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Thread: The 4-AP List

  1. #51
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    sue b
    god, I just absolutely hate people like you with minor spinal cord injuries who claim hard work has gotten you to walk. If you sustain a serious T12 injury, without any interventional therapies, walking is out of the question! you are delusional to think that your workout efforts have gotten you up and about, when really whatever your injury was was lightWEIGHT

    sherman brayton

  2. #52
    No personal attacks, please. Wise.

  3. #53
    Brayton, intense advanced PT is considered an interventional therapy. Many people with low incomplete injuries have benefited from 4AP and PT. Based on your earlier posts, you have sensation below your injury level which means that signals are getting through, so you may not be as unresponsive to 4AP as you think.

  4. #54
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    Let's see, let me clarify my "minor" injury for you, Brayton. The walking I do is still therapeutic, not functional. In other words, I spend my time in a wheelchair, just like you. My "minor" injury has left me with sensation in my butt that enables me to feel the pain of sitting in a wheelchair building in intensity throughout the day, so that after about 12 hours I can't stand to be in it any more. That pretty much limits my evening activities to whatever I can do in a recliner, since that's the only place I can tolerate being. Also, I have pretty severe edema in my legs, for which I wear Jobst stockings all day, every day. Still, the swelling gets so bad that I can't stand having my AFO's on by the end of the day. The only walking I am able to do is in the morning. I can't even stand in a standing frame longer than about 10 minutes in the evening because the pain in my feet is so bad. And yeah, I do have some feeling in my feet, enough so that it feels like I'm wearing shoes about 3 sizes too small for me. By the way, I have the same neuropathic pain that other people with SCI have. I wake up with it, I live with it every day. The only time I'm truly free of it is when I'm asleep. Speaking of which...I sleep a max of 2 hours at a time, usually less, because I can only sleep on my side, and it's too painful to sleep on one side for longer than that, so I have to wake up to roll to the other side. The good part is, I probably have to worry less about pressure sores on my butt or sides than some, because I have enough feeling to not be able to tolerate staying in one position for too long.

    I take Ditropan because I have a neurogenic bladder, and the Ditropan is the only way I can get through the day without having to pee every hour or so, which made it almost impossible to get through a day at work - and yes, I work full time - 40+ hours a week. Sometimes I couldn't make it to the bathroom without peeing my pants. Now, at least I can go for about 3 hours without having to pee, and I can usually make it to the bathroom, where I also have to do intermittent cath to pee - just like other SCI's who don't happen to have "minor" injuries. I haven't had a UTI in a year and a half, fortunately, but before that I had five in one year. I also take Fosamax because I have osteoporosis, a recent development from my SCI. The one thing I am grateful for is that I have almost normal BMs, which means I don't need a bowel program. In my book, though, that hardly qualifies me has having a "minor" injury.

    I've never claimed that anyone with SCI can walk if they just work hard enough. Everyone's injury is different. But one thing I'm pretty sure of, NO ONE will be able to walk again if he doesn't work really hard at it. And that's where I am, working hard to see how far I can go. All the whining in the world won't get me back on my feet again. So this post is all the whining I'm going to do. My first post was directed at other people with lower injuries, not at you. It was to counter your constant posts about how hopeless those with lower injuries are, to let them know that there is hope for recovery for many. I don't know if all this hard work will lead to my walking functionally. But I'm not going to stop trying until I know for sure. So far, I don't have the answer. When Fampridine becomes available, that'll one more thing to try.

  5. #55
    Senior Member mk99's Avatar
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    Right on SueB. Keep at it, sounds like you're doing great!

    Have you tried 4AP from a compounding pharmacy?

  6. #56
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    Thanks, Mike! I think I'm doing pretty well, too, considering. But it takes a ton of time and work, and it can be really frustrating. I try not to take my frustrations out on the people around me, particularly my husband, since he has to live with this every day, too, in his own way. I've commented more than once that if I'd put as much effort into anything before my injury as I do into walking now, I probably could have been an Olympic whatever...

    I talked to my physiatrist about 4-AP awhile ago, he wasn't interested in even considering it. A PT told me that all the local doctors would shy away from it since it's not FDA approved. I have no interest in taking it without being under a physician's direction. I'm too chicken. So I'll wait for Fampridine.

  7. #57
    Sue

    if i were you i would seek out a doctor that is familiar with the studies conducted on 4AP. everywhere i've been i've been able to find doctors that are prescribing the drug. and they're not mad scientists either, in my opinion they are the ones most familiar with the clinical studies. there's a great article by dr. young titled "4AP: All You Need To Know." i was unable to find it in a search but perhaps someone else can link it for you, if you haven't read it already. or if you like i can email it to you as i have it on my hard drive.

    we seem to have very similar levels of function, though i am a higher injury at c7. i'm going to start 4ap this week and will update the effects that i notice.

  8. #58
    Sue:

    I strongly believe that you are better off waiting for Fampridine-SR to be FDA approved rather than seeking out an independent pharmacy. The independent pharmacies may not be able to find all of the ingredients or even understand how this medication is supposed to be formulated. If possible, you may want to enroll in the Clinical Trial but it does seem to me that you are pretty busy. I am in the Open Label Study where the demands are fewer.

    PN

  9. #59
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    I am sorry Sue...I was way out of line on my lost post.

    sherman brayton

  10. #60
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    Buckwheat & Paul,

    Thanks for the suggestions about 4-AP. There is just a handful of physiatrists locally, almost all of whom work together. I'm not interested in long-distance care, so I don't really want to look somewhere else. I didn't qualify for the clinical trials for Fampridine-SR. I think they're almost done now, anyway. There's a keen interest in the results of the trial here, the University of Rochester is participating in the trials. I think I'll just wait for the FDA to do its thing. It's not like I don't have anything to do while I'm waiting.

    Brayton, apology accepted. You seem so skeptical of any glimmer of a promise of recovery, yet so quick to believe anything anybody says that reinforces your picture of doom and gloom. Don't be so hard on your own future.

    Sue

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