Community Chat

[decaf]

@CrazyDaisy  @proudlyfromNJ  Staff at the FDA is under investigation for taking a big kickback to push this drug through, that's what I heard on NBC news. That's the reason these hospitals don't trust to use it.

https://www.nbcmiami.com/news/national-international/fda-head-calls-for-probe-into-approval-of-alzhe...

[NicksmomESQ]

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@proudlyfromNJ wrote:

@CrazyDaisy  You mean like the Covid vaccine? Myself, I wouldn't be as hesitant with the Alzheimer's drug as my Mom turned into a zombie a few years after being diagnosed with it. It was so bad eventually that I prayed every night she would die. She had no mind left at all. I sometimes see hints of this in myself. I would be willing to take anything no matter what the consequences as they couldn't be any worse than what she went through. JMO of course.

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@proudlyfromNJ  I totally agree with you. I personally knew someone who's entire family was wiped out by Alzheimers. First his mother got it it at 42 & died at 49. Then his brother was diagnosed  in his mid 30's & died in his late 40's. In between he got it & died at 42. Then his older brother got it in his 50's & died within a few years.

  This disease is dreadful. I would try anything to avoid ending up like that,period.

[decaf]

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@proudlyfromNJ wrote:

@CrazyDaisy  You mean like the Covid vaccine? Myself, I wouldn't be as hesitant with the Alzheimer's drug as my Mom turned into a zombie a few years after being diagnosed with it. It was so bad eventually that I prayed every night she would die. She had no mind left at all. I sometimes see hints of this in myself. I would be willing to take anything no matter what the consequences as they couldn't be any worse than what she went through. JMO of course.

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@proudlyfromNJ  This particular drug, it's FDA approval and the recent investigation is nothing at all like the Covid vaccine.

The thinly veiled political comments are getting tiresome.

[CrazyDaisy]

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@millieshops wrote:

@CrazyDaisy   Too many possible conclusions to draw to know why Cleveland is not using the drug.  There are so many different iterations of Alheimer's, for example, that it's possible their patients might not really be helped by what the drug might do.  We need their careful investigation, but we also need more info before we draw any conclusions.  Headlines often mislead, but they sell media.

I agrre with @mom2four0418 though --  having been down the Alheimer's path with several family members, I would accept almost anything assuming I knew that disease was already in my system.  

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The reasons were in their statement.

[jellyBEAN]

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@CrazyDaisy wrote:

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@MalteseMomma wrote:

Priced over $4000 

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Believe that is the monthly cost

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Yeah, I read the cost was approx. $56,000/year.

Ka-Ching Ka-Ching

[Witchy Woman]

@proudlyfromNJ 

How terrible for both of you...so sorry anyone has to go through something so horrifing and sad.

Watching my own mother decline in health, taking her to doctor's appointments, hospitals....the worst days of both our lives.

But, when it was all over, I was thankful I was able to be with her to help.

[SloopJohnB]

Whether it be this drug or something else, I sure hope they do find something effective for Alzheimer's.  I lost one parent to cancer and the other to Alzheimer's.  The Alzheimer's was much more painful to go through for everyone involved. And I also fear that I may be getting there sooner rather than later.....😔

[phoenixbrd]

@proudlyfromNJ  @SloopJohnB @millieshops  First instinct, no I would take it at any cost.  Then I read your posts and I am reminded that until you have had an experience, it is difficult to say what you might do in the same situation.  I am so sorry you went through this dreadful disease with loved ones.

[Anonymous032819]

Yet another not-so thinly veiled thread to slam the FDA.

Having gone through Alzheimer's with my dad, yes, I would have tried anything to have slowed or stopped its progression.

Hell, I would've signed him up to participate in clinical trials, if I could've.

Alzheimer's is a horrible, wretched disease that affects the whole family, and not just the person diagnosed with it.

It is insidious, and like a thief, steals your loved one's personality, and changes them completely, until they are a stranger to you.

My dad went from a warm, kind, gentle man, to someone who was combative, throwing punches, and had to be sedated, and wanted to go around naked.

You bet your sweet asp I would've tried this drug on my dad, even if it only offered a teeny, tiny, sliver of hope.

It's still HOPE!

[CrazyDaisy]

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@Anonymous032819 wrote:

Yet another not-so thinly veiled thread to slam the FDA.

Having gone through Alzheimer's with my dad, yes, I would have tried anything to have slowed or stopped its progression.

Hell, I would've signed him up to participate in clinical trials, if I could've.

Alzheimer's is a horrible, wretched disease that affects the whole family, and not just the person diagnosed with it.

It is insidious, and like a thief, steals your loved one's personality, and changes them completely, until they are a stranger to you.

My dad went from a warm, kind, gentle man, to someone who was combative, throwing punches, and had to be sedated, and wanted to go around naked.

You bet your sweet asp I would've tried this drug on my dad, even if it only offered a teeny, tiny, sliver of hope.

It's still HOPE!

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Unfortunately there are many horrible diseases out there.  This is not a clinical trial were you know the risks.  This is a fully vetted treatment that two prestigious hospital systems are passing on the drug.  One says it is not effective or safe, the other has serious concerns about the objectivity of FDA personal.