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

  1. #21
    Senior Member vgrafen's Avatar
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    updates

    wjm, I use shark cartilage and glucosimine/chondroitin; works great for arthritis and joint problems. Not a direct pain reliever, but in a couple weeks, that ache you get will be gone.

    Jan, swimming IS the way to go. I've been in the pool a couple times now since Brasil, and I love it. Problem is, getting in and out. I need to come up with some kind of affordable lift system to get me in and out without killing my wife and father. Any suggestions?
    ~
    Did a radio show last night; refer to the thread 'up your nose' for details.
    ~
    Treadmill walked three days this week, 12 minutes yesterday. Full sweat, really worked hard, and I went away both encouraged and frustrated, encouraged that I'm beginning to develop a rhythm, frustrated that I've got so damn far to go.
    After I get out of the harness, man, my groin and legs are ringing with sensation for an hour or more. And my spasms are really increasing; can't even lay flat without going sproing!

    Yeah, I, too, wonder what the great difference is between projectwalk and other aggressive therapy systems. I'm sold on their philosophy, just can't access what they're doing.
    ~
    Reply to email from BB:
    My 'plan,' as far as treadmilling goes, is to be consistent and give it 3 days a week for at least another month or so before looking to 'measure my progress.' No, my pts are not convinced I am improving, and in truth, they would rather not be doing it, as I represent a lot of labor-intensive, time-consuming activity. No, it does not bother me to know I am offending people by pushing them farther than they may want. It is the least of my concerns, really. I am sorry for you that you don't have the confidence and desire to demand your therapists' help; like you said, waiting for them to make suggestions to you is taking forever, so why not come in next week and say, 'I'm ready to get up in the harness, I've talked to some plegics who are doing it and it is possible for completes to treadmill and benefit from it, and I want to try.'

    This goes to another of my many issues: damn near every plegic I meet -with exceptions, yeah, I know- but most of us are so passive when faced with our pts and doctors, sitting there politely waiting for them to be pro-active and lead us. Friends, it is OUR JOB to educate and direct these well-intended but mis/under-informed people. Our job, as educated plegics, is to make everybody aware of the potentials, the problems, the concerns, and especially, what we want. If you sit on your ass and wait for THEM to come to YOU, nothing will happen. I'm sorry but many of us need to really challenge and push the status-quo. The doctors and pts aren't going to hate you for challenging them, or treat you any less professionally, and if they do, screw them, go find somebody who'll help. It's YOUR BODY that needs the therapy, so go be a squeaky wheel and revolt!
    ~
    I had two callers last night, one quad, one para, who were enthused by my rants on upcoming breakthroughs but weren't at all convinced there was any meaning for them. The quad said, 'my doctor doesn't believe a cure is possible.' I said, 'then you better find another doctor, right?' figuring my logic was perfect. I was a bit surprised by her response,'no, I like my doctor, and maybe my body is too far gone to even benefit from it. I'm thinking I'm just going to live out my life in this chair and make the best of it.' I got righteous, 'now, don't quit on us, we need everybody in chairs loudly demanding for these therapies, and you have every reason to believe you can reverse the atrophy through hard work, etc.' but her reply was quite telling and left me without an answer,' that's just it, if it takes me having to work three or four hours every day, killing myself just to stand up, I don't think it's worth it.'

    I went on to counter her thinking as best I could, while doing what I could to remain confident, but she pointed out a frightening truth, confirmed by my 12 minute workout earlier in the day: we are looking at insane amounts of exercise to rebuild what we've lost, and for most of us, that alone will prove our undoing. Hell, even in my case, Mr. Exercise, I get despondent and often have to battle my 'who gives damn, I ain't getting anywhere with this crap' attitude.

    Yeah, we got dealt a bad hand, folks, injured in an instant and having to face virtually insurmountable odds to overcome our conditions. And yeah, I DO want to quit, often; hell, if I could just give my wife one day, one HOUR each week away from this nightmare, but I can't, and worse, I have nowhere to quit to.

    vgrafen

  2. #22
    Senior Member kate's Avatar
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    getting in the pool

    V, my husband is a c6 incomplete and he goes to the local pool all the time. He brings along a little step-stool, carrying it upside down in his lap with his towels inside. At the edge of the pool where the water's about up to his chest, he sets the stool down, transfers to it, transfers from it to the patio, scootches forward, puts his legs into the water, then just plops in. It ain't pretty, but who cares?

