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  1. #1
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    Familial Alzheimers

    Hello.

    Familial Alzheimers - my daughter aged 33 possibly started already but has had blood test and has her father's gene. How to tell my son? Left it late, he is 30 now but I have know about this for 20 years. Does anyone have any advice?
    Last edited by Izzy; 20-11-2016 at 04:50 PM.

  2. #2
    Volunteer Moderator Izzy's Avatar
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    Hello Vara and welcome to TP.

    I'm so sorry to read about your situation. I have no experience of this myself but I hope some other members who do will post soon.
    Izzy
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  3. #3
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    How about contacting Rare Dementia Support who run the fAD support group linked to UCL? See http://www.raredementiasupport.org/ and https://www.ucl.ac.uk/drc

  4. #4
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    Personally, but depending on his temperament, I would tell him and encourage him to be tested.
    You don't say whether or not he has any children or is in a relationship, this could make it a more difficult decision.

    We had a similar problem in that my wife had the gene for dystrophia myotonica which fortunately never developed, we told our 3 children before they were married, they were tested and found to be clear.

    Have a read through
    https://www.alzheimers.org.uk/site/s...documentID=168 which includes
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  5. #5
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    How about contacting Rare Dementia Support who run the fAD support group linked to UCL?
    Thank you very much, I didn't know this website existed, I am looking into it.
    Last edited by Izzy; 20-11-2016 at 06:34 PM. Reason: Quote link fixed

  6. #6
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    [QUOTE=nitram;1348098]Personally, but depending on his temperament, I would tell him and encourage him to be tested.
    You don't say whether or not he has any children or is in a relationship, this could make it a more difficult decision.

    We had a similar problem in that my wife had the gene for dystrophia myotonica which fortunately never developed, we told our 3 children before they were married, they were tested and found to be clear.


    Yes it is a 50:50 chance he will develop it. He doesn't have children but is in a fairly new serious relationship. I feel I must tell him now but worry I have left it quite late, it was to protect him. I wondered if anyone else has been through this and could give me advice on how to break the news to him.

  7. #7
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    When is the question?

    Quote Originally Posted by Izzy View Post
    Hello Vara and welcome to TP.

    I'm so sorry to read about your situation. I have no experience of this myself but I hope some other members who do will post soon.
    My mom passed earlier this year. After indepth investigation, I uncovered that her twin brother had famelial Picks Disease and sister and mother too died of this early onset rare frontotemporal dementia.

    I am looking to get tested myself. My husband and I have 12 year old twins.
    After much deliberation, I have decided that I need to know for myself as I am 42 now, and still have a way to go before our boys become independent. I am not going to test my children as this will completely devastate me knowing their fate at such a blossoming time of their lives. I choose to rather keep my eye on them from a distance as they become young men and be subtly aware of behaviour changes that may signal early onset. I will only tell them if I suspect, test and know for sure. Because once you know it is the end of the world as you know it!

  8. #8
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    Dont tell him!

    [QUOTE=Vara;1348206]
    Quote Originally Posted by nitram View Post
    Personally, but depending on his temperament, I would tell him and encourage him to be tested.
    You don't say whether or not he has any children or is in a relationship, this could make it a more difficult decision.

    We had a similar problem in that my wife had the gene for dystrophia myotonica which fortunately never developed, we told our 3 children before they were married, they were tested and found to be clear.


    Yes it is a 50:50 chance he will develop it. He doesn't have children but is in a fairly new serious relationship. I feel I must tell him now but worry I have left it quite late, it was to protect him. I wondered if anyone else has been through this and could give me advice on how to break the news to him.

    I think your son has the right to pursue happiness. There is a reason Alzheimers Uk has placed a moratorium on insurance companies using genetic testing - because it prejudices you! Tell him on a NEED TO KNOW basis and right now he does't need to know. The symptomatic signs at the time will be the indicator to tell.

