creekmom Posted October 18, 2015 Share Posted October 18, 2015 http://www.npr.org/sections/health-shots/2015/10/17/448323916/can-a-cancer-drug-reverse-parkinsons-disease-and-dementia?utm_source=facebook.com&utm_medium=social&utm_campaign=npr&utm_term=nprnews&utm_content=2042 Just wanted to share! 8 Quote Link to comment Share on other sites More sharing options...
Annie G Posted October 18, 2015 Share Posted October 18, 2015 MIL has Lewy Body dementia- thanks for posting this article. Quote Link to comment Share on other sites More sharing options...
maize Posted October 18, 2015 Share Posted October 18, 2015 Thanks for sharing, that is exciting! Quote Link to comment Share on other sites More sharing options...
IfIOnly Posted October 18, 2015 Share Posted October 18, 2015 Thank you for sharing. My parents are not interested in most mainstream things like drugs (been there, done that) so I doubt this would interest them, but I do like to read up on these things since my mom was diagnosed with Parkinson's. The fact that it can cost $1000+ a month and patients would need to take it likely for the rest of their lives makes this sound like a very short-term solution unfortunately. Yep. A friend finally found a med to help her fibro. to the tune of $350 a month. Husband had to take a pay cut (she works from home), and she doubts she'll be able to continue with her med. Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted October 18, 2015 Share Posted October 18, 2015 Thank you very much! :) Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 18, 2015 Share Posted October 18, 2015 I actually teared up reading this...it's amazing! 2 Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted October 19, 2015 Share Posted October 19, 2015 Any news of progress is welcome. Thanks for sharing! 1 Quote Link to comment Share on other sites More sharing options...
Annie G Posted October 19, 2015 Share Posted October 19, 2015 I may have missed the details but I am under the impression this article was released not long after the 6 month trial, which means no long-term research/side effects to report. This is perhaps part of my hesitation for excitement. This illness is devastating. If MIL could regain some of her former abilities even for a short period of time, I think she would believe it to be worth the expense and potential side effects. LDB is making her life miserable and she clearly knows it wasn't always like this. She was nearly 80 when LBD started interfering on a daily basis so long term side effects aren't her highest priority. Much like cancer- people fighting terminal cancer have to weigh whether the treatment to prolong is worth it. I'm guessing this treatment is going to be something like that. It's not going to cure it but if it can reverse the effects or slow the progression... 4 Quote Link to comment Share on other sites More sharing options...
Miss Peregrine Posted October 19, 2015 Share Posted October 19, 2015 Sent the article to FIL. MIL has Parkinson's/dementia. She doesn't know who her kids are anymore. 😢 Quote Link to comment Share on other sites More sharing options...
Annie G Posted October 19, 2015 Share Posted October 19, 2015 I'm sorry. I'm not trying to be insensitive. I was thinking along the lines of a married couple where one regains memory short-term, but the financial costs of the medication (potentially on top of other medical expenses) can't be afforded and then the couple has to go through the memory loss and physical ability struggles all over again. Sounds pretty rough, but might be worth it to them. And yes, depending on age and life span it may not matter to them the long-term effects. My dad has been my mother's primary care giver for years now. He has to do pretty much everything for her (she does not have use of one of her thumbs due to a bad fall related to the balance issues so she cannot properly grip a walker, etc). She is mentally there, but physically weak and suffers from tremors. Trying to feed herself exerts so much energy and she is asking for more help to lift and move the utensil. This is pretty much her one area with the most independence so being able to feed herself is very important. They have outside help twice a week and I know it's not cheap. I just cannot imagine the added cost of medication on top of that. Obviously each person will have their own things to consider before making the decision to invest in this medication and it may make sense for some. My mom is in her 70s and it started impacting her daily life years ago. She's seen dd a couple times and never held her. Her mother had dementia in later life and when I went to visit her (probably the last time I saw her alive) she confused me with my sister and when I tried to correct her I'm not sure she really understood. So yes, I realize the illnesses are devastating. I apologize for being so...grumpy about it. Three years ago today I lost my mom suddenly...removing life support is awful. So I really shouldn't be replying to any thread that's even slightly emotional. I'm glad today is almost over. Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted October 19, 2015 Share Posted October 19, 2015 What would happen to the expense if a lot of people began using it? Wouldn't it go down as long as manufacturers could keep up with demand? We've got the Baby Boom generation in or approaching prime time dementia years. I've always heard that the more use a new technology gets, the less expensive it becomes. Is that correct? Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 19, 2015 Share Posted October 19, 2015 I'm beyond disgusted that in the richest country in the world, where politicians spend BILLIONS on television ads to attack each other, we accept that life saving medication is just too expensive. I call BS. Letting people die a slow, torturous death because it costs too much when we might have a cure is unconscionable. Just totally inhumane. That said, often with drugs this expensive the manufacturer will provide them at a discount, etc. Or insurance covers them, or medicare, etc. But hell, if not, then some super billionaires in this country ought to privately fund something, instead of funding superpacs and such. 3 Quote Link to comment Share on other sites More sharing options...
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