    When he gets out, he goes over to where the steps are and transfers up them one at a time. Somebody has to bring the chair and the stool over and line them up for him, and then he gets out the same way he got in--first onto the patio, then onto the stool, then up onto the chair. I never touch him. (Actually he'd holler at me if I did, ornery cuss that he is!)

    Hope that's clear, and hope you're well.

    Kate

  3. #23
    Vgrafen, I would think at your level you should be able to get in and out of the pool without a lift. Just takes a little practice. I always transfer first onto a lounge chair (every pool has lounge chairs). Then I lower myself onto the ground and then into the pool. Getting out is easy if you do it at the corner of the pool - that way you can just pull up from the sides. Then use your chair as leverage to pull yourself onto the lounge chair and then into the your chair. Nothing comes easy after spinal cord injury. It's like we become babies all over again and have to relearn everything. The good news: it get so much easier with time. Hang in there... and give 'em hell.

  4. #24
    Senior Member vgrafen's Avatar
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    update

    Email replies:
    BB, yes, I HIGHLY RECOMMEND gait training. No expert, I am nonetheless in the LiteGait system 3 times a week, and I am developing a rhythm. Yeah, it's a bitch getting strapped in, very labor intensive, but it's getting better. The spiritual/psychobabblical boost from doing SOMETHING with my legs is worth it alone. Yesterday I went 13.5 minutes, a real workout for me, drop in the bucket for others. Can't tell you, though BB, if am getting anything back because of it; I sure as hell have increasing sensation, can feel my inner legs during and after the walking, and am going to continue.

    Morgan, please don't take the dualistic 'either/or' position that because I am not presently 'recovered,' Cheng's procedure is a failure. I don't see it like that. I am glad I went through it, and I am ready for upcoming therapies when they are available because much of the cleanup work has been done. I realize many people here believe that such cleanup won't be necessary, they'll be able to use your scar tissue as a bridge for healing, etc, but Cheng rejects that theory, and who am I to argue with him? My point is, it ain't so cut and dried as success or failure, you're either cured or you're defeated. Maybe you approach life like that, but not this kid.
    ~
    Jan, I'm gonna try out getting in and out of the pool this weekend. Truth is, though I'm a para and should be Mr. Do-Everything, I am not yet healed from Cheng's surgery, probably another couple months, and while strong, I'm not all there yet. It's coming... thanks for the advice, though. And hey, how about a full account of your procedure with Kao? I, for one, would really enjoy hearing the details. What say yee?

    vgrafen

  5. #25

    REHAB

    Vgrafen is working very hard on his rehab, and is truly still recovering from Cheng's work on his back, and he is withdrawing from the indwelling effects of exposure to the very hard and arduous lifestyle of ass-sitting at the beach in Brasil, eating and drinking and watching his friends smoke all of his cigars... it was a taxing effort you see to participate in this rigorous trial in Brasil called "vacation". I know because I got a postcard! I know that he is gaining strength daily and recovering...judging from the boot print he left on my butt this afternoon via e-mail, I would say the spirit is the steady-state V so many people love...SO IF IN PRIVATE WAS NOT ENOUGH, I AM STUDYING AND DOING THAT WHICH IS SET OUT BEFORE ME...and yes kicking it back and hard too!!!!

    Hey V? About that tv watching option, what channel is Sponge Bob on?

    HAAAAAAAA..........I'm ready....no really it was just a little caffeine tonight... not too much really , just enough to get by ....huh what? Oh am I rambling again in the cure threads??? Oh sorry boys......

    Mary

  6. #26
    Senior Member vgrafen's Avatar
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    hmmm...

    Listen, I'm not sure who this 'Mary' character is, but let us have little to no levity here. Spinal cord injury is very serious, and we 'victims' must refrain from any attitude other than absolute and rigid seriousness. There shall be no humor associated with our living situations, smile not!!

    Rabelais warned centuries ago of the coming 'humorless storm cloud upon all humanity.' The good doctor was asked to express his greatest frustration. 'It is with the agalaste, those who cannot laugh and enjoy life but demand that we, less serious than they, adopt their deep and unyielding frowns. Of all of man's wars and pestilences, I most fear those with black painted eternal across their brow.' It is with the agalaste I, too, wage my greatest wars, those with cynicism and despair abundant, thsoe who poison the faithful with their negativity.
    ~
    Went 15 minutes on the tradmill yesterday; getting a rhythm, lots of sensation. Increasing spasms wafting about me like filthy exhaust...

