8 ms·

Alzheimer's is the cruelest of illnesses and the loved ones of the victims suffer as much as the victims. The allure of this theory, in my view, is that if you

by mabbo 8y ago

Alzheimer's is the cruelest of illnesses and the loved ones of the victims suffer as much as the victims. The allure of this theory, in my view, is that if you could somehow turn this into a treatment, people would give you whatever money you demanded for it. You want $200,000? We'll find it, somehow, just make Mom remember who I am, please.

maxerickson 8y ago
The amusing thing about your "cynicism" here is that $200,000 would be a substantial savings compared to what happens now, never mind the huge value an effective treatment would provide. In the US, the government (and thus society at large) bears much of the cost: http://act.alz.org/site/DocServer/2012_Costs_Fact_Sheet_version_2.pdf?docID=7161 http://act.alz.org/site/DocServer/2012_Costs_Fact_Sheet_vers...
- hwillis 8y ago
  4-5 years of a nursing home vs cured alzheimer's isn't even a hard decision
  - Berobero 8y ago
    Looking at ~350k-400k for my dad if he lives another 5 years. Given his spending before Alzheimer's 200k would be an easy choice for us even even from a purely cold financial perspective.
- sandworm101 8y ago
  And you have fallen into a different statistics trap. The number that matters isn't the cost of treating the patient. What matters is the increased lifetime costs of a paticular disease over the average. We all have to die of something. Diseases like lung cancer are cheap. The patients are either cured or dead relatively quickly. Demential is slow. Costs pile on for decades, starting often with forced early retirement long before formal medical costs are noticed. But we still have to normalize for the fact that, be it cancer, heart disease or dementia, most all of us will eventually need expensive care for some number of years.
  - Spooky23 8y ago
    Nursing homes are among the cruelest and most in humane institutions, worse than prison in many ways. Anything that avoids nursing home days is worth it’s weight in gold.
    - 14 8y ago
      I have worked in many as a care aid providin direct care to residents. I worked for 7 years in one facility that worked with advanced Alzheimer's and dementia like condition clients. I would not describe the nursing home as cruel or in-human, though to a person with sound mind it certainly would. The people who resided there simply could not live alone. They would soon be seriously hurt or die. So yes when they enter the facility they don't have all the same freedoms as you and I. It is not safe. They leave ovens on, let strangers have access to their money, go wondering in the night no regard to weather or other important factors and so on. Now on the family side of things they have been probably spending months trying to manage their loved one and at the same time are grieving the loss of that loved one as they watch the person they once knew fade away. Every hour for the family is spent wondering if mom or dad is safe at home and eventually their lives come to a halt and they start to experience care giver burn out. The facility provided a safe harbour for their loved ones. We ensured medications were taken on time. That they would get up in the morning and put on clean clothing and wash up as needed. We tried to entertain the residents with music, games and various activities. The facility I worked at made it so the families could finally breath and know their loved on me was safe at the end of the day. I hope others find the nursing homes they deal with to be the same experience.
      - tsomctl 8y ago
        My grandpa spent the last several years of his life with Alzheimers in a nursing home. Furthermore, I spent several years as a telephone technician, and I worked plenty in nursing homes. My overall impression (at least of the ones in my county) is that they are poorly managed and the employees are overworked, and presumably are very underfunded. My grandpa received excellent care, but that was because my grandma went in almost every day to check in on him. There were several occasions when she raised hell because he wasn't being taken care of properly.
mariuolo 8y ago
> The allure of this theory, in my view, is that if you could somehow turn this into a treatment, people would give you whatever money you demanded for it. You want $200,000? We'll find it, somehow, just make Mom remember who I am, please. Experts please correct me if I'm wrong, but even if this theory were to be proven true, how could it help anyone once the damage is done?
- deleted 8y ago
  [deleted]
- endymi0n 8y ago
  I won‘t speculate about the feasability in humans, but at least in a mouse model, it looks like it‘s possible to at least partially reverse some symptoms: https://www.sciencedaily.com/releases/2018/02/180214093712.htm https://www.sciencedaily.com/releases/2018/02/180214093712.h...
- tim333 8y ago
  I'm wondering, after the recent finding that herpes anti virals can reduce the chance of getting alzhemiers by up to 10x whether its worth trying them on my dad who's got some kind of dementia. Not sure if it's got a chance of working. The drugs are fairly cheap widely available and low side effects - the same stuff you take for cold sores. I guess the idea would be if you could control viral stuff the bodies normal repair mechanisms could help.
  - 14 8y ago
    It sounds like you take some concern into your dads health and that you care. I would encourage you to be open and ask questions and find the information you need to help how you can. Maybe that is talking to your mom or if he is alone perhaps start a conversation with his doctor. If this is just something you have noticed but hasn't gone through the doctor I highly encourage you to do so. There are several causes to dementia. One being Alzheimer's as most know example but there are other types of dementia like vascular dementia where medications absolutely can help to some extent. Anyways don't be afraid to ask the questions. Wish you and your family best regards with all this.
sandworm101 8y ago
