I have just been told I have the APOH 4 gene which means that I am 100% likely to bec

[AppleTree31]

Hi all,
My mother and 3 of her 5 sisters had Alzheimer's, their own mother had it too. .I looked after my mother for several years before my own cancer battles, M.E, Fibro etc etc became too much for me to look after her. She went into a very nice retirement home with her own flat etc. A bit expensive but it was very good, we had to sell the house and I was made homeless!! to pay for her care. Anyway I am 64 and was asked to take part in genetic research. The results of this research is that I have 4 out of 4 markers meaning 100% likely to get Alzheimer's........ I dreaded but kind of Knew this would be the outcome. They advised me to tell my family and friends, to warn them. But I have no friends (no really) and just one brother and he is a high functioning Aspergers sufferer. What to do, what to do.............

 

[Grannie G]

Hello AppleTree

What a devastating result for you. You will need to be very strong minded to be able to continue to live a good life without being affected by this result.

You are still relatively young and I sincerely hope you do not have any symptoms yet nor will for a long time.

What to do? What can you do other than try to live your life as well as you can under the circumstances.

I suppose a consultation with your GP might help if you discuss the results with him/her and ask him/her to monitor you with regular check ups.

When my mother was diagnosed we shared the same GP. He said he would keep a check on me . It didn`t happen because I moved from the area but something like this might help you.

If you have no family or friends to support you I`m glad you have found Talking Point. You will be well supported here.

There is also the National Dementia helpline which you can contact if ever you need additional professional support.

http://forum.alzheimers.org.uk/faq.php?faq=resources#faq_resources_helpline

You can contact our helpline by calling 0300 222 1122 or by email at helpline@alzheimers.org.uk.

The helpline is usually open from 9am to 5pm Monday to Friday, and from 10am - 4pm at weekends. However, the service may be closed occasionally during these times for operational reasons.

 

[canary]

Oh how awful. Mum has Alzheimers and it is something I would truly dread.
Having said that you may go on for many years before problems.

In addition to Granny Gs advice I think I would get my affairs in order now. I am going to get POA sorted and might suggest that you do that and also think about a living will.

 

[cragmaid]

Live for the now and prepare for the future.......and remember that just because you have the gene it does not mean that it will definitely become active.

 

[henfenywfach]

Hi all,
My mother and 3 of her 5 sisters had Alzheimer's, their own mother had it too. .I looked after my mother for several years before my own cancer battles, M.E, Fibro etc etc became too much for me to look after her. She went into a very nice retirement home with her own flat etc. A bit expensive but it was very good, we had to sell the house and I was made homeless!! to pay for her care. Anyway I am 64 and was asked to take part in genetic research. The results of this research is that I have 4 out of 4 markers meaning 100% likely to get Alzheimer's........ I dreaded but kind of Knew this would be the outcome. They advised me to tell my family and friends, to warn them. But I have no friends (no really) and just one brother and he is a high functioning Aspergers sufferer. What to do, what to do.............

Hi!
Firstly youve shown humongous courage by going for these test.
I suppose when your mind suspects genetically that your likely to get the disease..and you then get fact and odds..im sure you felt clarity.
I feel for you for the fact that youve been through what sounds like you have a very hard few years.

We all deal with things differently..and youve shown such great courage..now is your time to focus on you and make the most of your life..i say this to everyone in good health or ill health.

In relation to friends..i have friend ive known for thirty years ..and still i need talking point..as they really dont understand..how being a carer and dementia affects you..they try but its just too difficult for them without personal experience.
In some ways your better off...because they come to me for advice and help as i get what their going through instantly..like ive got a carers magnet for situations without asking questions.
You might feel like joining something..and quite frankly to meet people that feel the same is a relief.
Try local carers projects..

It easy for us to say to put it to the back of your mind..but once youve put things in order for the future...dont worry about the disease let it worry about you.
Keep typing we are always reading...and make your life matter...

Best wishes

Sent from my GT-I9505 using Talking Point mobile app

 

[patsy56]

oh Apple, welcome to TP but how frightening for you. All I can say is take care. I suppose we all think if one of the family go down that route am I next? It is a horris thought

 

[Chemmy]

Gosh, this is a hard topic to respond to. However, I did want to applaud your decision to put yourself forward for such important genetic research. Without people like you, possible treatment would be even further away. Were you not offered counselling after being given the result?

As the others have said, I guess the best strategy is carpe diem , seize the day. I often wonder if too many of us spend too much time looking back regretfully or looking forward anxiously when we would be better concentrating on enjoying the here and now. None of us know for sure whether we will still be here next week, next month or in twenty years time, so try not to worry too much about the future.

 

[madusmacus]

Hi all,
My mother and 3 of her 5 sisters had Alzheimer's, their own mother had it too. .I looked after my mother for several years before my own cancer battles, M.E, Fibro etc etc became too much for me to look after her. She went into a very nice retirement home with her own flat etc. A bit expensive but it was very good, we had to sell the house and I was made homeless!! to pay for her care. Anyway I am 64 and was asked to take part in genetic research. The results of this research is that I have 4 out of 4 markers meaning 100% likely to get Alzheimer's........ I dreaded but kind of Knew this would be the outcome. They advised me to tell my family and friends, to warn them. But I have no friends (no really) and just one brother and he is a high functioning Aspergers sufferer. What to do, what to do.............

I just had 23andme check my markers
one copy of the APOE ε3 variant and
one copy of the ε4 variant (Genotype: ε3/ε4).
The ε4 variant is associated with higher risk for developing Alzheimer's disease
3/4 gives me 22.6%

Table 2. 23andMe APOE genotype frequencies
Genotype European Ancestry - African-American Ancestry - East-Asian Ancestry
ε2/ε2 - 0.4% ---- 0.9% -- 0.5%
ε2/ε3 - 11.9% - 14.3% - 11.6%
ε3/ε3 - 60.9% - 47.7% - 68.0%
ε2/ε4 - 2.1% ---- 2.3% -- 1.5%
ε3/ε4 - 22.6% - 28.0% - 17.3%
ε4/ε4 - 2.0% ---- 4.8% -- 1.2%

I didn't know there was 4 markers but im a Newbie to all this
I guess im asking, is there is really 4 markers I should be looking for.
Meaning my results are suspect

Sorry for the question