    And as for the rigors of Brasil, why, I'm still recovering from the wine and music and nightly parties and excessive eating and having to watch my friends chuff down my stash of Cubans and... and... and thank God I'm back in my nation where people don't feel compelled to commune with their neighbors or stop and linger on the streets with acquaintances, the land where how much money you have is the only criterion for friendship.

    Off for the weekend.

    vgrafen

  7. #27

    "Mary"?

    I don't know who she is either....hmmmmmmmmmm....

  8. #28
    Vgrafen,

    I'd be glad to answer any questions about Dr. Kao's procedure as best I can.
    Truth is, I haven't posted a detailed account of my adventures in Ecuador for a couple of reasons. First of all, its all been said before, in detail.... the nerve graph, the decompression, the omentum, the Schwann cells, the hyperbaric chamber, etc.etc. Secondly, I think most people on this forum have already written off Dr. Kao's procedure - it's yesterday's news. Problem is, if a therapy can provide some return but is not a total cure, (and especially in the case of Dr. Kao's procedure that can take years before the final results are seen) how do we really know for sure whether or not it works?

    In my case, I've had a SCI 22 years, complete and flaccid .... that's most of my life with NO improvement. If I get back anything at all, I will consider it 100% proof positive that Dr. Kao's surgery provided results. Of course, it would still be debated which part of the procedure should be credited. And undoubtably, there would still be some skeptics who simply refuse to believe.... No, no it must be a natural return of function.... Sure, sure I know lots of people paralyzed for 22 years who suddenly got some return.... Or, oh, maybe it's a result of physical therapy after the procedure.

    If and when I see any results, I'll be happy (maybe even ecstatic) to share the news. I have gotten a small amount of increased sensation since the operation but don't consider that real improvement.

    There's one thing I think is interesting. You mentioned in your post that you are still healing from your surgery in Taiwan. And I read once in WebMd that it takes "many months" to recover from decompression surgery. Even though I got very sick two weeks after my surgery (luckily, it was after my series of hyperbaric chamber treatments were completed), I felt like I was back to normal within a couple of months after returning home. Back to the 'ol routine....back to carting my kids around town all day in and out of the Explorer 5 or 6 times a day, back to swimming 3 to 4 miles a week in the pool, back to actually doing some "work" work (I hate working this time of year), not to mention the Kao exercises, standing and stimming and all the rest - in other words, Full Throttle. Makes me wonder, maybe the hyperbaric chamber really does make a difference in how fast you heal after spinal surgery. I'm bettin it does.

    Anyway, I fully agree with you, Vgrafen, "it ain't so cut and dried as success or failure." And I'm glad the mess in my spine has been cleaned up, regardless of whether or not I get anything else out of the surgery.

  9. #29
    Senior Member vgrafen's Avatar
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    Being redundant

    I suggest every one of us serious about recovery begin or maintain our upper body strength. Yesterday in rehab I had another eyeful of the consequences of letting whatever we have remaining slip away:

    I was huffing and sweating in the LiteGait, nearing my 15 minute mark and pleased with my progress when a young guy, 17 or so, para incomplete but recovering, came in to do some work on the parallel bars. Envious, I watched him get up and begin his workout. Within a minute, he hollered, 'I'm done, my shoulders hurt,' and the therapists brought him back to his chair and the session was over. He stayed in the room, waiting for his ride, so when I got unhooked, I rolled over to him.

    'Hey,' I asked, ' how come you didn't push yourself more? You're young and strong, they say you're getting recovery, what's up?'

    'Yeah, I'm recovering, but it's way too slow and I'm tired of it.'

    'I'm tired, too, but if you don't keep exercising, nothing will happen and you'll be too weak and/

    'I don't give a damn,' he spit. 'My shoulders hurt and I just hate all the hard work. Here's a picture of me before my injury.' He took out a photo; big strong guy, now he was half his size, upper body a scarecrow.

    'How come you aren't pushing yourself to stay in shape?' I asked.

    'If I can't look and feel like I used to, I don't even wanna try.'

    I started in on my enthusiasm, pumping him up with cure thoughts, but he was defiant. 'Hey, it hurts too much to get back in shape.'

    'But now you've lost your strength, no wonder your shoulders hurt, you gotta/

    'Yeah, it's easy for you to say,' he cut in, 'you're still in shape and you're all mind-fucked about the cure, but (and here it came!) I'm realistic, I know I'll be in this chair forever.'