This research could make it only more cruel. Proof that it is caused by a germ, that is may be catching, would suggest that sufferers should be isolated from healthy people to prevent spread of the infection. Id be happy if it were caused by bacteria or a virus. Those we can deal with. But what if it is a prion like bse? Could it linger in houses? Are nursing homes now a biohazard? Dark days. The link between viruses and some cancers already points to some scary realities. Perhaps the kids shouldnt visit grandma in hospital. Imagine being a kid with cancer when your classmates learn that they might catch cancer from you? It could be like the early days of the AIDS panic again.
- tim333 8y ago
  It's almost certainly not infectious in that kind of way or you'd notice the nurses in the old folks homes getting it.
  - foobarian 8y ago
    Worst case: they are getting it, but not finding out until they themselves reach old age.
    - jjeaff 8y ago
      I think even that would be noticed by now. If almost every person that worked in a nursing home 30 years ago are getting Alzheimer's.
      - sandworm101 8y ago
        But why assume that people who work in nursing homes will be more exposed? Work is only part of the day. A great many more people live with elderly/dementia patients in their homes. We are all in contact with such people daily. If there were a germ that we could 'catch', I wouldn't assume that people in nursing homes were a special population. We may all have it.
  - sandworm101 8y ago
cmurf 8y ago
And that is but one reason why our system of health care is immoral. Not amoral. People who are sick, their families watching, are not able to make rational economic decisions. These things should be decided when we are rational, as a society, and my preference is the "veil of ignorance" approach provided by John Rawls. If you don't know what disease you get, what your native tongue is, whether you're rich or poor, whether you're Muslim or atheist, man or woman or agender or other, family person or nomad - what kind of society would you want to build, and how should and would that society treat everyone as fairly as possible. There is an exploitation in waiting, literally waiting, for people to get sick to have this conversation and decision making, as if health care is a product like any other, where some people will choose to buy even a chance, and others will admit defeat even with decent odds of success just because they can't afford it. But we also take it farther, where a bulk of the cost and the cost increases, are masked from the actual consumer by employer paid health care. Every single time I talk to people who do not buy their own "aging and sick care maintenance plan" I'm impressed by how incredibly ignorant they are of cost. Average cost for a sore throat doctor visit, $603. If you aren't shopping, or aren't able to shop, how is this in any way an informed free market? It's like we've gone both anti-socialism and anti-capitalism at the same time to come up with the world's worst possible way of doing health care. Imagine being behind the veil of ignorance and saying: only rich people should not have to worry about their health and sickness and aging, the middle class and poor properly should always wonder. And if really bad things happen through no fault of their own, they should properly be bankrupt. And none of this should be transparent or obvious or understandable by the average person. That is a good society that builds trust. Of course no one would say that, except maybe comedians and wicked people.
- scarecrowbob 8y ago
  I haven't thought or Rawls in quite a while. The idea of a "veil of ignorance" as a mode of capturing the implications of some political position is a useful, wide-ranging, and easily digestible ethical concept; I'm going to add it back into my intellectual tool bag for when I am trying to discuss ethics with folks. Thanks for the reminder.
narrator 8y ago
If anyone has been looking at TauRX's phase 3 trials[1], methylene blue is ridiculously cheap, has been around for 100 years and stops Alzheimers progression better than any other drug. Tau is working on a slightly modified form that is basically putting it in a capsule and they'll sell it for $50 a pill probably, but that's the only way that anyone will believe it actually works. Methylene blue is a potent antimicrobial that easily penetrates the blood brain barrier, so it working so well would be consistent with Alzheimers being an infectious disease. [1]https://content.iospress.com/download/journal-of-alzheimers-disease/jad170560?id=journal-of-alzheimers-disease%2Fjad170560 https://content.iospress.com/download/journal-of-alzheimers-...
- delbel 8y ago
  thanks for your post. That would be funny if the cure is to drink the "Methylene Blue Kool Aid"
- tcj_phx 8y ago
  Methylene blue is also an monoamine oxidase inhibitor. I add it to my dog’s food to boost her metabolism. She blew her knee out a year ago (common injury for large 10yo dogs) but has mostly recovered without the surgery the vet said she’d probably need. (I use a variety of interventions with her.) Methylene blue should not be combined with the later anti-depressants that focus more on serotonin (SSRIs, etc.), as this can cause serotonin toxicity: https://www.apsf.org/article/methylene-blue-and-the-risk-of-serotonin-toxicity/ https://www.apsf.org/article/methylene-blue-and-the-risk-of-... > Tau is working on a slightly modified form that is basically putting it in a capsule and they'll sell it for $50 a pill probably, but that's the only way that anyone will believe it actually works. Patent medicines [1] are still as popular as they ever were. Science made some inroads in the early 20th century, before the hucksters regrouped, with new prescription-only FDA approved nostrums. [1] https://en.m.wikipedia.org/wiki/Patent_medicine https://en.m.wikipedia.org/wiki/Patent_medicine
- mrtnmcc 8y ago
  Other studies of mild to moderate Alzheimer's patients showed no improvement with Methylene blue, https://www.alzforum.org/news/conference-coverage/first-phase-3-trial-tau-drug-lmtm-did-not-work-period https://www.alzforum.org/news/conference-coverage/first-phas... Also I'd generally be more skeptical as the green urine it produces could be a strong placebo enhancer that is hard to control against.
jlg23 8y ago
This is not specific to Alzheimer but applies to the general concept of market-driven medical research.

