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CHAT Title Amendment: Alzheimer's Disease: Would You wanna know? watch

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    (Original post by JnA)
    if you knew you were going to suffer from alzhmeirs later on, whyshould this make you willing to live your life to the fullest? You should do that ne way right ?

    dont think I would wanna know, I may even die before I suffer from it...then itd be unecessary extra worrying on my behalf. This deisease is not curable is it, so maybe that too would deter me from knowing my fate.
    I see (and agree with the sentiment of) what your saying, but will add this:

    Because it would stop you getting caught up in the material things that aren't really important. SAy if you planned to retire and travel the world. If I thought I was going to die early, I'd phook the job and do it now!
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    (Original post by tis_me_lord)
    I'd want to know so i can go and lose my virginity, screw those around me! (Literally.)
    :eek: :eek: :eek: :eek:

    I'd want to know so I can do something to prevent it - I dunno, play chess all day or something! Take long walks in the fresh air! Anything, I'd be desparate to change my fate.
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    hmm...people keep saing that they would want to know as then they could ensure they lived life to the full but could you really live life to the full having that weight on your shoulders?! knowing what a struggle lay ahead?! worrying about it all the time?!
    ana xxx
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    I'd prefer not to know because I wouldn't like it hanging over me and I live my life a bit recklessly at the moment any way.
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    (Original post by amazingtrade)
    I wouldn't want to know because I would be worried about it all my life.

    My point exactly
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    My mum has Huntingdon's Chorea, it's a late onset muscle wasting disease that's hereditary - children have a 50% chance of inheriting it, which means my sister and I may also end up with it at some point. We can take a test to find out if we have the gene, but so far neither of us has chosen to do so.

    I'd quite like to take it, as I think like most of you I'd rather know if something was going to happen to me, but my sister who's 10 years older is less keen - I think it worries her a lot more as she may get it relatively soon within the next 10 years or so and there's so much she wants to achieve yet; marriage, kids etc.

    We've both seen Mum go from the early stages of being able to walk albeit with aid from when I was about 12 years old to her present state 10 years on, where she's unable to speak coherently and can't control her muscle movements. She had to move into a home a year and a half ago because we couldn't cope looking after her at home anymore. It's a painful slow process and it's not nice seeing a relative go through it, much less knowing you could be in the same position one day.

    it impacts on relationships aswell, it's a big thing to trust that someone will be able to cope with it. I've got a wonderful boyfriend at the moment who I've been seeing for 5 years, but I still wouldn't blame him if he choose to leave me in the future because I had Huntingdon's.

    I only want to take the test if my sister does too because I don't believe it's fair that one of us knows and one doesn't, so at the moment it's a stand off.

    Anyway, just my two cents, sorry for the monologue.
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    (Original post by Liverbird)
    My mum has Huntingdon's Chorea, it's a late onset muscle wasting disease that's hereditary - children have a 50% chance of inheriting it, which means my sister and I may also end up with it at some point. We can take a test to find out if we have the gene, but so far neither of us has chosen to do so.
    Oh that's terrible! We'd only looked at it as theory in biology.

    Sad thing is the chance is that one of you will have it. Also it's dominant gene as you say... would you have kids? Would it be morally right? I think you'd want the test before becoming a biological parent.

    Good luck (if you're telling the truth, there's always a chance of lies on these forums) and I wish you both all the best if you go ahead with the test. Think... it would either clear you of worry, or it would let you try and make the most of your life in the time you have.
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    (Original post by Liverbird)
    My mum has Huntingdon's Chorea, it's a late onset muscle wasting disease that's hereditary - children have a 50% chance of inheriting it, which means my sister and I may also end up with it at some point. We can take a test to find out if we have the gene, but so far neither of us has chosen to do so.

    I'd quite like to take it, as I think like most of you I'd rather know if something was going to happen to me, but my sister who's 10 years older is less keen - I think it worries her a lot more as she may get it relatively soon within the next 10 years or so and there's so much she wants to achieve yet; marriage, kids etc.

    We've both seen Mum go from the early stages of being able to walk albeit with aid from when I was about 12 years old to her present state 10 years on, where she's unable to speak coherently and can't control her muscle movements. She had to move into a home a year and a half ago because we couldn't cope looking after her at home anymore. It's a painful slow process and it's not nice seeing a relative go through it, much less knowing you could be in the same position one day.

    it impacts on relationships aswell, it's a big thing to trust that someone will be able to cope with it. I've got a wonderful boyfriend at the moment who I've been seeing for 5 years, but I still wouldn't blame him if he choose to leave me in the future because I had Huntingdon's.

    I only want to take the test if my sister does too because I don't believe it's fair that one of us knows and one doesn't, so at the moment it's a stand off.

    Anyway, just my two cents, sorry for the monologue.

