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

  1. #101
    Join Date
    Apr 2002
    lovelock, nevada
    VGraften, I just read your posting and I already made some copies and gave them away. I am so sorry, I didn't realize they were not' ready yet. I even gave one to Dr. Caldwell; should I ask it back? Caroline was going to make a whole lot of them and give them out. I guess I should stop her, or is it all right? I' am sorry I didn't know you were not ready to have them avalable. What should I do?

    somebody get us out of these chairs!

  2. #102

    UH V? I may be hell I'm not.....

    "I did another 20 minutes on the treadmill yesterday, exhausting myself but the glow well worth it. Spasms really changing lately, deeper, different; hard to describe, but things keep changing."

    V, what you are describing here is fitness, at the bare boned developmental level that you never had to accomplish before.......way to go baby!!!

    Keep going,

    Nurse Mary

  3. #103
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    chico, ca, usa

    2 part update

    Been very busy this week with a number of projects, not all good. Repeated my personal record 20 minutes on the treadmill twice this week, then Friday got on the parallel bars and stood a few times; as I'm laying on my stomach ofr fifteen minutes a day, I'm beginning to reverse the atrophy/tightening in my mid-region, menaing I can stand straighter on the parallel bars, though still not correctly.

    I want to also publically apologize to my pt, Lynne, at Enloe Rehab. In an earlier post from June, I had bitched that she was 'negative' and 'didn't really want to be doing this' (getting me up in the harness/treadmill). I am now eating my words, for I have found she is not negative at all, just a cautious professional who has a checklist of things she has to go through before she's convinced we should proceed. What I mistook for negativity I see now as VERY WELL-PLACED CONCERN FOR HER PATIENTS. She cares, and my mind was made up prior that 'all pts care about is maintaining the status-quo.' I was wrong in her case, and I apologize.
    I have recieved ten emails this week asking me to relate my recovery experiences since going to Taiwan. Somewhere on the net, and I don't yet know where, there is a story circulating about Bruno, mkowalski and myself going to Taiwan and how our treatments have given us varying forms of recovery. (If somebody here has seen the story, please post it or drop a link to it.) You all have read my recovery process here, and I will add all relevant details as they appear, but I will now ask, if they are comfortable, that Bruno and mkowalski to relate their recovery experiences here: how have you progressed/healed from surgery; how has your body responded to Cheng's treatment directly in terms of sensation/motor recovery, if any; how have you responded spiritually/psychologically since the procedure; and any other thoughts relevant to your experience in Taiwan. As is my habit, I am posting these questions/responses here for the good of the forum. Reply as you wish.

    What I should add in my case is that I am getting more contracture spasms, deeper and with more feeling; I seem to have more muscular awareness, and even some hip flexion/control when I treadmill. I stand in my standing frame with greater ease, and can weight-bear more. Groin is still increasing in sensation, got a stomach muscle now reporting, left leg increasing in awareness, and right leg 'coming on' more and more. Nothing translates to control yet, but I seem to be continuing and improving, slightly more each week. Back pain reducing, my raneg of activity getting better, I transfer better, can feel my bladder when full though I still have false full sensations, odd late-afternoon contractions which make me think full when it's empty, and spastic activity/contractures triggered by a host of things. In my mind, this is all good, and the journey continues.


  4. #104
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    chico, ca, usa

    And the not-so-good news:

    In my casual way of operating, several months ago I invited another plegic (forum member who doesn't want to be identified, UNFORTUNATELY, YOU COWARD!)
    if she/he ever found her/himself out in Northern Cal, to 'drop by and chat.'

    'Sure, we have plenty of room, stay as long as you like,' I cheerfully stated. Ooops. Usually when you suggest such an invitation, and always in my case, I certainly mean the welcome but it is open-ended and general. My door IS open, and people ARE free to come by, I just wasn't prepared for the... ensemble which arrived last Saturday morning at 9, calling from the pay phone couple miles down the highway, 'hey, v, it's me, you said if I ever get in the area to come by, well, here I am, and I've brought some people to meet you...'

    Wow. 'OK, come on by,' I replied, alerting my wife and getting my ass up from bed. 20 minutes later, THEY had arrived. They'd been on vacation to Disneyland and thought they might stay a day or two with The Kid. Now, 8 days later, I have just said 'good riddance' to the clan of 6 this morning, after much controversy. My over-taxed wife did her best, my kids patient and helpful, and the visitors were aware of the impact on our home and did what they could to stay out of the way, realizing after a day we didn't have space and going to a nearby hotel, but still...

