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anyone else dealing with genetic Alzheimers?

Discussion in 'Younger people with dementia and their carers' started by Suzanna, Apr 26, 2008.

  1. Suzanna

    Suzanna Registered User

    Dec 5, 2007
    55
    Manchester/London
    i think this is a question that i have put to the forum before to no avail however i thought maybe some new people may have joined since then!?

    we have the genetic form of early-onset Alzheimers in my family and would love to hear from anyone in the same (often sinking!) boat...!

    Suzanna
     
  2. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Sorry
    I can't be of help Suzanna but I would like to ask you a few qustions regarding Genetic AZ. How was the diganosis made?

    I presume that there must be some incidence of AZ in your family tree which has caused doctors to diagnose that there is an inherited gene responsible but are there any tests which you all have to take? If so does this identify who has the gene and who hasn't? If it is known that a specific gene predisposes someone to develop AZ, then I wonder if this can give a ray of hope for all suffers of AZ?

    I find this interesting and would like to learn more about this particular form as my husband had an aunt who was diagnosed with 'mental health' problems when in her early 40's. AZ was never mentioned but I wonder if there is a connection between this auntie's illness and my husbands LBD?

    xxTinaT
     
  3. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Hi Tina

    Do you think Lewy bodies is inherited ?
    Love BarbX
     
  4. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    No I don't Barb. The problem is Ken's aunty was never diagnosed with anything. In those days, some 30 years ago, there was such a stigma attached to mental health that everything was hushed up.

    Lewy Body disease as far as I know affects 2 separate parts of the brain. The deep brain which is connected to movement and spatial awareness and has links with parkinson's disease, is one area. The other area is high up frontal lobe area and is connected to memory, speech and language. This is why our husbands have a 'double whammy'. I'm not sure which pat of the brain causes the hallucinations.

    The disease is called Lewy Body Disease because of Doctor Lewy who examined brains after people had died and found small, white fatty deposits which blocked the neuron transmissions.

    Depending on which symptoms are strongest, it is sometimes called parkinsons with Lewy Body, and one of the brain areas can be affected more than the other.

    LBD does affect people at a younger age than some other dementia problems. It also shows itself in an inability to do such things as clean your teeth. The person can recognise a toothbrush, even give it a name,but cannot perform the actions that have to be done with a toothbrush. They can name slippers but cannot put the left one on the left foot or vice versa.

    Another common symptom is to 'see' things on the floor which are not there and try to pick them up, often resulting in falls as balance is also very affected. Hallucinations are also very common and some medications can make the hallucinations worse and have serious side effects. Haloperidol is a drug which is particularly dangerous for LBD sufferers. 90% of the men on Ken's hospital ward had LBD because it also produces very disturbed and hard to handle, violent behaviour problems. Ken's Consultant said that it was one of the types of dementia which is the most difficult to cope with.

    There are some good websites if you type in Lewy Body disease into the search engine. A lot of the info is very technical but worth while struggling through.

    xxTinaT

    xxTinaT
     
  5. Suzanna

    Suzanna Registered User

    Dec 5, 2007
    55
    Manchester/London
    Hi Tina,

    I will try and answer some of your questions (from my grasp on the whole thing!)
    In terms of my family history, we are only aware that my Mum and her Mum had/have AD, we don't know any further back.
    I'm not sure if they decided to go down the genetic investigation route on that basis alone or because both my Grandma and my Mum were young when they started to develop it (60ish and 56ish respectively). Either way, they took a blood sample from Mum (i had know idea of this...) and tested it.
    I believe there are only a few genes that can be identified as causing AD so the chances of them being able to say if it was genetic either way was slim (which may be another reason why they rarely check).
    Anyway, they have found one of the 'few genes' in my Mum.
    It is indeed a gene that they can test me and my siblings for and if we were to prove to be 'positive' so to speak then it means that we will go on to develop AD at some point (probably around our late 50's). - there is a 50:50 chance that we will have inherited THE gene...
    As for this being of potential use in terms of finding treatments i'm not really sure. I had an appointment with some consultant or other a few months back and he was talking about a treatment that may be able to prevent the breakdown of some protein or other (does that sound technical!!?).
    Either way i think it is just a case of fingers crossed (especially for people like me who know that they are likely to be a future suffer!). When i finish my degree - only 5 weeks to go!! - i will look into joining a research project that my older sister is involved in to try and shed some light on the whole thing and am considering having the test done to find out if i have THE gene.

    i hope this has been of some help,

    Suzanna
     
  6. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Hello Suzanna,

    Many thanks for your most clear explaination which has answered all my questions.

    I hope very much that you haven't got the AZ gene and I think you are very brave to go ahead and continue the research aspect. Who knows what this research might develop into. The best scenario is that it will help to lead to a cure. Wouldn't that be wonderful!!

    The people who are morally against stem cell research should sit in our shoes for a week or two!! Of course we have to have ethical research - a debate on the radio a few weeks ago convinced me that stem cell research was completely ethical and the very best way forward in finding a cure for this disease.

    xxTinaT
     
  7. Dgirl

    Dgirl Registered User

    Sep 6, 2007
    16
    Dublin, Ireland
    Don't know if this helps or not. We got Mum on a drug trial in Ireland. While she was on it Dad got talking to the specialist running it. Turns out they hope to have a vacine for AD in about 10 years. It won't cure it but will stop it in its tracks so if caught early it means there is hope
     
  8. sarah<3

    sarah<3 Registered User

    Apr 12, 2008
    24
    Essex
    alzheimers might be genetic in our family
    my gran died of it when i was 6
    now my aunty has it (her daughter)
    my dad (her son) was talking to me about how it could be genetic, and so he could get it when hes older
    though it might just be coincidence
    me and my mum talked about how you could be tested to see if your more likely to get alzheimers, but maybe its better not knowing, so you dont live your life worrying about it?
    hope this may of helped? :confused:
    xxxxxxxxx
     
  9. salacious

    salacious Registered User

    May 25, 2008
    62
    west midlands
    yes

    hi there, my mother has alzheimers, she started having the symptoms at 38, she is now 44 and very nearly at the end of her life. her father, my grandfather, also had it early and died aged 54. so yes to say it scares the c**p out of me is an understatement. people keep asking me if i want the test, but i dont think i do!!
    its not exactly like someone can make the decision for you... although i wish they would sometimes...

    much love sara
     
  10. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    And, maybe, it is better to have the test so you do not worry about it ?
    Barb & Ron
     
  11. salacious

    salacious Registered User

    May 25, 2008
    62
    west midlands
    well barb i have to say that it is a hard decision, if you find out u do have it you could react in two ways. 1. you could say well thats life and try and enjoy the rest of it to the full or 2. you could think about it constantly, worrying when it is going to happen, and wondering if u will know when it has started. plus i have a boyfriend, and in all honesty as much as we love eachother very much i wouldnt want him to see me deteriorate like that, plus then you have to think about whether you want to risk having children. it is a hard decision.
     
  12. margaret101

    margaret101 Registered User

    Jul 17, 2008
    56
    clacton on sea
    Genetic Alzheimers

    Yes we have Genetic Alzhimers when my husband Bill was sent to the London Hospital theysaid he had Picks because thats what they had said his sister had 5 years before we asked for testing
    for Genetic thats when they found he had a difference strain of AZ they had never seen before
    His father had died in Claybury Hospital we didnot know he had AZ untill Katy and Bill


    margaret
     

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