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    Back on the road to a cure...

    WARNING: THOSE UNCOMFORTABLE WITH REPORTAGE
    OF MY PERSONAL JOURNEY TO A CURE FOR PARALYSIS,
    PLEASE READ NO FURTHER.


    Greetings, fellow sufferers and those who attend and accompany us,
    I have returned from the land of the Living
    to the land of the Tortured, hunkered low with our thousand-pound logs for bodies...

    No, I did not return gracefully, they had to drag me onto the plane to get me to leave. Still, change happens and it finally became apparent that I must at last move
    from my spot.

    Hitting the ground running, in my first week, I have begun a gaited ambulation program locally, using the Lite-Gait system and two therapists. I'm ugly but three days of therapy have me gradually throwing a hip or two forward with greater proficiency. Kitty, my PT, is astonished, 'Hey, you just might have something going.' Damn tootin'.

    My months in Brasil have borne rich personal fruits... and some progress towards recovery. Indeed, I have to say I am better, stronger, less pain, more vibrant than pre-Brasil, though I am not walking, standing, nor have any of the vaunted 'functions' returned, yet (ah, yes, eternally hopeful, I). Too, before my trip, I was awkwardly though not reliably standing for a few seconds at a time; since then, I have been off the standing frame entirely while in Brasil... and haven't independently stood, though we have yet to really give it a try and we'll see how things flesh out as I get back into a more dynamic program: gait training thrice weekly with lots of stretching (problems with my heels not resting on the braces when I treadmill 'walk,' damn learned inactivity crap, tendons and ligaments shortening; was able to do 12 minutes by day 3, though), getting into a pool as often as possible, standing frame daily, greater general exercise and activity. Going to travel this summer, get out of the heat, Oregon coast, Vegas for spiritual re-affirmation.

    Much better without the damn 17-inch rods in the back. I recommend that be done if the choice ever comes up; you sleep so much easier. Been off any pain meds for two months, no meds at all. No back brace since I arrived in late March, ah and that weird nerve-buzzing, on my forearms primarily, but all through me, has vanished, or diminished.
    Not as anxious, impatient as a few months ago.

    The facilities in Brasil are lacking compared to our first-world conditions, no treadmills, hydraulic lifts or whiz-bang mats, but they more than make up for being a step behind technologically by caring so greatly for the patient. In the entire time and having met several different university, hospital and clinical staffs in Sao Paulo and the south, Parana, Santa Catarina, the same observation could be made: the researchers, therapists and doctors care, they linger and connect with you. I could ask questions, anything I liked and they would take the time to respond. I spent hours, not 35 minutes or whatever, with Daniel, my therapist in Balnariou Camboriu, hours of stretching, pool work, movement, massage, all aimed at restoration, the possibility of; talk, too, of the philosophy of surviving accidents which bring us one step from death itself, talk of the metaphysic of paralysis, and where in our American clinics perfunctory do we talk of the metaphysic? Who here in the States regularly speaks, patron-to-client, about the Reality of paralysis, what it Is to be plegic? No one openly faces and addresses that, what our souls experience, save occasionally at the Wednesday night get-togethers where we 'share' experiences; all efforts instead are focused on body, function, 'caring.' Yet this caring
    is largely pornographic, without essence, a going through of the motions. In Brasil,
    a great deal of attention is addressed to your sense of purpose now as a plegic,
    how the spirit is to survive the numbing crushing smothering quicksand of constant paralysis, the buzzing screaming continuing mad Discomfort which is this Hell,
    'Whacko spasms whenever ya shift position, throw ya outta the chair; ah, damn, another busted heel? This thing'll never heal up... oops, hey, I don't have to piss again, do I? Better grab my... yep, soaking wet. You don't suppose it's another bladder infection?'

    Today is my first day back to the forum; spent the morning trying to get up to speed, reading developments, who says what, etc. I'm impressed and intrigued by developments at Egaz Moniz in Lisbon, and the efforts of the Ambler group. Actually, it appears that quite a few people here are stepping up their efforts, lots of collaborations. Who knows what breakthroughs will happen when people actually try.

