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  1. #16
    Registered User patsy56's Avatar
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    OH has Parkinson's but has been told that lewy Body setting in...that hasn't stopped him starting to get nasty and I am so tired

  2. #17
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    Quote Originally Posted by patsy56 View Post
    OH has Parkinson's but has been told that lewy Body setting in...that hasn't stopped him starting to get nasty and I am so tired
    Sorry to hear about the tiredness. I think I know what you mean. It's the having to think all the time... I thought I'd got past the stage in life (caring for kids) when I had to be ong the go and alert all the time.

    But I am so sorry your OH is nasty. That must be very upsetting. I have a new friend (through my step-mum) and she has just retired because her husband is newly diagnosed with lewy body. Reading your post has made me think to tell her about this site. (So that's one positive... even if it doesnt help you.) x

  3. #18
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    Non diagnosis

    Hi feed, I am new to TP but your issues really hit a cord with me my OH has problems but he is in total denial. The stress is unbearable as he is only 60 but I must respect his wishes not to go and find out and as I read about your frustration maybe for some going on this road peacefully for them is what has to happen yet not sure how to deal with everything.

    Sending you hugs

  4. #19
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    Quote Originally Posted by Leitch View Post
    Hi feed, I am new to TP but your issues really hit a cord with me my OH has problems but he is in total denial. The stress is unbearable as he is only 60 but I must respect his wishes not to go and find out and as I read about your frustration maybe for some going on this road peacefully for them is what has to happen yet not sure how to deal with everything.

    Sending you hugs
    I would guess that its not denial, but anosognosia - an inability to understand that there is something wrong (common in dementia). There comes a time when you have to change your mindset from going along with and enabling what they want, to persuading and enforcing what they need.
    Learning to sing in a cage

  5. #20
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    ?? Huntingtons

    Hi feeb, I was just wondering why your Neurologist queried Huntingtons. The same thing has just happened to us. My OH was diagnosed with Alzheimer's aged 50, in March. He's terrible fidgety, always has been. We recently saw a neurologist for the first time who wants to test him for Huntingtons. Which seems bizarre as there's no family history. We are doing nothing about testing at the min as the implications for our kids and family are massive, and we are only just starting to get our heads around the Alz diagnosis. So at the min it can wait. My OH is exactly the same, nothing's changed and he's fine according to him ( Everything's changed and it's not fine according to me, I don't recognise him as the man I knew &#128549 xxx

  6. #21
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    Quote Originally Posted by Pb46 View Post
    Hi feeb, I was just wondering why your Neurologist queried Huntingtons. The same thing has just happened to us. My OH was diagnosed with Alzheimer's aged 50, in March. He's terrible fidgety, always has been. We recently saw a neurologist for the first time who wants to test him for Huntingtons. Which seems bizarre as there's no family history. We are doing nothing about testing at the min as the implications for our kids and family are massive, and we are only just starting to get our heads around the Alz diagnosis. So at the min it can wait. My OH is exactly the same, nothing's changed and he's fine according to him ( Everything's changed and it's not fine according to me, I don't recognise him as the man I knew &#128549 xxx
    I hope you dont mind me answering the question directed at feeb, but I suspect that the reason that they are thinking about Huntingtons is because the symptoms of Huntingtons are the same as FTD with ALS - just caused by a different thing. A genetic test would easily confirm/rule out Huntingtons. I hope you get some answers soon.
    Learning to sing in a cage

  7. #22
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    Quote Originally Posted by canary View Post
    I hope you dont mind me answering the question directed at feeb, but I suspect that the reason that they are thinking about Huntingtons is because the symptoms of Huntingtons are the same as FTD with ALS - just caused by a different thing. A genetic test would easily confirm/rule out Huntingtons. I hope you get some answers soon.
    Thanks Canary, never thought about that, gives me much more food for thought. I agree with Feeb, although outcomes are pretty much the same a clear diagnosis can help give you some idea of what symptoms/ behaviours to expect. I know clear diagnosis is difficult at times but having your diagnosis queried ( like in our case, and Feebs) does add stress to the situation greatly!!!!

