Should I join Alzheimer's study?

» Site Navigation
Home Page The Villages Maps The Villages Activities The Villages Clubs The Villages Book Healthcare Rentals Real Estate Section Classified Section The Villages Directory Home Improvement Site Guidelines Advertising Info Register Now Video Tutorials Frequently Asked Questions
» Newsletter Signup
» Premium Tower
» Advertisements
» Trending News
» Tower Sponsors




















» Premium Sponsors
» Banner Sponsors
» Advertisements
Closed Thread
Thread Tools
  #16  
Old 01-23-2015, 08:40 AM
onslowe onslowe is offline
Senior Member
Join Date: Jun 2010
Location: Manhattan, the Bronx, Eastern LI, Village of Woodbury
Posts: 419
Thanks: 0
Thanked 1 Time in 1 Post
Default

Quote:
Originally Posted by Average Guy View Post
Why is it that people make jokes about Alzheimer's disease? People don't seem to joke about other deadly diseases with no cure. For people who have had relatives or other loved ones suffer and die from this disease, it is hard to find the attempted humor as funny.
Gracie's post above is excellent. My wife and I took care of my mother for more than six years in our house. Twenty four hours a day. One's mother, who back when, was one's mom who was all love, caring and wisdom. The change is radical and heart wrenching, and one of the greatest thank you's children can give in returning care and comfort.

Because we are human, and not trained as either caretakers or unfeeling robots, we need to release pressure, often with the loved one. And yes, joking is a release and a needed one. It doesn't detract from the quality of caregiving or the sadness of the overall situation - it allows one to get through it as certain times.

Maybe this is a bit off topic, but I remember, back in NYC, many many of my friends were police officers. The way they could laugh at some of the things they saw and encountered on their jobs astounded me. They made light of some really bad situations, and they told me why. It made sense, and joking and kidding in these situations makes sense too.
  #17  
Old 01-23-2015, 10:19 AM
Average Guy Average Guy is offline
Senior Member
Join Date: Nov 2013
Posts: 350
Thanks: 10
Thanked 2 Times in 2 Posts
Default

Quote:
Originally Posted by graciegirl View Post
I think because it is a way to divert thoughts from the awfulness of it and the fact that at this point we haven't a cure.

I do it myself sometimes, joke about memory loss.

The burden of care is so overwhelming to the one in charge that there is nothing I can find to say. It is one of the hardest jobs any human is called to do.

It just isn't just the endless questions, or the erratic behavior or the fading right in front of you of someone you so love. It is also the never being off duty, the physical work and the terrible expense and the hopelessness.

Perhaps someone can post the link to The National Alzheimers Association. It is a worthy recipient of our support. Both with money and with time to spell a family member.
Your points, as usual, are well taken.

I certainly understand from time to time caregivers or loved ones needing a release from the burden. What I find disturbing is jokes or insensitive comments from people who have been fortunate enough to never experience personally the devastation that the disease causes.

Having said that, I think that most people who make the comments are not mean people, they just do not understand how not everyone may see their comments as humorous.
  #18  
Old 01-23-2015, 10:55 AM
Gerald's Avatar
Gerald Gerald is offline
Senior Member
Join Date: Sep 2010
Posts: 351
Thanks: 0
Thanked 59 Times in 9 Posts
Default

testing any drug is very dangerous , that is why they test it. to find out not only if it works but other side effects. so you decide .
  #19  
Old 01-23-2015, 10:55 AM
spring_chicken spring_chicken is offline
Veteran member
Join Date: Oct 2014
Posts: 882
Thanks: 0
Thanked 3 Times in 3 Posts
Default

Quote:
Originally Posted by Average Guy View Post
Your points, as usual, are well taken.

I certainly understand from time to time caregivers or loved ones needing a release from the burden. What I find disturbing is jokes or insensitive comments from people who have been fortunate enough to never experience personally the devastation that the disease causes.

Having said that, I think that most people who make the comments are not mean people, they just do not understand how not everyone may see their comments as humorous.
How do you know, on a message board or anywhere else, who has and hasn't been affected by the disease? I have a very large circle of friends and acquaintances and don't know a single one who has never been affected by it. I would venture a guess that most if not all who offended you in this thread have, also.
Wouldn't it disturb you much less if you didn't make those assumptions?
  #20  
Old 01-23-2015, 10:59 AM
graciegirl graciegirl is offline
Sage
Join Date: Mar 2008
Posts: 39,375
Thanks: 4,171
Thanked 4,653 Times in 1,591 Posts
Send a message via AIM to graciegirl
Default

Quote:
Originally Posted by spring_chicken View Post
How do you know, on a message board or anywhere else, who has and hasn't been affected by the disease? I have a very large circle of friends and acquaintances and don't know a single one who has never been affected by it. I would venture a guess that most if not all who offended you in this thread have, also.
Wouldn't it disturb you much less if you didn't make those assumptions?