    Our days unfolded as such: he/she would arrive at my place in the morning, my wife and kids would take the brood on a hike while we would exercise, drink joe and talk, then we'd take off for rehab or errands while the rest went sightseeing. We'd get home late aft, I'd go hide and do some business, then we'd eat dinner and burn cigars on the porch, grab a hot tub and they'd take off for the hotel. Sounds good, huh? I learned a hell of a lot of Care techniques I wasn't aware of, and he/she saw the extent of my research quests, and got a sense of what I do each day, complete with crazy e-mailers and such. I was told he/she was leaving Tuesday, but by Friday, they were still here. No problem, though the sheer bodies and their quite natural demands were taking their toll on my wife.

    Friday night I had scheduled to enter the studio to try a run at my latest script. I invited her/he and the partner, saying 'let's leave the rest of them behind.' This didn't sit well, 'everybody wants to watch you in the studio and to offer suggestions.'

    'Uh, suggestions, huh? I'm sorry, but I need my space to concentrate and be productive; no place for kids.'

    My visitor was clearly offended. We were getting into the car, my visitor grumbling to the kids, 'he doesn't want you.' Thanks. Once settled, my visitor turned to me. 'You know, v, I've been meaning to say this, but you're very abrupt with people. I always saw you as a total gentleman, but I saw how you are at rehab, you're almost directing everybody.'

    'No, not almost, I AM directing them. I've learned that, at rehab, if you wait others, the entire session often goes nowhere or we run out of time, and I know what I want and am trying to get the most out of my sessions. I don't think I'm short with people, just direct.'

    'I guess, but you need to be nicer.'

    Nicer. OK. Now, I had noticed how my visitor carried always a small bag of pills and was always dipping in throughout the day: pills for pain, for bladder, for spasticity, for this for that. Every afternoon, my visitor would be so loaded our conversations would go nowhere; she/he was incoherent! Anyway, we're on our way to the studio, I'm getting tired of re-explaining my every move to this person (he/she has a habit of putting me on the defensive, and in my own home!) and I'm focused on my script.

    'What are you going to talk about?' my visitor's partner asked.

    'Well, I'm going to address how, after trauma like sci, we often waste a lot of energy trying to figure out the 'why-angle' of why we got injured, when we should put our energy into dealing with it and/

    My visitor woke up. 'Dealing with it? I read on one of your threads how you are still in denial and haven't accepted your injury, so how can you tell others to deal with theirs?'

    'I meant, getting on with trying to be productive and making life as good as it can be while/

    'V, you're such an -f-ing hypocrite!' Slam. I am accustomed to people popping off their thoughts without censure, my wife an expert in the field, so I turned calmly to my guest and tightened my Teflon jacket. 'Yeah, I probably am, but what, in this, case do you mean?'

    I do hope the forum member I am referring to will kindly come on and do a better job of telling you what her/his charges against me are, but I will do my best anyway, until corrected. My guest essentially said, 'You tell everybody to be positive and confident and I see you all day researching and sending out information to people, being vgrafen and all, but I just really think you're running all the time and trying not to accept what has happened to you.'

    I bit my lip. 'Well, I probably AM running from this injury, I DON'T accept it and I DON'T like it and I'm/

    'You need counseling, v, so you don't attack people, people will like you better and that way you'll get more of what you want.'

    'COUNSELING will make me mellow and compliant, COUNSELING will make me accept my injury, COUNSELING is the cure for my disgust over my condition?'

    'Yes, counseling will help, look what it's done for me, I'm not angry and defiant and constantly running around searching for solutions, I'm patiently waiting until the cure is available.'

    I probably would have just ended it there and let the statement stand, gone into the studio and done my thing if not for the next comment. I mean, sure, for a lot of folks, counseling IS viable; it just ain't for me, and THAT'S THE WAY IT IS. And I can accept that a lot of people are waiting until their doctor prescribes the formula for the cure; not everybody has to run to Taiwan or wherever. No, everything would have been cool, if my visitor wouldn't have added this little nip.

    'I think what's happening is you get so stoned that you lose your mind and don't see the truth.'

    The amount of landmines in that statement is incredible: stoned, lose your mind, truth.
    Admittedly I have a habit of hitting the pipe a couple times/day; evenings and sometimes... well, accordingly, right? But it's my only 'drug,' and I damn sure don't go bonkers and lose my cookies; if anything, I become more intent and focused, though of course you lose energy after the 'high' plateaus.

    Anyway, I'd been putting up with his/her barbs and jabs all week. The camel now experienced a burst fracture. 'You know what? I been watching you since you got here, loaded on 'this and that' prescribed drug; hell, I can't even say anything to you after lunch, you're all blotted out and slurred, and you're telling ME I'm too loaded? You're the one asleep all day.'

    'I'm just doing what my doctor tells me to.'

    'You're doctor should be shot for keeping you doped up like a zombie. You oughta toss those drugs. You're missing out on a helluva lot.'

