My husband has FTD. If hindsight is worth anything I think he started showing symptoms as early as when he was in his 40's. His brother commited suicide at age 44 and it is possible that he was diagnosed at an early age and couldn't live with it-but that is just a guess. My son is an engineer and his wife an MD. I asked them if they would be interested in genetic testing and son's reply was-I will if you want me to-but I don't want to know the results. We didn't do it. Have any of you had experience with this issue.
Someone mentioned this on some other thread - Beware of genetic testing because no matter what anyone tells you - there is no such thing as privacy. Once insurance companies and potential employers get ahold of genetic information, the potential for abuse is staggering.
I would have to look deep to find this, but I believe somewhere in one of the new Alzheimer's Reports, there is a provision to provide absolute secrecy and privacy for genetic testing. I still don't believe privacy is possible in this cyber age. Just my opinion.
Sid does have the APOE4 gene, but I haven't brought up the issue of testing to our son.
Joan-don't answer if you're not comfortable-but I would be interested in why you haven't brought up the issue. I'm kind of leery about posting after our last "issue". I am not questioning your choice.
Lots of personal reasons, but one of them is logistical. I don't want to do it over the phone, and we haven't been together in person long enough since I found out about the gene, to discuss it with him face to face. Maybe next time we go out to SF.
I remember a few years ago on Oprah or Dr Phil they had 4 sisters from New England. One had been diagnosed with early familial AD and the others wanted to know if they would be next. They ran MRI's all of them and three showed 'hot spots' which was said to indicate they would. They wanted to know so they could have everything in order and prepared for their families in case they did develop it. I am sure these women received additional counseling - or I would think they would need it. I mentioned it to my BIL but he doesn't want to know (no one has been tested in the family).
So I think it is a very individual decision. And if they decide, as with any genetic testing, needs counseling first.
We all have our reasons, but I don't see any upside for genetic testing. Joan is right, there is no privacy & such info could influence your job, getting other ins & even relationships. There are no absolutes anyway. You could test positive for the 'possibility' that you might get AD, but that does not mean you will absolutely get it, just spend the rest of your life in panic every time you lost your keys. Since there is no known prevention, what could you do? People say it's best to get your things in order--but you should do that anyway. I have no idea why DH got AD, I don't think he had the APOE4 gene, but we never looked for it. Most AD sufferers do not have the gene, anyway. One doc wanted testing for Huntington's, but I refused, I knew he didn't have that & to what avail? I would never ask my children to get tested--unless there was a way to prevent it. But, of course, to each his own.
Bluedaze, I now realize my DH had vague symptoms for decades before the significant bizarre behaviors came roaring out, I just didn't recognize them as part of a brain disease--he seemed so perfectly normal. I think most people will agree that 'something' was wrong for a long, long time before diagnosis. Such an elusive, evil thing.
Bettyhere-I have this vain, stupid hope that if those with the gene were identified and started on a useless drug like aricept it might stabilize them until "The Cure" arrives. Years ago I was working on peds in Philly. Babies were too often brought with staph pneumonia and they all died. A new anti biotic class was developed and we never lost another baby. The same thing with insulin-one day DM was terminal and the next treatable.
Bettyhere--I've only heard one reason that makes sense to me for testing. For families with the EFAD gene, if this is known in advance, it is possible to eliminate passing the gene on through specific fertility procedures. Otherwise, I agree that testing doesn't give you a leg up--as you said, everyone should get their things in order, etc.
MarilyninMD: Absolutely, testing is almost mandatory if you are planning on having a family, absolutely. It would be good for a lot of devilish things we pass on. I always thought it was likely a recessive gene with my DH and I wish more research was done on our DNA to help eliminate all sorts of things.
Bluedaze, again, absolutely, if we could give someone a med to stabalize them, it would be well worth it. That day will not come soon enough. I do believe that penicilin helped my little ones, today they are adults & I am allergic to that drug, and I don't normally get allergies. However, there are, fortunately, other options now. There is no vain & stupid hope for a 'cure,' the day will come, sadly not for us, but it will come.
Joan, it was Dr. Rachelle Doody - from Baylor College of Medicine, who stands firm against DH's children being tested,. She was the one who said that at this time, it could compromise insurance applications, employment and a plethera of other issues.
I suppose she has seen the bad side of this issue, but for professional reasons could say no more. I want to believe that by the time our children are in their 50's and 60's, our researchers will have more effective drugs to control this ugly disease.
I remember when AIDS was a death sentence. Now people have lived 20 plus years with the virus, thanks to a drug cocktail that controls the virus. Now it's OUR turn, Research people. Help our people.
Genetic testing is like trying to guess the future... I am facing the same concerns...This is a third generation for me... My wife's grandmother had alz, my wife's mother had alz (and ironically my wife cared for her in our home for 4 years), now my wife has eaod at 55. My daughter is next in line for this prize, along with my two year old grandaughter. Logic tells me that testing would only confirm what we already suspect. I would rather not assume that the gene testing will indicate the certainty of the disease. It is like trying to look into the future, without any means of avoiding the diagnosis. I can only insist that they take daily ibuprophen, drink plenty of coconut juice, and sneak an occasional namenda tablet when no one notices. I would hate to think that my 2 yr old grandaughter would know for sure that she would get the eoad...Not knowing for sure gives you the hope that maybe this plague will pass her by/// And also, the other issues mentioned..insurance, employment, marriage, childbearing would cause further problems. I agree that more research is needed. The brain is the most complex and least understood organ of the body, and when the cpu develops problems, it is hard to fix. I look forward to the day of memory chip implants, and being able to install another brain processor....I woul welcome the opportunity to become the world's first successful brain transplant, but I wonder if I would still be me, or would I become the donor..... I think these posts are great because together, we may find common similiarites and narrow down the potential cause of ad before it claims another victim
My DH is in the Elan study and they found that he has the APOE4 gene. One daughter told me she would not want to know. My kids are in their 40's and I feel nothing would be served by suggesting genetic testing. I do hope that there will be breakthroughs soon so that if they get AD it can be treated.
phranque said "The brain is the most complex and least understood organ of the body".
I remember reading many years ago in "Omni" magazine (that tells you how long ago): "If the brain were simple enough that we could understand it, we would be simple enough that we couldn't".
There is a place for genetic testing, but at this time, I think not for many with Alz. If the testing was definitive enough that the results were Yes you have it or No you don't that's one thing, but when it says you have a gene that makes your risk of developing ... higher, that's still no answer and can be perilous trying to get insurance, a job, deciding to have a family. A crap shoot.
I'm lucky. My handicap has several variations for which genetic errors have been Identfied. My particular Variation, CMT 1B is autosomal dominant. That means on a certain pair of chromosomes, if there is a certain error on one, the person has CMT 1B. If not they don't. The chances of passing it on are 50/50. The error is a point mutation. Easiest explanation is: 4 components in varying combinations are then strung together to create a certain protein string that forms the myelin around the nerve (like the coating on an electrical cord). In one of the clusters of 4, there is an error: instead of AGCT for example, there is ATCT. Bottom line, it's like a type O. With the error the myelin doesn't do it's insulating job properly and the nerves can't do theirs as a result.
Why am I lucky. I have the error. No one else in the family does--including my daughter. When genetic testing can give that kind of answer, it is worth it.