Community Chat

[Vivian]

As I've mentioned previously, I am caring for my husband, who has had Alzheimer's for several years. I was happy when his neurologist initially put him on two meds that allegedly slow the inevitable decline. However, there is nothing that really works. When I told the doctor that the newest medication he prescribed warns: "Can cause brain bleeds and death in dementia patients. Avoid in elderly Alzheimer's patients." All I knew was that it turned my husband into a teetering zombie. When I complained to the doctor, he said "I know but that's all we have right now." The medication he had prescribed is widely given to dementia patients despite the caveats because it calms them down...to the point of semi-consciousness in my opinion. I stopped giving it to my husband. I knew he'd fall down the steps if he stayed on that stuff.

[Anonymous032819]

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@Vivian wrote:

As I've mentioned previously, I am caring for my husband, who has had Alzheimer's for several years. I was happy when his neurologist initially put him on two meds that allegedly slow the inevitable decline. However, there is nothing that really works. When I told the doctor that the newest medication he prescribed warns: "Can cause brain bleeds and death in dementia patients. Avoid in elderly Alzheimer's patients." All I knew was that it turned my husband into a teetering zombie. When I complained to the doctor, he said "I know but that's all we have right now." The medication he had prescribed is widely given to dementia patients despite the caveats because it calms them down...to the point of semi-consciousness in my opinion. I stopped giving it to my husband. I knew he'd fall down the steps if he stayed on that stuff.

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@Vivian 

Have you tried giving your husband marijuana in edible form?

That can also help keep him calm, and less side effects.

You can get edibles in various strengths.

[Duckncover]

I completely agree anything that can help with Alzheimer's would be worth whatever risk is involved. The cost should not prohibit its use if it is determined to actually help, and there should be a law keeping it from costing huge amounts, if anything. If you know anyone who has this horrible disease you would never worry about the risk. I am slowly losing a dear friend to it right now.There are no words to describe the heartache.

[Duckncover]

Why would the FDA want a federal investigation if they have already approved it? 

[Cakers3]

Unless posters have shared their journeys with A, then nobody here can pass judgement on others regarding the FDA.

We do not know what everyone deals with; it is up to each person to do some homework and then consult with her professional as to any drug being approved or has already been approved.

I am not saying anything new, here.

I feel for anyone dealing with the health of a loved one, be it A, Lupus, MS, ALS, Parkinson's, etc.

We can be supportive of everyone without  calling out those questioning the FDA approval of this new drug.

Reading through this thread shows that some have not paid attention to the concerns by reputable medical sources; posters have to decide for themselves and let everyone else be free to do the same.

[Trailrun23]

I saw last night on the news that the FDA has approved another drug that will slow down the progression of Alzheimers disease....but medicaare and medicaid will not be covering it. I am appalled. Almost everyone who has this horrid disease would be eligible for medicare or maybe medicaid....ridiculous not to cover it. Some drs seem to have reservations about the drug...but if a person is declining rapidly, I would think it would be  worth trying it. I need to know more about it though. I lost a friend I had known since 7th grade to Alzhheimer's last summer and she was only 66, She was diagnosed with it only a year earlier and declined rapidly in only a few weeks. My heart still aches when I think of her.

[Northray]

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@SloopJohnB wrote:

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.....😔

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Yep, lost my grandfather to liver cancer and my beloved gran to dementia, and the dementia was the worst of the two, just plain brutal!  The whole family has some sort of PTSD from it.  It's a horrible disease!

[gertrudecloset]

This thread is a over a year old.  Someone post have searched for this thread to post in it.

[Trailrun23]

Medicare and Medicaid won't cover any of it. 

[hullie]

Had to reply since my family has dealt with Alzheimer's. I applaud any movements to expedite any hope these drugs may offer. People can make their own health decisions, the risks are inconsequential with this disease.