    My visitor then said a few things I am sure he/she didn't mean (clarify if you'd like) before shouting, 'take me home, now.'

    'But I'm going to the studio.'

    'Take me home, NOW!' So we returned and I missed my studio appointment.

    My wife had several friends over, plus my kids and my visitor's and everybody was dancing, playing and having fun when we returned; not 5 minutes home, the place erupted in shouts and accusations, my wife on the defensive with my visitor's partner, and over -f-ing NOTHING!!! Quickly they loaded their van and were gone; not another word until this morning when they came up the driveway, handed me a piece of paper, said thanks and then left, a very long drive ahead of them.

    I will offer here one line from the note: 'you're not who I thought you were.' Geez, that makes 2 of us, friend. I'm not gonna play victim, I'm sure I have my faults, but zounds, you come to my house unannounced, hang out all week, take take take and then I'M THE BAD GUY?

    Is my door still open? Yes. Am I in denial? Probably. Will I go to counseling and/or drop the herb? No. Will I continue to push hard to get out of this chair, including directing therapists and informing physicians and generally demanding (gently) I be treated? Damn tootin'! Will I apologize to my visitor? Are you -f-ing KIDDING me?


  5. #105
    Senior Member mk99's Avatar
    Join Date
    Jul 2001
    toronto, canada
    that's quite the story Vgrafen...

    anyhow you asked for a quick update on my situation so here it is:

    It's now been about 10 months since my surgery. I have had a couple of "patches" of sensation return below my injury level. Lower abs, 1 knee, more so on the back of the legs and my feet always had SOME. It's not normal sensation but I am aware of touch.

    When I do muscle stim now I can tell when the current goes higher because the buzzing in my legs increases in intensity as the current is turned up. I couldn't do this before.

    Most functional benefit so far: Very clear warning of impending diarrhea. This has now saved me 5 times in the last 10 months. I have YET to have an involuntary bm since my surgery. If my bladder fills up fast & the pressure is high I get a very strong urge to urinate as well. This has also prevented bladder accidents... although this is not 100% accurate all the time. It also isn't strong enough to wake me up if my bladder goes mental in the middle of the night. Then I may piss myself real good.

    How I'm doing psychologically is a much tougher answer. It's a hell of a roller coaster for me... at times I find myself actually happy & content, more often I am very disgusted & irritated with the "go slow" mantra. Most of the time I am just OK. Not great, not bad, just OK & doing what I think will help get me out of this chair sooner rather than later. A lot of exercise helps kill time & clear the mind. I am struggling to find some balance between living for today and preparing for tomorrow. I am having a hard time finding this balance... sometimes it seems that getting out of this chair is all I think about, dream about, read about & BREATHE about. It's not healthy and is eating me up... then again I do believe that healthy, happy & well adjusted people will spend more time in their chairs than agressive & obsessive guinea pigs like me. Power to you if you can tolerate the situation better than me. You're definitely stronger than me, that's for sure.

    Spirituality is a non-issue for me. I don't believe in God & never really did. I have an underlying basic philosophy of leaving the world in better shape than when I got here & feel good that I am doing something towards that goal.

    I wish Cheng would be ready to do OEG/ASC/ESC or some other 2nd generation procedure. I'd be on the next flight. I feel a lot more comfortable having surgery in Taiwan than Mainland China or Russia but at this time Cheng is not doing those things. Last I heard there was some government/regulatory bullshit... so I wait and prepare for other options while going through the motions of day to day living. Sometimes day-to-day feels real & good and sometimes it feels like a big act. Smile bigger than I feel & exaggerate my happiness... better than being a miserable prick.

    I also in no way accept this injury as a lifetime sentence. Is this denial? I am very aware that I am badly injured and my body ain't going to heal itself. I am 100% convinced that I will be out of this chair in the next few years and be able to feel my penis again in some capacity. It won't be spontaneous recovery or a Divine Intervention. It'll be medicine & science and a LOT OF HARD WORK on my part. In my mind the writing is on the wall. There AIN'T gonna be a fully tested, proven & paid for procedure available in North America for many more years. Save your money & keep your passport valid.

    that's it for me.

  6. #106
    V, I haven't been reading the forum lately, been dealing with cancer in my family. Big, big difference between SCI and terminal cancer. SCI is something that just doesn't go away. Instead of coming to terms with death, we have to come to terms with a completely different (and sometimes horrific) life here on earth.

    If I remember correctly, you are only about two years post injury. When I think back to when I was newly injured, for the first 2 or 3 years I was a complete basket case. I constantly dreamt of death and suicide (it was my favorite fantasy.) I always put up a cheerful front in front of others - everyone said I had such a great attitude. It's only in heinsite I realize how screwed up I really was. Whether you know it or not, you still are adjusting to this whole nightmare... it takes years. Some people say five years. For some it's less. For others, they stay bitter for the rest of their lives. From what I know of you, I don't believe for a minute you could stay bitter - there is too much fight in your blood.