    Wise Young reports concisely on what's taking place with the Barros study at U of SP.
    I made many a query, visited first-hand and shall add the upshot of my investigations is that they are WILLING NOW to attempt the bone marrow quest and they have people volunteering and thus they are moving quickly, steadily; the trials are being launched as we speak, and judging from the people I met, we shall be hearing results soon. They are confident; I'll report when I can. In some ways, I wish I was involved, a player getting injected; yet, not only I am excluded (at this phase) by virtue of my procedure with Cheng, I also want to wait and see; if it works to any degree, the door will widen for all of us, for they know people are suffering. A stunningly profound collection of rotting, festering plegics at a certain hospital in Sao Paulo should be enough to serve as reminder of the suffering this condition brings. My god, I have never seen anything like it...

    Fat, a butterball from weeks of barbequed meats of every description, chicken, sausages, shrimp, plates of fresh seafood, beer, tall and cool, 'yes, another one please, porque nao?' Ah, Brasil, what memories I take: a panoply of foods, wines, cigars, music by the beach with the madman, Isaias da Mata, club gigs before a few hundred, a studio session, voice, confidence returning, 'Strange to be performing in a damn wheelchair, though nobody really seems to care, except me...'

    Hours sitting before the water, working, thinking, dreaming, scheming, Being.
    And the girls, the asses abundant, free, proud. Here, if you look at a woman, she'll sue; there, she's offended if you don't.

    More and more intense spasms, and yet I refuse to drug myself for them. Deep burning pain lasting longer and longer, mostly right side. Feels like I oughtta be able to move, something; just on the verge, right there... then no. Increasing sensation in the groin. Hey, got a hard on twice now that actually worked, kinda. Who knows if it wasn't just random luck, but further experiments are certainly warranted and shall be conducted.

    I have not been in touch with Dr. Cheng of late, nor do I plan to return this year soon for a second injection, unless he specifically suggests it. I am thoroughly satisfied with having done my procedure, and believe I made the right choice; at minimum, the Harringtons are gone, I'm decompressed and cleaned up, and there's a window ready for a next-generation therapy. And I may, in time, actually recover something, though I am certain that any ability to control movement is a long-shot. What's taking place in my groin, however, is not. More and steadier sensation, uncomfortable but there. Can really feel the bladder, occasionally now the finger. Yeah, I do hope I'm getting somewhere, but like many of you 'believers' insist, our future is less bleak than it was even five years ago. Combinations are coming, we will be pieced together, more or less, soon, in geologic time, I know, but soon nonetheless. Yeah, I know, just not today...

    And I am saddened to report a great loss: my brother-by-spirit, Rich Baker, died a few weeks ago due to complications from pneumonia. I am still stunned. Tad, his brother, came down and is now staying indefinitely in Brasil. Live well each day, people. No one knows tomorrow.

    I must add this, too: unless there are objections, I will be updating this thread with relevant information as it develops.

    vgrafen
    vgrafen

    My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

    www.booklocker.com/books/2857.html

    A percentage of every sale goes to CareCure.

    #2
    No objections here, but objections or not do what suits you best. Glad to see you back on the forum, although I'm sorry you left Brazil ( WHAT WERE YOU THINKING?)


    LIVE IT UP AND LIVE IT LARGE!!!!
    LIVE IT UP AND LIVE IT LARGE!!!!http://spamhate.com/beerchug.gifhttp://spamhate.com/affection.gifhttp://spamhate.com/bondage.sml.gifhttp://spamhate.com/sperm.sml.gifhttp://www.spamhate.com/wav.gifhttp://spamhate.com/banghead.gif

    Comment


      #3
      X-racer...

      Please, you could explain your post better?
      With more details on your comment.

      Rebechi_Brasil
      Rebechi_Brasil

      Comment


        #4
        Welcome back Vgrafen and please continue to post updates!

        Comment


          #5
          New- ?

          Hi, New here
          Iddo's the name, a 26 years old paraplegic t5-6 froma motorcycle accident in India.
          I want to ask about the injections you got from Dr. Cheng, which you said
          would give a door to future cures. Tell me about it, what is it, must I run and
          have it? If I want any Chance of maybe curing and walking in the future, or
          atleast pissing when I want... that would be great
          Thanks, Iddo

          Comment


            #6
            Welcome back

            Sounds like quite the adventure.

