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  1. #11
    Junior Member deedee's Avatar
    Join Date
    Jul 2002
    Ridgecrest, CA, USA

    Thanks for the projectwalk site. I didn't even know it existed. It's great that we all can get together here and share what information we have.

    Have a super day.

    Davidh - thank you for bringing the topic up. The responses from everyone is encouraging.

  2. #12
    Interesting. I began feeling tingling in my legs, feet and toes about three weeks ago. I is caused by movements in my upperbody torso and arms. If I rub my toes on my right fot they will tingle like crazy. Although I have no touch or heat/cold sensation. Hopefully this is a good sign

  3. #13
    I get this too. If I try to move a muscle, it's as if that muscle tingles. I also notice that if I try real hard to move something I can't, it will tingle, then if I keep trying it gets weaker as if fatiqued.

    Also sometimes at night if I've been in the chair all day, my butt feels tingly like it's gone to sleep. Normally I feel nothing.

    Learn from the mistakes of others, you won't live long enough to make all of them yourself.

  4. #14
    Senior Member lynnifer's Avatar
    Join Date
    Aug 2002
    Windsor ON Canada
    I, as well. And this is after 18 years of being paralyzed (at 12 - I'm now 30).

    I had the chance to speak with a research physician at the end of last year who said that he'd be very interested in how 4-ap reacts on me, yet I couldn't get into the study. I can tell when I have to use the washroom - I feel I just need that extra "push" that 4-ap might afford me.

    I am so looking forward to trying it!!! I understand Phase III trials are still underway. When will it be released!?!

    T-12 para due to Transverse Myelitis July 85

  5. #15
    same here too.

    Originally posted by Phebus/Chris:

    Same thing here. That's why I'm trying PW

    I don't understand why more of the group isn't that excited to at least check them out and try as I am?
    definitely hear ya Chris... i'm in the same boat... kinda (NI)

  6. #16
    Dr. Young,
    My husband's spinal cord injury qualifies as "very severe". I'll try to explain this, as he told me, but it's hard for him to explain to me, and difficult to understand... He has always had the burning pain. He also has the electrical shock feelings. Whenever he moves his head, or even if I touch his head, it increases the burning and electrical sensations(No, it's not a good thing). If he hits his chin,it sends an electrical jolt all the way down to his feet. Many times it is extremely severe. He describes the burning at times as being in a frying pan, or cooking in a microwave oven, with his skin stripped off. In May, after sleeping on the inclined bed (7 1/2 inches) after a few days, he said the pain became different, a "freeze burn". (yes he is trying the inclined bed,along with many other things, anything and everything that may help.)He has been completely off of Baclofen a year now, and off of Neurontin, for over 4 months. He believes the Neurontin and Baclofen are ineffective and counterproductive. His goal is to walk again, if it is at all possible. Sometimes, the burning is not as severe, more like waves of pulsing heat??? Though he is not "hot". He may even be covered up with a blanket. The burning is always there. Different things make it different, strange. Whenever he tries to move his toe,or leg, etc. the burning tingling in the toe, or leg increases. If you rub his legs, he feels it as a burn, that moves with your hand, though he has no "normal" sensation, pinprick or heat and cold. He is diagnosed C7 Asia A complete. I don't know how "correct" that is. One doctor described his injury as having only a few strands of cord tissue between C7 and T1. I don't know the percentage, but I like to believe he has at least 10 percent. Looking at the MRI, the cord is definitely very atrophied there. But he has alot going on just the same. In the pool, he definitly has quads, gluts, obliques, abdominals, and hamstrings working slightly.

  7. #17
    Originally posted by Phebus/Chris:

    Maybe I'm in la,la land?

    Onward and Upward!
    Nahhh. Just too focused on one group. Of course the same can be said of me as well I guess. Check out the thread I started on the exercise forum title Nuero Institute. In that thread I describean experience where 20 years post injury I have gotten slight movement in my legs. I haven't updated that thread but I need to.

    For 20 years I had the sensations described here. For twenty years I was told this is normal. I'm only finding out now that while it is common it is not normal. So here's what's been happening lately. I've been getting on the bike regularly along with stimming in the standing frame everyother day (great for the calves). I am getting sensations on my legs and thighs like someone is brushing them with a feather. when I'm on the FES bike I can now make the level of stim go down while increasing the amount of RPM's. And when I do this my left calf, butt, and both feet will start to burn like crazy.

