Should I join Alzheimer's study?

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  #1  
Old 01-22-2015, 12:48 PM
Villages PL Villages PL is offline
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Default Should I join Alzheimer's study?

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?
  #2  
Old 01-22-2015, 12:59 PM
Villageswimmer Villageswimmer is offline
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Run. I think it would be better not to know for a number of reasons.
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Old 01-22-2015, 01:08 PM
Villages PL Villages PL is offline
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Originally Posted by naneiben View Post
Run. I think it would be better not to know for a number of reasons.
Thanks, I think you're right.
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Old 01-22-2015, 03:00 PM
rubicon rubicon is offline
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What was the question again?
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Old 01-22-2015, 03:08 PM
jnieman jnieman is offline
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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?
If they told you that you had the gene, you would worry about it all of the time. Even if you have the gene, who is to say at what age you would even get Alzheimer's? My mom didn't get it until she was 90 years old. I wouldn't do it myself.
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Old 01-22-2015, 06:37 PM
Villageswimmer Villageswimmer is offline
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Is this blood test as accurate as this year's flu vaccine formula?
  #7  
Old 01-22-2015, 06:58 PM
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That should be a study to remember.
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  #8  
Old 01-22-2015, 09:30 PM
Carla B Carla B is offline
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That should be a study to remember.
Oh, Puleez!
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Old 01-22-2015, 09:39 PM
Average Guy Average Guy is offline
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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.
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Old 01-22-2015, 10:29 PM
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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.
My Mom had dementia and some of the things she would say were very funny. Even today we recall and laugh. We are not mocking the disease, just remembering her and knowing she would have a good laugh herself. I was her sole caretaker so I know well the stresses of the disease and enjoyed the humor.
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Old 01-22-2015, 10:36 PM
kaydee kaydee is offline
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To take a medication with side effects when it is not necessary to take it in the first place would be enough answer for me to skip the whole shebang.
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Old 01-23-2015, 07:31 AM
GolfGirl122 GolfGirl122 is offline
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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.
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Old 01-23-2015, 07:41 AM
spring_chicken spring_chicken is offline
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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.
As a person who has had and currently has loved ones suffer from this disease, I don't find it offensive at all. In fact my mother says all the time that her favorite thing about alzheimers is that she gets to meet so many new people.
We're a family that tries to find something to laugh about instead of something to be offended about.
  #14  
Old 01-23-2015, 07:55 AM
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Originally Posted by slipcovers View Post
My Mom had dementia and some of the things she would say were very funny. Even today we recall and laugh. We are not mocking the disease, just remembering her and knowing she would have a good laugh herself. I was her sole caretaker so I know well the stresses of the disease and enjoyed the humor.
My Mom has had this terrible disease for 9 years. We, including her, are always making jokes about her disease with Mom. Laughter is good. It is the other times that are soooo sad.
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Old 01-23-2015, 08:01 AM
graciegirl graciegirl is offline
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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.

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.
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