Should I join Alzheimer's study?

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  #31  
Old 01-26-2015, 11:28 AM
Villages PL Villages PL is offline
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Quote:
Senior Citizen:....Just say NO. An experimental drug test? You who try to live simply & eat purely?
Thanks for your reply. I did say no. Not in so many words but right after the very first reply on this thread (from naneiben) I called Compass Research and cancelled my appointment. I never thought there would be so many well meaning replies. By the time I came back to this site, I was surprised to find 3 pages of replies. Thanks!

You wonder why, of all people, I made an appointment in the first place. Well, it's just the strange way that it happened, I was caught off-guard. My first thought, as I read the ad in the newspaper, was that it would be an observational lifestyle study and I was excited about the possibility of being a part of it. I've been a participant in one study that has been going on for nearly 20 years now and I like being a part of it (NIH_AARP Diet and Health Study).

When the call came I was surprised to hear that it would be an Alzheimer's study and would involve taking an experimental drug. The very first thing I said to the woman caller was: "I think I should just forget about it because I'm against taking drugs." And it was as if she didn't want to take no for an answer because she then suggested that I get tested first and then make up my mind after talking to the doctor. She reassured me that I would be under no obligation to participate in the study.

So, at that time, I thought, okay, I'll get a free gene test for Alzheimer's. And that was the hook that drew me in. Only a short time later did I start thinking that it might be a bad idea to find out if I have such a gene. And I began to wonder if the doctor would use that test as a way to reel me in as a participant. (Sort of like the car dealer who offers 5 gold coins if you come in to take a test drive.)

Only today did I learn that the results of the gene test would not be disclosed to the prospective participant or to the doctor.
  #32  
Old 01-26-2015, 05:29 PM
Villageswimmer Villageswimmer is offline
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I think, no matter what the OP ultimately decided, this topic made for an interesting, thought provoking discussion. Any hostility or snarky personal remarks were, IMHO, uncalled for. Namaste.
  #33  
Old 01-27-2015, 07:02 AM
senior citizen senior citizen is offline
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Default You made a very wise decision

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Originally Posted by Villages PL View Post
Thanks for your reply. I did say no. Not in so many words but right after the very first reply on this thread (from naneiben) I called Compass Research and cancelled my appointment. I never thought there would be so many well meaning replies. By the time I came back to this site, I was surprised to find 3 pages of replies. Thanks!

You wonder why, of all people, I made an appointment in the first place. Well, it's just the strange way that it happened, I was caught off-guard. My first thought, as I read the ad in the newspaper, was that it would be an observational lifestyle study and I was excited about the possibility of being a part of it. I've been a participant in one study that has been going on for nearly 20 years now and I like being a part of it (NIH_AARP Diet and Health Study).

When the call came I was surprised to hear that it would be an Alzheimer's study and would involve taking an experimental drug. The very first thing I said to the woman caller was: "I think I should just forget about it because I'm against taking drugs." And it was as if she didn't want to take no for an answer because she then suggested that I get tested first and then make up my mind after talking to the doctor. She reassured me that I would be under no obligation to participate in the study.

So, at that time, I thought, okay, I'll get a free gene test for Alzheimer's. And that was the hook that drew me in. Only a short time later did I start thinking that it might be a bad idea to find out if I have such a gene. And I began to wonder if the doctor would use that test as a way to reel me in as a participant. (Sort of like the car dealer who offers 5 gold coins if you come in to take a test drive.)

Only today did I learn that the results of the gene test would not be disclosed to the prospective participant or to the doctor.

Ultimately, you made a very wise decision. No harm in exploring.
  #34  
Old 01-27-2015, 10:47 AM
senior citizen senior citizen is offline
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p.s. to earlier post.......

Not all cognitive issues are Alzheimers Disease.....

We have a friend in her 50's who's life has been saved via high tech radioactive isotopes being injected into her liver, etc., etc. for treatment of endocrine cancer these past seven years...........however, the physicians admit that the treatment is now the cause of her "cognitive" downturn........similar to Alzheimers or dementia but not exactly that. She's been treated at a top teaching university, one of the very best in the nation......... Unfortunately, her reasoning abilities, her comprehension, etc. have greatly declined. She is still on borrowed time.

So, if we don't get one thing.......we will surely get another.

Here is the Alzheimers website:
Alzheimer?s Foundation of America - Alzheimer?s Disease and Caregiving Support



Alzheimers Foundation of America
  #35  
Old 01-28-2015, 05:15 AM
OBXNana OBXNana is offline
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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?

It is an individual choice on doing the study and has been discussed on previous posts. I'm interested in knowing if it is a study with the use of medication vs placebo is sanctioned by the Alzheimer's Association (alz.org) or a drug company. I'm rather surprised the Alzheimer's Association would advertise in a news paper when there are thousands of people that volunteer on their site to help with a cure. Not all require the use of medication.
  #36  
Old 01-28-2015, 03:09 PM
Villages PL Villages PL is offline
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Originally Posted by OBXNana View Post
It is an individual choice on doing the study and has been discussed on previous posts. I'm interested in knowing if it is a study with the use of medication vs placebo is sanctioned by the Alzheimer's Association (alz.org) or a drug company. I'm rather surprised the Alzheimer's Association would advertise in a news paper when there are thousands of people that volunteer on their site to help with a cure. Not all require the use of medication.
I don't think the Alzheimer's Association was ever mentioned. The ad in the Daily Sun, which I no longer have, only mentioned Compass Research, as I recall. The address they gave me for testing was: Compass Research, 708 Physician Ct, Leesburg, FL 34748.

If you go to their website, "Compassresearch.com", they have a section for sponsors. They do research for sponsors, which I assume could be a drug company.
  #37  
Old 01-28-2015, 03:53 PM
OBXNana OBXNana is offline
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Originally Posted by Villages PL View Post
I don't think the Alzheimer's Association was ever mentioned. The ad in the Daily Sun, which I no longer have, only mentioned Compass Research, as I recall. The address they gave me for testing was: Compass Research, 708 Physician Ct, Leesburg, FL 34748.

If you go to their website, "Compassresearch.com", they have a section for sponsors. They do research for sponsors, which I assume could be a drug company.
Thanks for the update. You're a deep thinker and I'm certain you will think twice before putting something in your body that is counter productive to your healthy life style. If you have concerns about developing the disease, the Alzheimer's Association is a wealth of knowledge (with what is known) and there are legitimate sites that you can do timed testing to see how the brain cells are performing. More fun than fact, but how fast you respond with a correct answer is a challenge I find entertaining. Once it becomes a frustration, I may not look at it in a different light!
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