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  1. #16
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    Join Date
    Mar 2011
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    91
    Quote Originally Posted by Dolly27 View Post
    Hi all, as Devonians, I'm sure you've heard of norms macnamarra , he has early onset dementia himself, and is very involved in raising awareness for early dementia, also runs a memory cafe , etc and has been involved in the Torbay dementia action alliance , hope you find this information helpful ; good luck in your aims to have a group .....
    Hi Dolly27,
    Yes I've heard of Normms and his amazing work. It is on my 'to do' list to contact him
    We originally looked at starting a group in the areas of Devon that have no support at all, but we are struggling to find more people. Still waiting to hear back from consultants and GP's so hopefully the word will spread gradually.
    Thanks for the input - much appreciated.
    Harriet

  2. #17
    Registered User
    Join Date
    Mar 2011
    Posts
    91
    Quote Originally Posted by harleychick View Post
    Hi harriet66 and roseash
    Good luck to both of you trying to get a group together in north Devon.
    I live in East Devon. My husband is only just 50 and was
    Diagnosed with Familial Alz Disease at the age of 46 but I know
    the symptoms started many years before now looking back! In the last year he has deteriorated rapidly and the last 3 months have been dreadful. So much so that 3 weeks ago he was moved into a care home after spending 2 months in a special unit in Exeter. It was the most difficult decision I have ever made and I am still struggling to come to terms with it but I know it is the right decision. We have 2 teenage daughters, 15 and 17, and he deteriorated so much that life at home became unmanageable. My girls are amazing but it has been hard on all of us. I did start to read the forum last year but things became so difficult at home that I didn't even hv time to read the blog. I hv just come back to it this last week!
    Mike and I used to attend a younger persons group in sidmouth once a month which was wonderful. I still go but that has been under threat recently!!!! Also the dementia day are unit in sidmouth has now closed down.....and the government says they will do more!!!!!! I'm not seeing that! I still go to the meetings when I can as the support is invaluable from the other carers. I wud love to perhaps join u one day at one of yr meetings but currently I struggle to fit everything g in with my visits to see mike. I also attend support groups in London at UCL where they give talks and support on Familial alz.
    Sorry I've rambled a bit..... I just wanted to let u know I'm not far away from u both. All the best and keep strong
    Liz
    Hi Harleychick,
    It's good to see you back on the forum though very sad to read your news. I remember reading your post at the end of last year.I'm so sorry to hear of your husband's deterioration - it must be a very difficult time for all of you. Things seem to have moved very fast in your husband's case.
    It's terrible that all the services in your area are closing down. We are in the 'backwoods' out here where little was ever done for people of our age, so we're starting from scratch.
    Do the meetings at UCL only cover Familial Alz? Do they do meetings for people with vascular dementia too? I'm struggling to find reliable info about my husband's condition - very few people in the profession have ever come across it.

    It would be great to see you at a meeting. Hope that your husband settles and that things become calmer for you all.
    All the best,
    Harriet

 

 

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