Making assumptions is what people do. Then they talk and then they listen and then they learn.
  #21  
Old 01-23-2015, 12:53 PM
Barefoot's Avatar
Barefoot Barefoot is offline
Sage
Join Date: Jul 2007
Location: Winters in TV, Summers in Canada.
Posts: 17,681
Thanks: 1,681
Thanked 238 Times in 180 Posts
Default

Quote:
Originally Posted by Villages PL View Post
If I have such a gene I will likely be persuaded to take medication which will have some sort of side effect.
You have posted many, many, many times that you never take drugs of any kind.
It is obviously something you consider extremely important.
Why on earth would you even consider taking an experimental drug with unknown side effects?
I just don't get it.
__________________
Barefoot At Last
No act of kindness, no matter how small, is ever wasted.
Saving one dog will not change the world, but surely for that one dog, the world will change forever.
  #22  
Old 01-23-2015, 12:56 PM
graciegirl graciegirl is offline
Sage
Join Date: Mar 2008
Posts: 39,375
Thanks: 4,171
Thanked 4,653 Times in 1,591 Posts
Send a message via AIM to graciegirl
Default

Quote:
Originally Posted by Barefoot View Post
You have posted many, many, many times that you never take drugs of any kind.
Quote:
Originally Posted by Barefoot View Post
It is obviously something you consider extremely important.
Why on earth would you even consider taking an experimental drug with unknown side effects?
I just don't get it.


Good point.


And the study would probably not take VPL because of his rather unusual diet. I am sure they are seeking people who consume a more general diet. Usually studies like to stay within the framework of certain perimeters.
  #23  
Old 01-23-2015, 01:00 PM
Villageswimmer Villageswimmer is offline
Platinum member
Join Date: Feb 2011
Posts: 1,859
Thanks: 2
Thanked 642 Times in 224 Posts
Default

Quote:
Originally Posted by Barefoot View Post
You have posted many, many, many times that you never take drugs of any kind.
It is obviously something you consider extremely important.
Why on earth would you even consider taking an experimental drug with unknown side effects?
I just don't get it.

Does it really matter? Perhaps OP just wanted to generate a discussion. No harm done.
  #24  
Old 01-23-2015, 03:32 PM
Villageswimmer Villageswimmer is offline
Platinum member
Join Date: Feb 2011
Posts: 1,859
Thanks: 2
Thanked 642 Times in 224 Posts
Default

///
  #25  
Old 01-23-2015, 07:35 PM
KeepingItReal's Avatar
KeepingItReal KeepingItReal is offline
Veteran member
Join Date: Jul 2012
Posts: 915
Thanks: 0
Thanked 0 Times in 0 Posts
Default

Quote:
Originally Posted by GolfGirl122 View Post
Back to your question, it was generous of you to even consider participating in this study, however, your involvement may be more than it appears on the surface.
Would I want to know beforehand, probably not. If I did know, would I want a placebo, probably not. Would I participate, probably not. IMHO. By the way, I am very cynical of most "studies", for every study, there is another study to prove just the opposite.
There is a really big difference in clinical trials and studies. I think some paint them the same with a really big brush.
__________________
Better Days Are Ahead
  #26  
Old 01-24-2015, 02:57 AM
Bonanza's Avatar
Bonanza Bonanza is offline
Platinum member
Join Date: Oct 2013
Posts: 1,985
Thanks: 0
Thanked 5 Times in 4 Posts
Cool

[quote=Villages PL;999396] If I have such a gene I will likely be persuaded to take medication which will have some sort of side effect. So I may end up doing more harm than good.



Quote:
Originally Posted by Barefoot View Post
You have posted many, many, many times that you never take drugs of any kind.
It is obviously something you consider extremely important.
Why on earth would you even consider taking an experimental drug with unknown side effects?
I just don't get it.
Barefoot hit the nail on the head. As she has mentioned, you have ongoingly said in your ad infinitum threads and posts, how you feel about taking medications. Of course, not everyone has a side effect from a medication and not everyone will have the same side effect from the same medication either.

So I question, why this thread? You already know what you are going to do. You knew before you made this post.
__________________
A Promise Made is a Debt Unpaid
~~ Robert W. Service ~~
  #27  
Old 01-24-2015, 10:07 AM
Villages PL Villages PL is offline
Sage
Join Date: Sep 2011
Location: Belvedere
Posts: 5,280
Thanks: 0
Thanked 0 Times in 0 Posts
Default

Quote:
Originally Posted by naneiben View Post
Does it really matter? Perhaps OP just wanted to generate a discussion. No harm done.
Thank you, naneiben. Great reply!
  #28  
Old 01-24-2015, 10:12 AM
graciegirl graciegirl is offline
Sage
Join Date: Mar 2008
Posts: 39,375
Thanks: 4,171
Thanked 4,653 Times in 1,591 Posts
Send a message via AIM to graciegirl
Default

Quote:
Originally Posted by KeepingItReal View Post
There is a really big difference in clinical trials and studies. I think some paint them the same with a really big brush.

