are exercise physiologist.

    Has anybody on this list done this program? My husband is seriously thinking of going in January for 3 or 4 weeks.

    We aren't expecting a miracle but we think with Bob's injury being low (L1/L2) and his ability to walk with a walker. This program may be a really good push towards getting him walking with a bit more ease.

    Thanks for any feedback.
    Dee

  2. #2
    Shmily,

    I would advise you to check into the Neuro Institute ("NI" www.theneuroinstitute.com ) in Phoenix and SCI Step (somewhere in Ohio I think) as well. Be a good consumer and check on prices, living costs, and consumer satisfaction.

    As a client of NI I personally have seen two walking paras (one is getting married soon and wants to wlk up the aisle unassisted . . . no canes, crutches, etc and it looks like he might just do it) and a walking quad. Their results have been pretty amazing. No miracles, but through hard work and with the right protocol great things can happen.

    Good luck.

    BTW: If you do a search on Project Walk on this site you will find a number of threads addressing their work

  3. #3
    shmily524 (dee), I don't really know. I first heard of the program through these forums and have read the postings that people have made, including people from Project Walk. If you do a search for Snowman, you will find almost all the topics that contain substantial information on Project Walk.

    Recently, I met several families from Amarillo who went to San Diego and spent several months in Project Walk. I asked if they were glad that they did so. They seemed satisfied by the experience although I am not sure how much functional recovery resulted from the experience. However, I am not sure that any place in the world currently has all the answers concerning the optimal ambulation training and so we should not expect Project Walk to have all the answers.

    It is important to emphasize that the success rate of the program depends very much on who they accept into the program. If they are accepting a high proportion of clients who are ASIA A, they probably will not produce a high percentage of voluntary walkers. Likewise, if they accept people who have already done substantial amounts of training, they will probably have lower success rates. On the other hand, if most of their patients are ASIA C or even ASIA D and particularly people who have never tried to walk before, their results are likely to look good.

    The people who are running Project Walk seem to be honest and straightforward. While some people on this site have criticized the rising cost of the program, Project Walk seems to be relatively inexpensive compared to costs of similar programs in rehabilitation centers. Maybe this is because they don't have doctors and other therapists working there. I have not heard of the place doing anything that is dangerous or harmful to people.

    About a dozen centers in the United States are now doing research to determine whether and the optimal training that should be applied to people with incomplete spinal cord injuries to restore function. While several places in Europe are beginning to report that ambulation training for people with "complete" spinal cord injury will improve walking and postural reflexes, none have reported recovery of voluntary locomotion. This is consistent with animal results as well.

    Some rehabilitation centers are recruiting people with "incomplete" spinal cord injury (mostly ASIA C) for ambulation training. Several places in the United States are training people with ASIA B (i.e. some sensory function but no motor). For example, I know that they are doing this with Kessler. I am not sure that there are any places that are recruiting ASIA A patients. Joining one of these programs or trials is probably the best deal around in that you will not only get the benefit of free training and also contribute to the research at the same time.

    I wonder if Project Walk has applied to NIDRR for funding for their program.

    Wise.

  4. #4
    Senior Member Rick1's Avatar
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    Dee - larwatson's approach makes good sense. I think all three programs are based on sound principles. Your background should help you to identify with the concept. Regarding doctors and therapists (in general): One reason I'm so excited about these programs is that they are not restricted by the narrow thinking of conventional rehabilitation therapies. They really are breaking new ground.

    Good luck!

    Life's challenges are not supposed to paralyze you. They are supposed to help you discover who you are.

  5. #5
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    Hi Shmily
    I am presently at Project Walk. I had a check up at Crag in May 02, and I was still a C6-complete. I started in Jan. 03. Now my core muscles are coming quite well, and on some days I can give good resistance with my legs.
    I am starting to feel my abs too. When changing my supra tube I never use to feel it. Then last month (end of March) It hurt so bad that it brought tears to my eyes (it hurt so good that I wanted to jump out of bed.) At 2 1/2 months in the project that's not to bad!! I am 3 years post injury now, and beleve that I've had more recovery in the last few months then the other 2 years,9 months. It takes some time though. Exercise the nerves then the muscles.
    I am also taking 40mg. of 4AP per day, and just started lasr puncture.
    There is some new info on the web at: www.projectwalk.org
    STAY HEALTHY AND ACTIVE

    Rand

    [This message was edited by Randy on 04-17-03 at 09:00 PM.]

    [This message was edited by Randy on 04-18-03 at 10:17 PM.]

  6. #6
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    Dr. Young: You mentioned in a previous post that

    "about a dozen centers in the United States are now doing research to determine whether and the optimal training that should be applied to people with incomplete spinal cord injuries to restore function."

    Are you aware of a list of these centers. Thank You

  7. #7
    t-bone, here is a list of at least five of the sites:

    http://www.clinicaltrials.gov/ct/gui...006429?order=1

    Others centers that are doing similar but different trials include Kessler in New Jersey, Craig in Denver, Miami Project.

  8. #8
    Originally posted by SHMILY524:

    Hi,

    I just found the website "Projectwalk.org" and I've read through it. It seems like a good program. The only thing that concerns me is that there are no physical therapist or doctors (yet) on staff. They are exercise physiologist.
    I have read so much about the different programs for rehabilitation.
    Being a polio and being rehabed during the stone age, these progressions are amazing.
    But, I feel the same old standards will apply..alot of hard work and dedication to
    any program that is used.
    It seemed to me the best therapy I used and
    many more polios agree...was water based.
    Do these places use water based therapies?
    The water always gave me such a feeling of
    freedom. I hope you do try it's benefits.

    Has anybody on this list done this program? My husband is seriously thinking of going in January for 3 or 4 weeks.

    We aren't expecting a miracle but we think with Bob's injury being low (L1/L2) and his ability to walk with a walker. This program may be a really good push towards getting him walking with a bit more ease.

    Thanks for any feedback.
    Dee

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