  8. #23
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    Quote Originally Posted by canary View Post
    I would guess that its not denial, but anosognosia - an inability to understand that there is something wrong (common in dementia). There comes a time when you have to change your mindset from going along with and enabling what they want, to persuading and enforcing what they need.
    Anosognosia is a new word to me, but perfectly describes my OH's 'denial' of his eoAD.

    I think he *was* in denial about three years ago and that also made him very angry, but in the last year he has been much calmer/happier and the denial verges on complete forgetfulness.

    It is still a strain finding ingenious ways of going along with his conviction that nothing is wrong with him, but to some extent his increasing forgetfulness and confusion is helping a bit. Seems awful to say that though.

  9. #24
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    Update

    I wanted to post an update re my husband's diagnosis. We still have tests results outstanding (Prions and Huntingtons) but I had a long talk with the neurologist on the 'phone yesterday and her conclusion is that OH "very probably" has FTD. This hasnt come as a shock - I think I accepted the idea that he has developed dementia a few months ago. After reading about FTD and posts of this forum I am not surprised by this opinion. My step-son is living with us at the moment and I feel bad for him. He is a (sometimes surprising) source of support. I also get a lot of support from my husband's brother and his wife, both of whom have nursing backgrounds and a lot of professional insight.

    This is a new (year old) marriage although I have known my husband for decades and we have been together about 4 years. I am still feeling somewhat shocked and cheated, and am keeping myself together by reaching out and trying to get a network together and by trying to make practical plans (actually I feel as though half my time is spent trying to get legal/financial stuff in some sort of order). It does feel a bit better to have a firmer idea of where we are; hopefully we can now move on a bit, e.g. looking at early retirement.

    I bought (an ebay) jacket the other day and came downstairs in it. My husband said, "Darling, you look lovely in that cake." Isnt that lovely?

  10. #25
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    Hello pheeb. Im glad you have got a (probable) diagnosis now.
    Yes, the time after diagnosis is often taken up with sorting legal/financial stuff in place. I do hope you have managed to sort out wills, POA, PiP (and if he gets that you can claim for carers allowance) and council tax disregard (but thats only worth it if there are only 2 adults in the house). Retirement can work well. My OH took medical retirement and I took early retirement. Fortunately the house has no mortgage now.
    Learning to sing in a cage

  11. #26
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    Many thanks

    Quote Originally Posted by canary View Post
    Hello pheeb. Im glad you have got a (probable) diagnosis now.
    Yes, the time after diagnosis is often taken up with sorting legal/financial stuff in place. I do hope you have managed to sort out wills, POA, PiP (and if he gets that you can claim for carers allowance) and council tax disregard (but thats only worth it if there are only 2 adults in the house). Retirement can work well. My OH took medical retirement and I took early retirement. Fortunately the house has no mortgage now.
    Hi Canary

    Many thanks for your advice. I am part-way into wills and POA. I havent done anything about PiP - I'll add it to the to do list. My next job is going to be seeing the GP by myself to discuss how to manage the next few months and to see what onward referral the GP can make. I am also getting on to early retirement. I'd be very grateful for any advice re support for FTD; you mentioned a specialist forum in an earlier post? I hope you are enjoying your weekend.

  12. #27
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    Im glad you are getting on with wills and POA - they caused my OH so much anxiety with muttering, pacing and explosive anger I breathed a sigh of relief when he signed.
    I would recommend that you get CAB or Age UK to give you a hand in filling in the PiP forms when you start as FTD is quite unusual and many people do not understand it, but CAB/Age UI know the "buzz words" to use and the way of describing things.

    The specialist forum that I use is this one http://www.ftdsupportforum.com/ It is based in USA, but has members from all over the world including quite a few from UK. I dont tend to talk much on here about my OH as it might get back to him, but that is a closed site that you have to be a member of before you can see anything.
    Learning to sing in a cage

  13. #28
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    forum

    Could I ask what FTD forum you use please?

  14. #29
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    or would recommend?

  15. #30
    Registered User Kevinl's Avatar
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    Quote Originally Posted by vanman View Post
    Could I ask what FTD forum you use please?
    canary put a link in the post to the site, if you click on the link below it will take you to the site.
    K

    http://www.ftdsupportforum.com/
    If you're going through hell, keep going

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