            "Life is about how you
            respond to not only the
            challenges you're dealt but
            the challenges you seek...If
            you have no goals, no
            mountains to climb, your
            soul dies".~Liz Fordred
            "Life is about how you
            respond to not only the
            challenges you're dealt but
            the challenges you seek...If
            you have no goals, no
            mountains to climb, your
            soul dies".~Liz Fordred

            Comment


              #7
              Welcome back.

              Since you've started gait training and seem pleased with the progress have you checked out Project Walk? www.projectwalk.org

              Just a thought.

              Onward and Upward!

              Comment


                #8
                Vgrafen

                Glad to see you posting again. Good luck with the gait training.

                Deb
                "Save the last dance for me!"

                Comment


                  #9
                  update

                  Iddo, please check the thread 'Taiwan,' which details the procedure ad nauseum.

                  Chris, no, I haven't checked out projectwalk, but I am about to, thanks.

                  ~
                  Yeah, sitting here in the 100 degree heat, why the hell did I come back from Brasil? Nobody ever said I was a genius.

                  Therapy all week, tons of spasms and groin sensations. The grapevine reports Cheng is beginning Phase 3 trials now. Hope they get to the bone marrow/OEG experiments sooner rather than later.
                  ~
                  Went to a medium while in Brasil who told me all about Cheng and his mastery, then mentioned that I was due to recover and begin walking within the year, when the region in my back heals, which it still hasn't yet. I've got a huge dead spot of sensation in my mid-back, left side; she stood behind me and touched exactly where I'm dead, and exactly where my pain is. Somehow, the spirit knew all about me and what I had undergone, with no prior knowledge.

                  Who can say? The rational me scoffs, the irrational me clings to hope.
                  Who amongst us are believers in things irrational? We laugh, we smirk at believers and similar simpletons, comfy behind the vener of reason, which is our faith, and wait for the day our scientists, our high priests, liberate us from our prisons. All emphasis is on the empirical, the provable; believers are fools, we say, yet not altogether with complete certainty. 'May be, you never know...'

                  Of course this debate has been waged here before, 'if one prays hard enough, will God cure me?' And 'why did God cure him and not me,' to those who claim their recovery was based on faith. 'What a fickle God,' we think, 'to assist some but not all.'

                  As for me, I can offer little as to what God does or doesn't do when called.
                  I never asked Him for a cure, I only asked that He outline my purpose, make my road clear from the onset of my paralysis. I have enough indications around me to know He listens, but His actions and reasons for why i am in this chair, though some may claim to understand, are at present beyond my understanding.
                  I simply AM paralized, and my faith tells me I am to bear up to this great task with dignity and grace, knowing one day, my trial will be over. Perhaps then I may say, with pride,'I did not moan, and I was strong when it mattered.'

                  vgrafen
                  vgrafen

                  My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                  www.booklocker.com/books/2857.html

                  A percentage of every sale goes to CareCure.

                  Comment


                    #10
                    "...touched exactly where I'm dead, and exactly where my pain is. Somehow, the spirit knew all about me and what I had undergone, with no prior knowledge."

                    My parents recently went to see someone like this when they were on holiday in Europe. I usually laugh at this kind of "nonsense" but the woman looked at a picture of me before my accident and with no info whatsoever told them I had a back problem... somewhere around the 4th vertebrae. (I am indeed a T4). She sees me standing up leaning on something (ie: a cane) but couldn't say when.

                    Believe what you want, this is what she said. My parents were kind of spooked.

                    Glad to see you back Vgrafen.
                    "Oh yeah life goes on
                    Long after the thrill of livin is gone"

                    John Cougar Mellencamp

                    Comment


                      #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

                      Comment


                        #12
                        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
                        vgrafen

                        My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                        www.booklocker.com/books/2857.html

                        A percentage of every sale goes to CareCure.

                        Comment


                          #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.]

                          Comment


                            #14
                            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
                            vgrafen

                            My book, 'Scouring the globe for a cure: a disabled man's experiences with stem cell treatment' is available at Booklocker at the following address:

                            www.booklocker.com/books/2857.html

                            A percentage of every sale goes to CareCure.

                            Comment


                              #15
                              welcome back

                              hey V, glad to see ya back we are all praying for you so please stay strong and keep us posted, gloria [img]/forum/images/smilies/smile.gif[/img]

                              Comment

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