    I dont know what to say, im sorry Hope you and ur sis dont get it
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    sorry liverbird

    my grandad had picks disease (a form of dementia, v simular to alziemas but affects personality before memorey). It was horrible to see him turning into someone we didnt know. But when i found out about it being herreditory (50% likely hood) at first i was really angry at my mum for not telling me, it seemed such a major thing that cud affect not only me but my mum, aunties, uncles, brother and cousins, i was reallly mad that theyd kept it from me.
    Now however, i wish i could go back to not knowing. sometimes i get angry with my brother as hes so blissfully unaware, he doesnt have to cope with knowing. its not just that i could have it, but my mum (who should start showing signs soon) her brothers and sisiter, my brother and my cousins.
    theres no test , so i could pass it on to my children as i wont know if i have it when im at child baring age. theres no cure.
    its scary.

    i really wish i didnt know.
    but when you have to know, you just have to try and put it to the back of your mind and live each day as well as you can.

    sorry for the long rant.

    ana xxx
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    Not neccessarily, it's 50% chance for both of us, so we may be lucky and neither get it.

    Question of kids affects my sister more than me at the moment (I'm going to Uni, what do I want with kids!!) but we both went to a counselling session thing at the Genetics Centre and apparantly there's a separate test which reveals the chances of your unborn child having the gene or not without you knowing whether you have it yourself, at least I think that's right.

    It's all still kind of surreal despite having known about the implications for ages. Like I said, I'm not keen on having the test without my sister which is partly why I haven't had it yet. It's partly also that there's a small grey area of results where they can't be sure whether you have the gene or not when they do the testing, which puts me off because it would be worse having the test and still not knowing for sure! Also, there might be quite possibly be a treatment or cure developed in the next 20 years before it has chance of affecting me. So I'm quite happy to take the ignorance approach at the moment.

    Thanks for the support
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    (Original post by anaïs)
    sorry liverbird

    my grandad had picks disease (a form of dementia, v simular to alziemas but affects personality before memorey). It was horrible to see him turning into someone we didnt know. But when i found out about it being herreditory (50% likely hood) at first i was really angry at my mum for not telling me, it seemed such a major thing that cud affect not only me but my mum, aunties, uncles, brother and cousins, i was reallly mad that theyd kept it from me.
    Now however, i wish i could go back to not knowing. sometimes i get angry with my brother as hes so blissfully unaware, he doesnt have to cope with knowing. its not just that i could have it, but my mum (who should start showing signs soon) her brothers and sisiter, my brother and my cousins.
    theres no test , so i could pass it on to my children as i wont know if i have it when im at child baring age. theres no cure.
    its scary.

    i really wish i didnt know.
    but when you have to know, you just have to try and put it to the back of your mind and live each day as well as you can.

    sorry for the long rant.

    ana xxx
    It's certainly scary. I agree on the not knowing, life was so much simpler before! :rolleyes: But on the other hand, if I didn't know I suppose I wouldn't be the person I am now. (Not that's necessarily a good thing! :confused: )

    Anyway I'm rambling...Seriously, I know how hard it is. I hope none of your family get it.
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    (Original post by Liverbird)
    My mum has Huntingdon's Chorea, it's a late onset muscle wasting disease that's hereditary - children have a 50% chance of inheriting it, which means my sister and I may also end up with it at some point. We can take a test to find out if we have the gene, but so far neither of us has chosen to do so.

    I'd quite like to take it, as I think like most of you I'd rather know if something was going to happen to me, but my sister who's 10 years older is less keen - I think it worries her a lot more as she may get it relatively soon within the next 10 years or so and there's so much she wants to achieve yet; marriage, kids etc.

    We've both seen Mum go from the early stages of being able to walk albeit with aid from when I was about 12 years old to her present state 10 years on, where she's unable to speak coherently and can't control her muscle movements. She had to move into a home a year and a half ago because we couldn't cope looking after her at home anymore. It's a painful slow process and it's not nice seeing a relative go through it, much less knowing you could be in the same position one day.

    it impacts on relationships aswell, it's a big thing to trust that someone will be able to cope with it. I've got a wonderful boyfriend at the moment who I've been seeing for 5 years, but I still wouldn't blame him if he choose to leave me in the future because I had Huntingdon's.

    I only want to take the test if my sister does too because I don't believe it's fair that one of us knows and one doesn't, so at the moment it's a stand off.

    Anyway, just my two cents, sorry for the monologue.
    sorry to hear that. You are a very brave bod! It's good you have sibs that you can share things with equally.

    Isn't HC a disease marked by penetrance? Even if you are unlucky enough to have inherited it, you may not show the symptoms yourself (although of course you could still pass on a high penetrant form to any off spring).

    Anyway, my heart is with you (and your sister).

    Best

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    (Original post by Liverbird)
    it impacts on relationships aswell, it's a big thing to trust that someone will be able to cope with it. I've got a wonderful boyfriend at the moment who I've been seeing for 5 years, but I still wouldn't blame him if he choose to leave me in the future because I had Huntingdon's.
    I'm the boyfriend and i'm going nowhere.
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    (Original post by The Enforcer)
    I'm the boyfriend and i'm going nowhere.
    Good - else the secret UKL soc might hunt you down - it wouldn't be pritty

    Only joshing! Hello
 
 
 
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