by mabbo 8y ago

maxerickson 8y ago

The amusing thing about your "cynicism" here is that $200,000 would be a substantial savings compared to what happens now, never mind the huge value an effective treatment would provide. In the US, the government (and thus society at large) bears much of the cost: http://act.alz.org/site/DocServer/2012_Costs_Fact_Sheet_version_2.pdf?docID=7161 http://act.alz.org/site/DocServer/2012_Costs_Fact_Sheet_vers...

hwillis 8y ago
4-5 years of a nursing home vs cured alzheimer's isn't even a hard decision
- Berobero 8y ago
  Looking at ~350k-400k for my dad if he lives another 5 years. Given his spending before Alzheimer's 200k would be an easy choice for us even even from a purely cold financial perspective.
sandworm101 8y ago
And you have fallen into a different statistics trap. The number that matters isn't the cost of treating the patient. What matters is the increased lifetime costs of a paticular disease over the average. We all have to die of something. Diseases like lung cancer are cheap. The patients are either cured or dead relatively quickly. Demential is slow. Costs pile on for decades, starting often with forced early retirement long before formal medical costs are noticed. But we still have to normalize for the fact that, be it cancer, heart disease or dementia, most all of us will eventually need expensive care for some number of years.
- Spooky23 8y ago
  Nursing homes are among the cruelest and most in humane institutions, worse than prison in many ways. Anything that avoids nursing home days is worth it’s weight in gold.
  - 14 8y ago
    I have worked in many as a care aid providin direct care to residents. I worked for 7 years in one facility that worked with advanced Alzheimer's and dementia like condition clients. I would not describe the nursing home as cruel or in-human, though to a person with sound mind it certainly would. The people who resided there simply could not live alone. They would soon be seriously hurt or die. So yes when they enter the facility they don't have all the same freedoms as you and I. It is not safe. They leave ovens on, let strangers have access to their money, go wondering in the night no regard to weather or other important factors and so on. Now on the family side of things they have been probably spending months trying to manage their loved one and at the same time are grieving the loss of that loved one as they watch the person they once knew fade away. Every hour for the family is spent wondering if mom or dad is safe at home and eventually their lives come to a halt and they start to experience care giver burn out. The facility provided a safe harbour for their loved ones. We ensured medications were taken on time. That they would get up in the morning and put on clean clothing and wash up as needed. We tried to entertain the residents with music, games and various activities. The facility I worked at made it so the families could finally breath and know their loved on me was safe at the end of the day. I hope others find the nursing homes they deal with to be the same experience.
    - tsomctl 8y ago
      My grandpa spent the last several years of his life with Alzheimers in a nursing home. Furthermore, I spent several years as a telephone technician, and I worked plenty in nursing homes. My overall impression (at least of the ones in my county) is that they are poorly managed and the employees are overworked, and presumably are very underfunded. My grandpa received excellent care, but that was because my grandma went in almost every day to check in on him. There were several occasions when she raised hell because he wasn't being taken care of properly.