  9. #9
    Registered User BR_ANA's Avatar
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    Tell him before he had babies.

    If he had, genetic doctors can help to select spermatozoa that won't give it to babies.
    Ana - english is not my mother tongue

  10. #10
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    [QUOTE=Claire Mary;1348312]
    Quote Originally Posted by Vara View Post


    I think your son has the right to pursue happiness. There is a reason Alzheimers Uk has placed a moratorium on insurance companies using genetic testing - because it prejudices you! Tell him on a NEED TO KNOW basis and right now he does't need to know. The symptomatic signs at the time will be the indicator to tell.

    But if he gets married soon and wants children surely I would be guilty of not giving him and his girlfriend the facts. Actually the burden of keeping this from him is very heavy on me.

  11. #11
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    Quote Originally Posted by BR_ANA View Post
    Tell him before he had babies.

    If he had, genetic doctors can help to select spermatozoa that won't give it to babies.
    I didn't know this, thanks, I will look into that if necessary.

  12. #12
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    I have the familial AD gene in my family too and didn't find out until my mum became ill. Her father who had it walked out when she was little so they didn't know that he developed AD at a young age as well as many of his siblings. As a person 'at risk' I would want to know of that risk. If you contact the Rare Dementia Support they will be able to talk to you about it. From various speakers that have been at the Familial AD support group it seems that being open and honest and giving age appropriate information is the best way forward.

    I have chosen not to be tested and your son may choose not to find out if he has the gene mutation and that's okay, it has to be his choice and he can change his mind at any time. There is a little Facebook group for people that are affected by Familial Alzheimer's Disease (worldwide) that you or he might like to join too. Lots on the group, including myself, are taking part in research and drugs trials which has really helped me to focus on something positive.

    My daughter is 16 and she has known for about 5 years about my risk of getting it. She also knows that if I get it, she could too. We talk openly and honestly and she knows that she can ask me anything and I will give her an honest answer. I would much rather she came to me for information than to start googling and frighten herself and keep it all to herself. More people at risk choose not to get tested than get tested at the moment. I'm sure that would change if there were a disease modifying drug.

    My daughter sees me happily going off to London each month to take part in the drug trial, she sees me crying when I've had a post lumbar puncture headache, she sees me doing media stuff about Alzheimer's (always with her approval) and she sees me sobbing when I'm sad that other members of my family are becoming symptomatic. I want her to see all of this to show her that it's okay to be happy/sad/angry at various times. She mostly sees me getting on with normal life which is mostly what she is doing too. I'm pleased that I have managed to make something very sad and upsetting normal and okay to talk about and have feelings about.

    I wish you luck with whichever decision you make and feel free to message me if you want to chat.

    X

  13. #13
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    Thought provoking

    My mum died of dementia and I have my own worries - found this very useful, thanks for posting

  14. #14
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    Quote Originally Posted by Vara View Post
    But if he gets married soon and wants children surely I would be guilty of not giving him and his girlfriend the facts. Actually the burden of keeping this from him is very heavy on me.
    If I were in his shoes I'd appreciate it if I was told about it sooner rather than later. It may be bad news, but keeping it from him until it's too late would only make it worse. Not sure how you should break the news to him or what explanation you can give as for waiting so long, but I believe he has the right to know and should be made aware of it.
    Last edited by Theodor; 21-01-2017 at 12:45 PM.
    Smile...it's healthy for your brain.
    Exercise...it boosts circulation to your brain.
    Eat seeds, nuts, olive oil, berries, and herbal teas for a healthier brain.
    Take supplements that may support your brain health, such as B-complex, ginkgo, rhodiola rosea, and others. See mhrc.
    And don't forget to smile for it has many perks.

  15. #15
    Volunteer Host Shedrech's Avatar
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    hi Vara
    interesting info here
    I guess it's down to your knowledge of your own family
    Last edited by Shedrech; 21-01-2017 at 02:56 PM.
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