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New Alzheimer’s drug spurs hope among the desperate

If there’s a more inhuman neurological disease than Alzheimer’s, I don’t want to know about it. Because the big “A” is bad enough. Stealing away precious memories and bodily functions alike, leaving behind a confused, amnesiac husk of a person when they should be enjoying the fruits of their labor and grandchildren. It’s not surprising a new study showing dramatic results in mice has spurred hope for some victims on the brink of no return:

(ABCNews) — Because bexarotene is already approved by the U.S. Food and Drug Administration for skin cancer, doctors can legally prescribe it “off-label” for other conditions. But Alzheimer’s experts urge families to temper their hope until the drug is proved safe and effective by years of clinical trials — a tall order for the country’s 5.4 million patients and 14.9 million caregivers. “At this point in time, it would really be unethical for a physician to prescribe the medication and, I think, foolish for the patient to take it,” said William Thies, chief medical and scientific officer for the Alzheimer’s Association.

I don’t know. Hopefully I’ll never have to find out. But if I was slipping away and there was no other hope in sight, I might just risk it. Really, what would someone in that position have to lose?

Comments

  1. michaeld says

    Indeed, I know that if I was slipping away I’d want to take it see if I could be part of a trial preferably. My grandfather had some form of dementia and lived for several years where he just didn’t really know who we were. Having seen that I don’t want that for myself. While I wouldn’t make the choice for anyone else I personally see little difference between loosing my mind and death.

  2. raymoscow says

    It’s similar to all the unproven ‘cures’ for cancer. It would be very tempting for the afflicted person to try them if conventional medical treatments were not likely to work.

  3. says

    I watched that disease destroy my mother; I consider that disease a fate worse than death and I would do anything to avoid it. ‘Desperate’ is not an adequate word for my feelings toward that disease. I’d volunteer for any trial of any drug that was even suspected of being a viable treatment for that disease.

    Alzheimer’s can take decades to manifest in a way that permits a clear diagnosis; by the time its symptoms become noticeable damage has already occurred. The best treatments we have right now can slow down its progression (and even that isn’t a sure thing), but cannot halt or reverse it- this disease is 100% lethal, 100% of the time. The only way to avoid losing your mind is to end your own life before the disease ends it for you- which is what author Terry Pratchett is currently attempting to do, and what I will do if I am ever diagnosed.

    Here’s the real shit of it though: even if there were a proper cure for Alzheimer’s- one that halted and reversed the damage such that a person could recover from it- anything lost would stay lost. Perhaps they could re-learn skills lost, but the memories would be just plain gone. What that means is that even a cure isn’t good enough; there need to be better ways of screening for the condition so that it can be diagnosed and treated before irreparable damage is done.

    The order in which functions and memories are lost is not consistent. One person might forget how to tie their shoes while another might forget their own name- others will lose fine motor control first. Mom lost her communication skills first- all of them. A minor stroke compounded existing damage and wiped them out. She could not write nor type nor form a coherent sentence. Then she lost other learned skills over the years, ultimately being unable to dress or feed herself. Then she lost motor control; she wound up in a wheelchair unable to walk or even sit up straight.

    What she never lost were her personal memories (or at least some of them)- until the second strike that ended her life, she could still recognize her family and even knew some of our names (though she could not fully pronounce them). She maintained awareness of who she was and what she had lost, knew she was losing more of herself all the time, and could do nothing about it. If that doesn’t fit the definition of torture, I’m not quite sure what does.

    There needs to be greater public awareness of this disease. Alzheimer’s is not just one of those things that can happen to people when they get old. There is also an early-onset form of Alzheimer’s- Mom was 61 when she died; she was in her mid-50s when the first symptoms appeared (though it took a few years and many, many visits to neurologists to pin down a diagnosis). She had to have been in her 30s or 40s when the disease first started eating away at her brain.

    Apologies for the wall of text. I’d meant to write a quick reply in the vein of ‘any step forward is good news’ but it sort of got away from me.

  4. says

    Thing is, otften times with cancer there is hope for remission, or even some quaility of life as the disease progresses. That’s not the case with Alzheimer’s, it ravages quaility, annihilates it, and there is no remission. I can see why someone with Alzheimer’s might be even more desperate.

  5. Hercules Grytpype-Thynne says

    It would be very tempting for the afflicted person to try them if conventional medical treatments were not likely to work.

    That’s not a conditional. There is no conventional medical treatment for Alzheimer’s.

    What everyone else said. Having seen firsthand what this disease can do (my mother and both my grandmothers suffered from it, and their families right along with them) you can bet I’d be on this in a heartbeat if I started showing signs of dementia.

  6. says

    My grandmother lived for over 10 years as little more than a pile of flesh. Almost every day she would ask me who that woman was. That ‘woman’ was her daughter. She kind of remembered me, but couldn’t name me, but she seemed to trust me. This was about 14 years before she died.

    My mom is scared as hell about this. Every time she forgets an errand or a phone number she cries because she’s afraid that this means she succumbing to Alzheimer’s. I keep up on all the research and forward it to my mom with my summary, just to keep her hopes up.

    I honestly don’t think she’s anywhere near to the disease, but it’s scary enough just thinking about the possibility.

    The worst part is by the time one realizes that they have dementia or Alzheimer’s, then they are really too late to do anything about it, even if they had contemplated suicide or even extreme treatment options.

  7. raymoscow says

    Alzhemimer’s killed my mother, too — or rather, it was the disease that diminished her life to the point that she was already gone by the time multiple organ failure shut down her body.

    You guys are right that severe dementia such as Alzheimer’s is worse in some ways than other fatal diseases.

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