mariuolo 8y ago

> The allure of this theory, in my view, is that if you could somehow turn this into a treatment, people would give you whatever money you demanded for it. You want $200,000? We'll find it, somehow, just make Mom remember who I am, please. Experts please correct me if I'm wrong, but even if this theory were to be proven true, how could it help anyone once the damage is done?

deleted 8y ago
[deleted]
endymi0n 8y ago
I won‘t speculate about the feasability in humans, but at least in a mouse model, it looks like it‘s possible to at least partially reverse some symptoms: https://www.sciencedaily.com/releases/2018/02/180214093712.htm https://www.sciencedaily.com/releases/2018/02/180214093712.h...
tim333 8y ago
I'm wondering, after the recent finding that herpes anti virals can reduce the chance of getting alzhemiers by up to 10x whether its worth trying them on my dad who's got some kind of dementia. Not sure if it's got a chance of working. The drugs are fairly cheap widely available and low side effects - the same stuff you take for cold sores. I guess the idea would be if you could control viral stuff the bodies normal repair mechanisms could help.
- 14 8y ago
  It sounds like you take some concern into your dads health and that you care. I would encourage you to be open and ask questions and find the information you need to help how you can. Maybe that is talking to your mom or if he is alone perhaps start a conversation with his doctor. If this is just something you have noticed but hasn't gone through the doctor I highly encourage you to do so. There are several causes to dementia. One being Alzheimer's as most know example but there are other types of dementia like vascular dementia where medications absolutely can help to some extent. Anyways don't be afraid to ask the questions. Wish you and your family best regards with all this.

sandworm101 8y ago

This research could make it only more cruel. Proof that it is caused by a germ, that is may be catching, would suggest that sufferers should be isolated from healthy people to prevent spread of the infection. Id be happy if it were caused by bacteria or a virus. Those we can deal with. But what if it is a prion like bse? Could it linger in houses? Are nursing homes now a biohazard? Dark days. The link between viruses and some cancers already points to some scary realities. Perhaps the kids shouldnt visit grandma in hospital. Imagine being a kid with cancer when your classmates learn that they might catch cancer from you? It could be like the early days of the AIDS panic again.

tim333 8y ago
It's almost certainly not infectious in that kind of way or you'd notice the nurses in the old folks homes getting it.
- foobarian 8y ago
  Worst case: they are getting it, but not finding out until they themselves reach old age.
  - jjeaff 8y ago
    I think even that would be noticed by now. If almost every person that worked in a nursing home 30 years ago are getting Alzheimer's.
    - sandworm101 8y ago
      But why assume that people who work in nursing homes will be more exposed? Work is only part of the day. A great many more people live with elderly/dementia patients in their homes. We are all in contact with such people daily. If there were a germ that we could 'catch', I wouldn't assume that people in nursing homes were a special population. We may all have it.
- sandworm101 8y ago