    Now, you know I'm not saying you should accept this disability as your fate forever. You're obviously not going to do that. Nor am I. But maybe you could use some counseling (not that I'm taking sides with the guy who left you the note - he needs a lot more that counseling.) I've got no doubt you will survive either way, but we could all use a shoulder to cry on (or maybe a pillow to beat the shit out of) every once in a while.

    I'm surprised you and your wife could put up with those "visitors" for so long. I would have lost it much sooner.

    [This message was edited by Jan on Aug 26, 2002 at 01:43 AM.]

  7. #107
    Senior Member vgrafen's Avatar
    Join Date
    Sep 2001
    chico, ca, usa

    Mixed emotions

    Watching on tv a group of dedicated plegics descend on the state capital today and demand loudly and visibly for access rights, I had a bundle of responses to the whole scene:

    I'm all for access, way behind ya and I love those curbs, but the lingering public image of a whiny plegic hell-bent on THE AGENDA doesn't sit all that well. I understand the need to get all fired up about a cause, and access for the disabled is a good one, but a better one, and wouldn't you love to see once or so a week on the nightly news, loud and vociferous groups of disgusting plegics DEMANDING CURE RESEARCH AND CLINICAL TRIALS TODAY, NOW!!!

    Man, I'd much rather see energy going to shit-disturbing the public calm with groups of 'victims' demanding medical justice than more images of self-serving, CARE-related, keep-the-plegics-where-they're-at, well-intended but deluded people pushing ADA rights for personal gain. The many lawsuits and threats of lawsuits, the leeches and bottom-feeders profiting upon this crippling condition, and that revolting suit aimed at decent Clint Eastwood, all this creates a de-facto image of the plegic/disabled solely bent on grabbing what she can, while making everybody painfully aware of her misery.

    Let's hi-jack a few of those plowhorses and get 'em active on the Cure front, we need to harness that fuel and make it serve our ends, instead of endlessly spinning away at, in my opinion and I'm sorry if I offend and this is essentially why I never appear at the 'counter-Cure' sites across the Net... where was I? Oh, yes, side projects and ancillary issues while the real prize, the Big Kahuna of spinal cord injury research, the Cure, evades and goes begging. Damn, if we could get even a third of the people so devoted to maintenance and access and sexuality and what not to get on board the wagon...

    I apologize for the overt evangelicism, but after watching those near-fanatic activists putting their energy other than where I think they should, I just had mixed emotions.
    mkowlaski, thanks for the informative post. Sounds like you ARE recovering, damn slowly admittedly but something IS returning. It'll be interesting to see where you are in 6 months; you never know, the rate of nerve growth mimics an advancing glacier, so there's reason to hope that there might be more. Hang in buddy and get some gait training!
    By the way, thanks Jan, but NO COUNSELING!

    THIS... is my counseling.

    [This message was edited by vgrafen on Aug 28, 2002 at 12:04 PM.]

  8. #108
    Senior Member Leo's Avatar
    Join Date
    Jul 2001
    Yankton, South Dakota
    Amen to those thoughts V

    I keep handing cards to paralyzed people and explaining some stuff and they have no idea. Also when I go to committee meeting I serve on dealing with coming up with plans or technology to get me and others back in the workforce, and we're talking big bucks. I can't keep my mind from thinking, hey just some for CURES PLEASE. I comment to some of them during the breaks but man it's frustrating. One thing we can do and I have to some extent but need to do more is demand of any National or local disability groups we belong to, that they put into their (our) priorities CURE research funding. They should have it on their (our) websites and agendas. If someone can show me one group that does now I'll give them a nickel.

    Keep plugging away, Leo

  9. #109

    I couldn't agree with you more. So many plegics have been brainwashed about no chance of a cure that they have given up. It's really sad what the system has done to these people. It is going to continue to fall on our capable shoulders to keep fighting.


  10. #110
    Senior Member Joe B's Avatar
    Join Date
    Jul 2001
    16052 E Andrew Fountain Hills, AZ
    Leo, one group that does have care and cure on their agenda is the PVA. I understand its a struggle of the older guys versus young. Think about it, for example, I am 53 yrd old, if a clinical trial were successful in the next two years it would still taje another 8 yrs of trial to get it FDA approved. That's 10 yrs, add some time to get a doc to administer this cure, 2 yrs for the nerves to regrow and I could be 67 years old and the amt of rehab to "cure" me would be a big burden, doable maybe but very hard at 67. Guess I would be more interested in care at that point.

    Just trying to see things from the other side. I'm still a "Cure First" supporter .

    Joe B

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