Page 2 of 40 FirstFirst 123456789101112 ... LastLast
Results 11 to 20 of 394

Thread: Back on the road to a cure...

  1. #11

    I like your additude!

    Hey, I'm from the same part of the country as you. Where are you going for the gait training? Is it a regular assisted/harness treadmill type thing?

    Thanks, Jan

  2. #12
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    Location
    chico, ca, usa
    Posts
    2,048
    Jan, I'm at Enloe Rehab in Chico. Yeah, I guess it is a 'regular treadmill harness' thing, though I have nothing to compare it to, having no other experience with other devices.

    On this subject, there's been a sudden change of status: I went to therapy yesterday all pumped up and ready, only to find I have contracted a huge blister on my left foot, complimenting the open heel wound on my right. Therapists freaked, 'goodness, this is serious, off to wound care for you,' where I was told, 'nah, it's not that bad but no standing frame or treadmilling till it gets better, maybe two weeks.' Damn, and my legs are jumpin' like frogs on skillets, I'm itching to get into some serious training. (I guess I got the blister from not wearing shoes, a result of the heel rip, and having my foot sit on the hot floorboard of the car.)

    I can't win: I finally heal up my nagging heel wound after months of ugly, I'm Mr. Serious about wearing shoes, which really help the edema, but I take the shoes off ONE DAY and I rip open the now-healed heel, which quickly disintegrates. Shoeless, I then burn the sole of my feet and set my progress back even further. This endless cycle gets old, but what ya gonna do?

    A positive development did occur: Lynne, PT, found that my sensation levels have dropped considerably. Original t-6 injury, with nothing below that level, has me now at t-10 or so on my right side, and t-12/l-1 on my left, with the bizarre patch of dead just above it. Any type of touching of my skin below t-6, or stretching, yawning, coughing, laughing, breathing deep, and I spasm, boom!
    Legs are all over the place.

    Yeah, who knows what's going on, but I'm going in to UC Davis on Monday for an MRI to see if it might be a cyst cauing problems, my doctor's belief, though I think it's just whacko nerve re-routing.

    vgrafen

  3. #13

    Awesome!! T6 to T10, T12.

    Now, that's progress. Sorry to hear about your foot. Sonora, where I live, is still in the middle ages - no assisted treadmill things here. So I'll need to drive to the Bay Area if I want to give it a shot. My youngest has just graduated kindergarten and will start first grade the end of August, leaving me a good part of the day to myself. Would be a lot of driving, but I'm thinking it would be worth the 2+ hours each way if I can find a place that offers the therapy. I tried to do a search on the internet without much luck; there was/is a study going on at Stanford, but I'd rather find something closer. How did you find out about the rehab center in Chico?

    Vgrafen, how long after your surgery did you start noticing changes in your sensation level? Was it only recently?

    Thanks, Jan

    [This message was edited by Jan on Jun 26, 2002 at 04:49 PM.]

  4. #14
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    Location
    chico, ca, usa
    Posts
    2,048

    updates

    Chris, I checked out projectwalk's site and sent a request for info. Looks interesting. Anyone here with first-hand experience with what they're doing?

    Jan, I was sent to Enloe after being discharged from Washoe General in Reno, NV, one week post, where I stayed for 7 weeks. they just got the LiteGait system this winter for stroke/incompletes, and I had to push hard to get access to the treadmill. The pt's are still uncertain if a complete should be up there walking, but Kitty is damn pro-active and increasingly enthusiastic/encouraging, and I'm a gamer and determined. I'm a little pissed that my progress is now suspended until I'm healed, but this is life as a plegic, in and out of wound care like I own the place. I'm sure a call to LiteGait could produce a list of locations in Cal. who have their systems. You can rent a harness from them, too.

    As for when I noticed a lowering of sensation, that's a tough one. I'd say I actually detected it really early, couple weeks post-surgery, but nothing became concrete until Brasil in March/April, when it occurred to me my sensation levels were dropping. Lately my totally dead left thigh is beginning to buzz more. I love it, I AM getting more but it ain't a continuous, linear progression, and it's damn slow. Still, it is better than before surgery and it may lead to something tangible.