cmurf 8y ago

And that is but one reason why our system of health care is immoral. Not amoral. People who are sick, their families watching, are not able to make rational economic decisions. These things should be decided when we are rational, as a society, and my preference is the "veil of ignorance" approach provided by John Rawls. If you don't know what disease you get, what your native tongue is, whether you're rich or poor, whether you're Muslim or atheist, man or woman or agender or other, family person or nomad - what kind of society would you want to build, and how should and would that society treat everyone as fairly as possible. There is an exploitation in waiting, literally waiting, for people to get sick to have this conversation and decision making, as if health care is a product like any other, where some people will choose to buy even a chance, and others will admit defeat even with decent odds of success just because they can't afford it. But we also take it farther, where a bulk of the cost and the cost increases, are masked from the actual consumer by employer paid health care. Every single time I talk to people who do not buy their own "aging and sick care maintenance plan" I'm impressed by how incredibly ignorant they are of cost. Average cost for a sore throat doctor visit, $603. If you aren't shopping, or aren't able to shop, how is this in any way an informed free market? It's like we've gone both anti-socialism and anti-capitalism at the same time to come up with the world's worst possible way of doing health care. Imagine being behind the veil of ignorance and saying: only rich people should not have to worry about their health and sickness and aging, the middle class and poor properly should always wonder. And if really bad things happen through no fault of their own, they should properly be bankrupt. And none of this should be transparent or obvious or understandable by the average person. That is a good society that builds trust. Of course no one would say that, except maybe comedians and wicked people.

scarecrowbob 8y ago
I haven't thought or Rawls in quite a while. The idea of a "veil of ignorance" as a mode of capturing the implications of some political position is a useful, wide-ranging, and easily digestible ethical concept; I'm going to add it back into my intellectual tool bag for when I am trying to discuss ethics with folks. Thanks for the reminder.

narrator 8y ago

If anyone has been looking at TauRX's phase 3 trials[1], methylene blue is ridiculously cheap, has been around for 100 years and stops Alzheimers progression better than any other drug. Tau is working on a slightly modified form that is basically putting it in a capsule and they'll sell it for $50 a pill probably, but that's the only way that anyone will believe it actually works. Methylene blue is a potent antimicrobial that easily penetrates the blood brain barrier, so it working so well would be consistent with Alzheimers being an infectious disease. [1]https://content.iospress.com/download/journal-of-alzheimers-disease/jad170560?id=journal-of-alzheimers-disease%2Fjad170560 https://content.iospress.com/download/journal-of-alzheimers-...

delbel 8y ago
thanks for your post. That would be funny if the cure is to drink the "Methylene Blue Kool Aid"
tcj_phx 8y ago
Methylene blue is also an monoamine oxidase inhibitor. I add it to my dog’s food to boost her metabolism. She blew her knee out a year ago (common injury for large 10yo dogs) but has mostly recovered without the surgery the vet said she’d probably need. (I use a variety of interventions with her.) Methylene blue should not be combined with the later anti-depressants that focus more on serotonin (SSRIs, etc.), as this can cause serotonin toxicity: https://www.apsf.org/article/methylene-blue-and-the-risk-of-serotonin-toxicity/ https://www.apsf.org/article/methylene-blue-and-the-risk-of-... > Tau is working on a slightly modified form that is basically putting it in a capsule and they'll sell it for $50 a pill probably, but that's the only way that anyone will believe it actually works. Patent medicines [1] are still as popular as they ever were. Science made some inroads in the early 20th century, before the hucksters regrouped, with new prescription-only FDA approved nostrums. [1] https://en.m.wikipedia.org/wiki/Patent_medicine https://en.m.wikipedia.org/wiki/Patent_medicine
mrtnmcc 8y ago
Other studies of mild to moderate Alzheimer's patients showed no improvement with Methylene blue, https://www.alzforum.org/news/conference-coverage/first-phase-3-trial-tau-drug-lmtm-did-not-work-period https://www.alzforum.org/news/conference-coverage/first-phas... Also I'd generally be more skeptical as the green urine it produces could be a strong placebo enhancer that is hard to control against.

jlg23 8y ago

This is not specific to Alzheimer but applies to the general concept of market-driven medical research.