    Just then his mother and sister came in. Instantly the coddling started, 'oh, honey, are you ok? Do you hurt? Let's go home.' It was disgusting, the babying, and the kid ate it up. I sat there taking it all in, not responding to his charge that he was realistic and I was, what, some dreamer?

    I figured I'd just let it go; I'm no salesman, and while I'll do what I can to inform people, if your attitude is defeatist, ain't not a lot this guy can do to change you.

    But I just got an email from another patient who I've been speaking to at rehab, and saw the whole thing yesterday. I'll post the entire thing:

    'V, that kid will never walk again. Why? Because it's too hard. I talked to him the other day when you left, and he thought you were incomplete like him; he was pissed at you because he thought you shouldn't be there at rehab wasting everybody's time, and you were so 'up' around everybody that you were a total fake. I didn't really defend you, but I think a lot of people are like him: they just don't want to do what it takes, and they have no faith. Pity the guy, you know?'

    Yeah, pity him, for sure. No, I don't need any defending, but I am struck by what he thought he saw in me, an 'incomplete who shouldn't be there,' a 'fake.'

    I'll tell you what makes me different than the defeatists: I keep chipping away, despite evidence to the contrary or anybody else's opinion. I WILL walk again, because I'm doing what I can each day to crawl out of this damn cavern. It's a crawl, folks, and it'll be the same thing for all of us no matter the surgical/non-surgical procedure. We will have to rebuild our bodies, maintain our strength, stretch our tightened ligaments; I can barely straighten out now, after almost and only 3 years in this chair, but I will do it.

    Let me play Father for a moment: do your range of motion, your pullups and weight training, lay on your stomachs and stretch out, eat sensibly, chill the boozing and sweets and crap foods; all of this contributes to poor attitude, and poor despondent attitude is the strongest impediment to recovery. Quads, get FES and get exercising, no excuses!

    Yeah, therapies we can access are a few years away, but they'll be here and yet if you ain't prepared, it'll pass you by 'cause you won't have strength of body or will. The difference is passivity vs. activity; I weigh in with the actives.
    ~
    On this same theme, I've been receiving emails from a very despondent guy back east. He's of the opinion that I have some secret he is not privy to, and is quite demanding. I will herein reply for all the world to see, his name not important.

    Friend, the reason we suffer in our plegic conditions appears clear enough to me: life, in and out of these chairs, is a series of tests. Perhaps, as some speculate, we set up our tests before each lifetime, hoping to learn something vital in order for our souls to progress. We learn and grow, we persevere with dignity and grace, or we don't learn and instead bitch about our conditions, find fault with everything and everyone, and doom ourselves to repeating our misery now and in the next life.

    I cannot buy the argument that our accidents and injuries came as a result of random or meaningless events, and that we are in some way mere victims of life's randoms. Nothing in this life is random or without meaning, though the meaning may not be initially clear. Does that mean that I invited my 90 mph biff, that Arnold, my rehab pal, sought the bullet that split his cord, that MikeK, somehow before this lifetime, decided to fly off the gravel patch on that twisted road? I cannot say with certainty, as none of us can, but it makes more sense to me than a universe in which things just happen.

    So are we responsible for what has taken place? I say, sidestep that irresolvable issue and ask instead, 'how can I now assume responsibility for what took place and make my life and those around me as good as it may be?'
    That is the issue for me, learning to bear up and still enjoy despite the horror of our condition. It just may be that we set this beast in motion for us to learn and grow from. The alternative is too frightening, in my mind, and those bitter over fate and what has happened to them, somehow now or later, must come to grips and take something beneficial with them. There is nothing else we can do; being passive and whining, 'why me?' is no solution, and in fact, only burdens our families and friends unnecessarily.

    Remember, our time of suffering, though interminable each day, is but short. One day, you will be freed, you will have recovered, either in this body or moving on to the next plane. It is your 'duty to bear up,' as Occelus of Cheos says, 'with dignity and grace.'

    Any other response is a shovelful of shit tossed in the face of the Creator.

    vgrafen

    [This message was edited by vgrafen on Jul 24, 2002 at 02:24 PM.]

  10. #30
    vgrafen, I want to thank you for your posts and your inspiring attitude. Somebody should put the title of this topic in the lyrics of a country and western song. Wise.

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