Always learning. What is the difference?
  #29  
Old 01-24-2015, 09:50 PM
KeepingItReal's Avatar
KeepingItReal KeepingItReal is offline
Veteran member
Join Date: Jul 2012
Posts: 915
Thanks: 0
Thanked 0 Times in 0 Posts
Default

Quote:
Originally Posted by graciegirl View Post
Always learning. What is the difference?
Basically the drug has already been approved and on the market for a study to be done. Not so with clinical trials.

FAQ: ClinicalTrials.gov - Clinical Trial Phases

https://clinicaltrials.gov/ct2/about...s/learn#WhatIs


This would be a clinical trial:

Quote:
Originally Posted by Gerald View Post
testing any drug is very dangerous , that is why they test it. to find out not only if it works but other side effects. so you decide .
__________________
Better Days Are Ahead
  #30  
Old 01-25-2015, 06:43 AM
senior citizen senior citizen is offline
Sage
Join Date: Sep 2008
Posts: 4,813
Thanks: 0
Thanked 0 Times in 0 Posts
Default Just say no

Quote:
Originally Posted by Villages PL View Post
I responded to an ad in the Daily Sun that was looking for healthy people at least 65 years of age. I thought the study would be about lifestyle where they compare one group with another.

But I got a call yesterday and found out that they will be testing a drug. It will likely be a double-blind study with half the group taking a placebo and half taking the active ingredient. It's not intended to be a cure but to see if it helps to forestall dementia.

I have an appointment to get a blood test to see if I have a gene for Alzheimer's. Only those who have such a gene will be accepted into the study.

I'm not sure I want to know whether I have the Alzheimer's gene or not. Having an Alzheimer's gene does not mean one will necessarily get Alzheimer's. If I have such a gene I will likely be persuaded to take medication which will have some sort of side effect. So I may end up doing more harm than good.

Should I go for the blood test? What would you do?


Just say NO. An experimental drug test? You, who try to live simply & eat purely?

When my own mother, now deceased twelve years, was in the end stages of Alzheimers (the last 18 months in a skilled nursing home, in the Alzheimers/Dementia wing) I was called by a physician doing the same type of studies you mention above.

I listened politely.........but told him in no uncertain terms that I could not put her through it.........explaining to him how the Aricept had NOT been for the better after being prescribed by her specialist on aging.......so no "experimental" drugs for mom.

I also told him that I had read his article in our local newspaper which led me to look up this "experimental drug"......& its horrific side effects.....such as liver damage & on & on.......

He was moderately surprised......saying "Well, I see you've done your research".........I told him I just could NOT put her through that........I also knew they only offer these drugs to those at the end.

A few years earlier, her physician had put her on Aricept.......she immediately lost her appetite & stopped eating......dropping back down to 85 lbs. from the 100 lbs........these are common side effects which are known. She also got dizzy from it. After a short hospital stay where they put her through battery of tests, her internist (who was our neighbor as well) told me, "Your mom is in amazingly excellent health for her age (except for the dementia); her lungs are those of a younger person, her bones, her heart, etc., etc., etc........she was still walking briskly until the Aricept.

Long story short........after I said NO to the experimental drug, she passed away about a month later.......peacefully with palliative care, comfort care........at age 91. I just couldn't see an experimental drug.......with her as a test subject.

Initially, I took care of her for six years in our own home.......she had "Sundowners Syndrome" & would get up in the middle of the night & walk all around the house getting into mischief. I won't go into that......but I could write a book, believe me. I prepared her meals, bathed her, dressed her........etc. I wish I would have kept her at home, truthfully......as she was content.

However, once at "daycare" (8 a.m. to 3 p.m. five days a week) she fell over a parking log.........hurt her arm (the activity assistants were not really watching these elderly folks); after that she could no longer get into the bathtub or out of the bathtub, so I began showering her.........but she was AFRAID of the shower.

Long story short (again)......a nice community care home, along with lots of her old friends from the senior center, was her new "home" (after being with us for six straight years). This is where the Aricept "dizzy incident" happened.........she rose from her chair; a painter heard her say, "Oh, I feel dizzy" & they called an ambulance........later after numerous brain wave tests, internal tests, everything a hospital does...........the doc called to tell me she was amazingly HEALTHY.........

It wasn't till she hit 90 that she went to a regular nursing home.
At the end of that she was in diapers & a wheelchair.......that's when the experimental drug was suggested. He was a little PUSHY however finally accepted that I wasn't going to put her through it......obviously there was NO TURNING BACK.

Believe it or not, I'm not worried about getting Alzhiemers.

Lots of our friends parents had it........& were all in the same nursing home........the nurses & aides were all angels of mercy.

Her passing was very peaceful.
Every day I wish I had her back. There is no love like a mother's love.
Our dear cousin & friend just lost her 95 year old mom to Alzheimers in New Jersey. Wake is today. Funeral is tomorrow.
Huge second snowstorm supposed to hit them AGAIN.......and also Boston area...........as well as us, again.
Closed Thread

Thread Tools

You are viewing a new design of the TOTV site. Click here to revert to the old version.

All times are GMT -5. The time now is 12:33 AM.