Hi,

My name is Lol, this is my first post. My mother had alzheimer's beginning at about age 57, maybe earlier. Of her 7 sibs, 5 have all died from it, with age of onset between 48 and 57. Now my sister has it and has had genetic testing confirming Familial Early Onset. She is 56, but started showing signs at 51.
I am 46, have two sons, age 14 and 10 and want to do something! There are 13 of us in my family, and now we know we have a 50/50 chance of getting this, and passing it on to our kids.
I would like to 'talk' to anyone who participates in research. I am not sure whether I want to know if I have the gene, but from what I've read, pre-symptomatic carriers may provide more answers for research.
I'm also concerned about consequences of genetic testing to getting insurance and employment.
Also, I'd like to know what kind of early symptoms people have experienced. I remember with my mom, she had parkinson's like symptoms and had actually been diagnosed with parkinson's before she had obvious memory problems. Those symptoms just disappeared after about a year.

Hi LOL! I thought you would find this interesting as far as predicting EOAD, latest research and also some info on Mayo. I'm not sure where you are located but they do a lot of cutting edge Alzheimers research. They have three sites, Scottsdale AZ, Jacksonville, Fl and Rochester, MN.

My maternal grandmother suffers from AD and her sister died from it. My paternal grandfather had vascular dementia and probably AD too so I too will be heading for early eval.

http://discoverysedge.mayo.edu/alzheimers_disease/index.cfm

Hi Lol!
I have been debating the same thing. My mother has AD and which makes 7 out of 9 in her family that has/had it. I am going to family doc next week to discuss as I am only 55 and have begun to have some issues that are concerning me. I saw online a test that you can take. Still debating about that. I would be interested to know what you decide to do.
SherryLR

Hi and thanks for your replies. I am in the Boston area and have access to a lot of cutting edge researchers in the area. I have not made a decision yet. I did contact a researcher via email and actually got an almost immediate response. They want to know the exact gene mutation that my sister has and her family doesn't know. I have been waiting for that info.

Also, my sister's doctor is interested in discussing the genetic results and possible steps with my whole family but that has not happened yet.

Part of me wants to know so I can plan and live life accordingly either way (more vacations if I have it, more retirement savings if I don't!). I worry everytime I'm forgetful, which is a lot more lately. With menopause setting in and a very demanding job and family, I guess it's normal to have some memory problems, but still, it's scary. My husband is afraid if I find out I have it, I will get deeply depressed and will set off the symptoms.

I do want to participate in research as long as my privacy is promised and I can choose whether to find out whether I have the genetic mutation or not. I really want to put an end to this terrible disease that has taken so many in my family. I want to end this before my kids or my neices and nephews have to face the possibility, if not myself and all my sibs!

I have heard that even though I cannot be denied insurance if I have the gene and it goes on my medical record, that my insurance cost will go up. I don't know if that is true, but it is information my neice and nephew heard from an expert a few weeks ago.

Sherry, don't bother with the on-line test. From what I have read, it isn't conclusive and doesn't test the genes that cause early onset familial alzheimer's (assuming that is the type in your family).

Thanks for the link, I will check it out...