    And for what it's worth, Brasil 2-0 against Germany.

    vgrafen

  5. #15
    Senior Member glomae's Avatar
    Join Date
    Jul 2001
    Location
    flatonia,tx
    Posts
    330

    welcome back

    hey V, glad to see ya back we are all praying for you so please stay strong and keep us posted, gloria

  6. #16
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    Location
    chico, ca, usa
    Posts
    2,048

    updates

    Reply to emails
    (Gloria and RT):
    Yes, I am VERY interested in what is happening with mkowlaski, but as he states, there really is no way to determine if the recovery he is experiencing is simply recovery due to time, or Cheng's procedure. My view is that he/we are better off having had the procedure. In my situation, I can feel when my bladder is full, although after a morning of coffee and repeated IC's, I retain the full feeling even when empty. Last night, I felt 'the finger within' while doing bowel care. It comes and goes. But I am spasming like mad lately, in all sorts of situations. I rub my right leg, barely even touch it and bango! off I go.
    (Greg G): No, I have not had an ejaculation since my injury, but I am not worried that I'll suddenly have dysreflexia should I be so fortunate. God, I'd love the challenge! Seriously, I have been told by incompletes that the first few times 'it' happens can really set you for a loop, but believe me, if it comes, I'm game... yeah, too many puns, sorry.
    (Martin K)
    I am considering any therapy/procedure that shows promise, dude, what do you think? But no, I am not 'sold only on Cheng,' I am a realist and sick of this chair. Yes, Lisbon sounds promising, so do the trials happening now in Sao Paulo; I've got feelers out but, like mkowalski, my next act won't be for at least a year. Gotta let this procedure run its course, and there's plenty of stuff happening in the next few months which may alter all of our plans. Patience, and a fat warchest, is the only virtue here.
    (BB)
    I can't explain why I was standing in March easier and with more consistency than now. My trip to Brasil changed my routine, and perhaps I've retarded my progress because of it. For a few days there, yes, you're right, I was really excited and perhaps over-emphasizing/hopeful of what was taking place, reading too much into it, etc. And yes, you are also right that I am a bit down lately; probably the emotional gulf from my return to Cal, and the damn heat. What comes up must come down.
    ~
    Crazy things happening lately; summer doldrums, dreams of Brasil, desperation for a cure RIGHT NOW mixed with 'who gives a shit anyway, I'll be in this chair forever.' My customary enthusiasm is a bit low, but these are the ebbs and flows of paralysis: some days are tolerable, other days suck.

    Today I return to rehab and attempt to get back up in the treadmill, if my pts let me. Blister deflated naturally, other heel better; ugly edema, though.

    Sensation below the injury is increasing, relatively steadily but again, nothing functional. It's maddening, the incremental improvement and yet knowing it isn't enough to get going.

    Am I, too, getting bladder/bowel back? I honestly can't say, but the sensations in that region are only increasing, so something is happening, just not enough.

    Taping a radio spot this week for PSA/public radio, on stem cells, OEGs, other potentials. Got a couple stations who'll post the info. I'm doing it primarily to ramp up the awareness, and to clarify some confusion; there is incredible misconception amongst AB's over stem cell 'cures,' and somebody has to get the word out that, yes, we need to keep the door open, but not put all our eggs in the stem cell basket. Anybody want to get involved, make a copy, get it on the air or whatever, get in touch.

    And good news on my foundation front: we just sent our first container load of used equipment and chairs, etc. to South America on Monday. We made the decision to go ahead and make a trial run to Brasil out of our own pocket to see what problems we'd encounter and to have some track record for the next step. The paperwork trail to set up a non-profit is ridiculous, so I decided to circumvent the process and take matters into my own hands. 19 chairs, assorted walkers and braces and a ton of unused equipment won't make much of a dent, but it's a start and it'll at least touch a life or two.

    Last point: aside from taping over your mouth, how do you lose weight sitting in these chairs? God I'm fat, a puffy blimp of excess.

    Alright, I've bitched enough, productivity time!

    vgrafen

  7. #17
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    Location
    chico, ca, usa
    Posts
    2,048

    thoughts on projectwalk

    Having reviewed the projectwalk.org site now several times, and contacting a couple active clients, I am both impressed by the group's philosophy and attitude, and disheartened. Makes a lot of sense, the intense focus on exercise and training one's spasms to perform, but their requirement of only assisting INCOMPLETES rules a lot of us out, the cost is a hindrance, but the greater problem is location: not many of us, myself included, can pop down to San Diego every week and employ this facility. Too, the statement, incorrectly quoted here, that 'your whole life will become devoted to training, training, training' at the expense of everything else seems a little out of balance.

    Look, I was a professional athlete for a number of years, and I trained more than most of my compadres, working my ass off is a part of me, and for some, there's nothing like total focus on training, but I can't conceive of any plegic, after the initial period of enthusiastic committment inevitably dies back, being able to continue the hard-core training indefinitely.