    There is little doubt in my mind that there are a lot of undiagnosed incomplete injuries out there and the amount of recovery they could gain back is significant. And whether you go to NI, PW, or SCI Step, a program of this type is necessary to put your body under duress safely and make it respond.

    I like NI because of its size (it contains every piece of equipment used by the other programs pllus more), it uses FES (PW doesn't), and it takes insurances to help defray costs (I don't believe the others do, possibly SCI-Step, but I'm not sure). Others prefer PW. Still others are ecstatic about SCI-Step. Regardless of which one you choose . . . do something because you owe it to yourself.

    Chris, open invitation . . . come on down to Phoenix with your wife and stay at my house for a couple of days. Southwest is cheap from Denver to P-Town. My wife and I will throw some steaks and shrimp on the BBQ for everybody, we'll wash them down with some Coronas (or other beverage of your choice), and smoke some quality stogies under the misters. In return? You go to NI and work out with me for a day, check out their facility, meet the c5-6 quads who want to see how your hand surgery has gone, and meet the staff. If you still think PW is THE place after that . . . I'll buy you dinner and a margarita at the Top of the Rock (great view over looking the city). Plus you can give me some investment tips.

    Now haw can you do better than that?

    MAX OUT!!!

  8. #18
    I get another thing besides the tingly sensation when I try to move something. I can feel my muscles tighten when I have spasms, and I can feel a spasm coming on by the tightness I feel in the muscles just before it goes off.

    Learn from the mistakes of others, you won't live long enough to make all of them yourself.

  9. #19
    Senior Member Stiggy's Avatar
    Join Date
    Jul 2002
    I gat the same results when I try to move my leggs but theres something else I would like to add to this subject..Lets go the other way and try to relax your muscles in your leggs,what Happens!When I try to relax my legg muscles they start to spasm and the more I think about being relaxed the spasms get worse.Now when I mean spasm its seems to be a different kind of spasms,a feel good spasm.Anyone else ever notice this sensation. Happy Trails Stiggy

    "The Meaning of things lies not in things themselves,but in our attitude towards them"

  10. #20
    larwatson, Scott - If you noticed this thread was started inJuly 2002 about 3mos before I attended PW and before NI really came on line. This thread was started / written prior to my initial experience therefore my post "la la land" was essentially moot in today's discussion. Make sense?

    To be clear there have been comments made in the past that've eluded to my supposed favoritism of a particular program, i.e. PW.

    Personally, and professionally (whatever works to get us better is all I really care about) I do NOT favor any of these programs over another. In my mind I am excited that a few of these places exist nationally although we are in desperate need of many more - every city. This upsets me - that there are not more that each and everyone of us can attend.

    Sittallstandtall, NI, SCI-Step, Center IMT, PW, CRPF Centers of Excellence are all GREAT programs. The difference to me, because of experience / inquiries is in the staffing and one on one attention all day every day at PW vs limited at the other facilities. Btw, Center IMT wanted to charge me $140 per session - 1.5hrs. Is that reasonable or exorbitant? Depends on who's paying.

    My understanding is that the other facilities offer one on one but generally once your familiar with the equipment you're on your own to use it. Right? Wrong?

    Which is better? I don't know. However, that is a big difference, and the reason imo, for the large price disparity.

    larwatson, let me also touch on FES (bike). I agree with you and everyone else about the benefits of e-stim pedaling - no doubt. However, I have seen muscle building also done without it on various other machines - leg press, total gym, etc. with assistance.

    Is it absolutely necessary? I don't think so. Is it preferred if available? To me, absolutely. But I don't think that just because one facility has FES and another doesn't means that one should be favored over another.

    Again, I've seen similar results that were achieved exclusive of FES. Muscle stimulation, no matter how achieved, is still muscle stimulation isn't it?

    Now, as far as steaks, stogies and Coronas go - you're talking my language and I sincerely appreciate the offer. I'll check with the boss and see if we're up for a Skyharbor landing (I used to have sales territory in Phx during my days with D&B) so I'm pretty familiar with your neck of the woods - although its been a while.

    Finally larwatson, let me say that you are an inspiration to many, including yours truly, to be going for it after 20 some odd years. You're a better man than I. Now, as far as your choice of profession....well that's another story
    (I've got 3 attorneys in my family lol )

    Btw, I think PW does have an FES bike but they prefer not to use it.

    [This message was edited by Phebus/Chris on 06-24-03 at 09:14 PM.]

    [This message was edited by Phebus/Chris on 06-24-03 at 09:18 PM.]

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