Would like to be contributor to a study.

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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Rbuchholz4
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Would like to be contributor to a study.

Post by Rbuchholz4 »

I am an 80 yr old male in excellent physical condition. Really! Lost brother to dementia 4 years ago when he was 82. Suicide. Have 80 yr old sister with severe dementia in retirement community. Intended to commit suicide and missed opportunity. Given my good health and maybe not so great genes, I may be able to contribute someway to a study about this all. Looking to identify a study group.
Rbuchholz4
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Re: Would like to be contributor to a study.

Post by Rbuchholz4 »

One mistake - mine. My sister with severe dementia is 90.
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Julie G
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Re: Would like to be contributor to a study.

Post by Julie G »

Welcome, my friend! Good for you for wanting to further the science. You don't mention your ApoE4 status, but I suspect this would be a good study for you to consider. Dr. Michael Greicius of Stanford University is conducting on ongoing study of healthy E4+ seniors to find protective genes. I think you need two copies of E4 if you are 70 years old and one copy if you are 80 and older. We have a handful of members who are already participating who can share more information.
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Jan
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Re: Would like to be contributor to a study.

Post by Jan »

Welcome, Rbuchholz4. Generativity has no age limit, so kudos for your energy and desire to help others. Hope the study Julie mentioned works out for you.
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Re: Would like to be contributor to a study.

Post by raj »

hello Rbuchholz4

welcome to the forum, we all appreciate your intention to contribute by personally offering to participate in the studies. While you are starting to participate I would like to invite you to the primer of this site,

viewtopic.php?f=33&t=1418

here, Dr Stavia a senior member has put a lot of information together and in there contains all relevant information and much more. If you are stuck anywhere please put your questions on the forum and you will be answered by members who are knowledgeable and experienced. The forum has been there for quite long and a big repository of information has built up.

if there is anything specific you are looking for please try the search function within the three stacked cubes in the right top corner of this page or you may even try the wiki within the same cubes where you can find information under different heads of subjects.

we also would like to hear more from you about yourself and If you are interested in sharing with us please post it in "our stories" section which you will find in the " Board Index" in the tip left corner of this page which will take you to "our stories" and by further getting in there you will find " new topic" by clicking on it will open a text box where you can type all that you would like to and hit the " submit button ".

While doing all this or while on the forum if you have any questions post them on the forum and someone will answer your questions.

Welcome again and hope to hear from soon.
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Re: Would like to be contributor to a study.

Post by NF52 »

Rbuchholz4 wrote:I am an 80 yr old male in excellent physical condition... Given my good health and maybe not so great genes, I may be able to contribute someway to a study about this all. Looking to identify a study group.
Hope you are still enjoying excellent physical health in the new month of April! I wanted to let you know of a new study that is looking for people ages 60-85, in good health, with either a first degree relative who had dementia (your sister and brother both qualify) and/or an ApoE gene (which you may have). The study is called the EARLY Trial, because it's trying to get an early start on preventing or delaying Alzheimer's in high-risk populations of senior citizens. It uses a type of drug called a BACE-1 inhibitor, which is designed to greatly reduce the amount of an enzyme called BACE-1 that can lead to formation of amyloid plaques in the brain. ALL of these large clinical trials go through an extensive process of approval and take a while to go through the screening and consent process with anyone interested. You always have the option to say "No thanks!"

BACE-1 has been studied for about 20 years, but only recently have scientists figured out how to hopefully deliver it safely and effectively to the brain. This trial, and other like it from other companies, are considered Stage 2/3 Clinical Trials, which means they enroll more than 1000 people across dozens of sites in multiple countries, using a random assignment to either a placebo or, in this study, one of several different doses of the investigational drug. The goal, basically is to see the safest dose at the lowest effective level.

Here's a link to the Home Page for the Early Trial: https://www.earlytrial.com/ It will show you the locations and has a contact info. Or, if you'd like, you can let us know what city you're nearest to, and we can check to see if they have a study location.
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Re: Would like to be contributor to a study.

Post by NF52 »

Fc1345linville wrote: If you are at least 80 yrs old and are a 3/4 in good cognitive health, you too should read about and consider joining this study.

As a male, 4/4, 75 year old, I found out about this study from our own KatieS about a year ago and went through testing at Stanford in March, 2016. I live on the East coast, but Stanford paid for my airfare and hotel for two nights. The actual tests (see link) took one full day and a half of the next day. As for the cognitive tests, if you're like me, you always want to "get 'em all right", but they are trying to test our limits, so we usually don't. They were interesting, challenging and sometimes fun. No problems with the blood draw or MRI.

Last week I went out to Stanford again, for followup testing, and again found it to be an interesting process. Dr. Michael Greicius, who is in charge of the study, and his staff are all very professional and take good care of you during your stay. The primary goal of the study is to identify "genetic factors that are protective against the development of Alzheimer's Disease."

If you have not visited the San Francisco Bay area, or even if you have, and you think you qualify for this study, I urge you to contact Stanford for more information. They are looking for new participant volunteers.

http://lilyhyunkim.wixsite.com/apoe4study
Here's one more study to consider: "FC" one of our members, has just finished the third visit to San Francisco from his home near Washington, D.C.--all expenses paid--to have some imaging scans of his brain and a day and a half of testing. This study is looking to identify the secret ingredients you healthy 80 year olds have, so we can give it to others! You have said you don't know if you have an Apoe 4 gene, but I am guessing that they would be more than willing to help you get the answer to that to see if you qualify,

Hope one of these is helpful, and that you keep us posted on how you are doing. Your siblings have been, and continue to be lucky that you are optimistic about what life offers, and what you can offer back!

Hugs from a "mere" 65 year old !
4/4 and still an optimist!
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