    Maybe I'm mis-reading the text, but the interviews with those I spoke with gave me real, though perhaps partial, insight of what's happening: everybody digs in with a lot of hope, sees some early improvement and stays with it, then gradually gets tired on the non-stop intensity, and cost. (I asked to quote sources but they wanted anonymity.) Anyway, I like the concept, but the execution, as it relates to my situation, isn't applicable.
    ~
    As for my gait-training at Enloe, the pts are so damn cautionary, mediocre and unmotivated -save Kitty, who is now on maternity leave (great!)- that I have to push them excessively to produce. The whole damn staff looks for every reason not to get me up in the harness. Yesterday I had to insist on getting strapped in; after they looked at my heel and said, 'hmmm, not good,' I countered and insisted we try. When I said, 'hey, this place is the only facility I know of on the west coast getting a complete plegic into a LiteGait system and walking,' the response was, 'gee, aren't we lucky,' and the clincher, 'I don't know if that's good or we're just wasting time.' Wasting time, huh? You just pissed me off, and I am now going from polite, compliant, patient patient to pushy, self-centered demander. F them if they don't want to do everything they can to help me.

    Yeah, I'm beating a dead horse but here we go again: the majority of US pts and doctors can kiss my ass for their complacent attitude. I have been to Enloe, UC Davis, Reed-Irvine, Santa Clara, Washoe in Reno; I have written or spoke with rehab doctors and researchers ALL OVER the US, and with the exception of nutcases like Wise Young, the belief is always the same: 'sure, maybe one day we'll cure paralysis but we don't appreciate you mere patients bringing untested research (and concepts threatening to the status-quo) into the mix; now be patient, keep quiet, we know better than you what's good for you, oh and here's some Viagra.'
    ~
    Pumped up over mkowalski's tantalyzing translated article posted yesterday. Looks good, them OEGs, eh? Good stuff is coming down the pipeline.

    vgrafen

  8. #18
    I think the good thing about Project Walk is that it gets us focused on the importance of continuing physical therapy - even though it is my understanding their "therapists" are not licensed PTs.

    I walked in braces for years and now suddenly I find that for some reason I'm not able to find my center of balance while leaning back on my hips. Somehow, as the years went by so did the flexibility in my hips .... and I never even knew it. If nothing else comes of my surgery with Dr. Kao, at least the focus on therapy afterwards has alerted me to dangers of sitting idle.

    I printed out some info on Project Walk and showed it to my husband. He is a physical therapist with 20 years experience working in rehab. His response: how is this different than what we do in rehab - try to work with whatever tone(spasticity) or sensation the patient has, work them several hours a day, try to get them standing or walking.
    If insurance companies weren't in such a hurry to get us out of the hospital after our injury and then so reluctant to approve ongoing therapy, we wouldn't feel compelled to pay $1,200 per month for physical therapy out of our own pockets. I would love to be able to work out at Project Walk, but like most people, just don't have the time or money - besides the fact they're not taking completes.

    V, as far as keeping the weight off, for me, swimming is the best. I lap swim 3 or 4 days a week with a local swim team. The minute I skip a week or two, the weight creeps back on. I used to do a lot of wheelchair roadracing (also great for keeping the weight in check), but it's real hard on the wrists and shoulders. After all these years, my joints have had it. Swimming is the only way to go.

  9. #19
    Senior Member chastev8's Avatar
    Join Date
    Mar 2002
    Location
    valdosta ga usa
    Posts
    1,175

    Correct Jan

    I think you are absolutly correct Jan: swimming is the best exercise for many reasons-low impact, cardio, strenth, sheer movment, etc, etc. Everyone should get in the water if they can. Psychological it great to see things working that I didnt know worked on dry land.

    Project Walk is up to $2000/month. I was planning a week visit but that will be $750 for the week. Im not sure if I dont just want to buy an exercise bike they use there instead, (about $600) then see about getting a suspended weight frame constructed.

  10. #20
    I, too, think swimming is fantastic.

    I know this is a bit off topic, but what thread doesn't drift now and then?

    I have problems swimming in that I separated my shoulder, and the constant range of motion while swimming ends up making my shoulder hurt. Do any of you avid swimmers have any suggestions as to techniques that might aleviate this pain?

    "I saw the best minds of my generation destroyed by madness, starving hysterical naked..."
    - Allen Ginsburg

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •