1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

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

Discussion in 'Recently diagnosed and early stages of dementia' started by AppleTree31, Jul 11, 2015.

  1. AppleTree31

    AppleTree31 Registered User

    Jul 7, 2015
    1
    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.............:confused:
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,586
    Kent
    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

     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,548
    Female
    South coast
    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.
     
  4. cragmaid

    cragmaid Registered User

    Oct 18, 2010
    7,963
    North East England
    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.:)
     
  5. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    333
    rct
    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
     
  6. patsy56

    patsy56 Registered User

    Jan 14, 2015
    840
    Fife Scotland
    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
     
  7. Chemmy

    Chemmy Registered User

    Nov 7, 2011
    7,592
    Yorkshire
    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. :)
     
  8. madusmacus

    madusmacus Registered User

    Nov 6, 2015
    1
    #8 madusmacus, Nov 6, 2015
    Last edited: Nov 6, 2015
    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
     

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