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I have FTD

Posted , 8 users are following.

tracya1964
tracya1964

I am a 50 year old woman from Oklahoma, USA, diagnosed with FTD 2 yrs ago. Most posts I see about FTD are from caregivers. I'd like to connect with people who have the disease, to have someone to share the frustrations and fears and, yes, even the humorous aspects. Is there anyone out there?

1 like, 17 replies

17 Replies

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  • lily65668
    lily65668 tracya1964

    Posted

    Hope you can find someone to help with this, Tracy. The trouble is, it's a comparatively rare condition and I doubt whether there are a lot of sufferers out there who would see your post on this forum. Have you tried googling the Association for Frontotemporal Degeneration? I see they're US based, and offer support for sufferers as well as carers.
  • Rhods
    Rhods tracya1964

    Posted

    Hi Tracy, I'm very sorry to hear about your diagnosis. My mother passed away 8 years ago with Pick's disease(FTD) she was 60 yrs old. We were hoping it was a one off but sadly it's the hereditary type because my eldest sister who is 48 now has been showing signs of it for about 3 years. I've been to see a neurologist because I was getting wierd feelings in my head but I also have nasal problems, a pulsating throbbing sensation behind my nose after I was kicked by a horse 10 years ago. But as you can imagine I worry about ftd. My mother was adopted as a child as her mother passed away when she was a baby but her side of the family were clear of the faulty gene but her father who we have no history of moved from the UK to Australia but can't be traced. But he must be the carrier. Do you get wierd head feelings? I'm having a genetic test soon. xx
  • jo32669
    jo32669 tracya1964

    Posted

    Hello. Are you still available to chat?
    • Rhods
      Rhods jo32669

      Posted

      Hi Jo, I dont think she is, but I am if you want.
    • jo32669
      jo32669 Rhods

      Posted

      Hello

       Do you have FTD please. I am terribly  afraid and not functioning. Been misdiagnosed for 17 years. Are you in the uk?

      Thank you 

      Jo

       

    • Rhods
      Rhods jo32669

      Posted

      Hi Jo, I'm sorry to hear your concern. I am going through the genetic counselling at the moment because of the familial dementia that runs in my family then I will go for the blood test to see if I carry the faulty gene. You say you've been suffering for 17 years? That sounds a bit too long for it to be dementia, have you been to a doctor?

    • Rhods
      Rhods

      Posted

      Yes I'm in Wales.

    • jo32669
      jo32669

      Posted

      Yes

       Seen many doctors and psychiatrists etc through the years to no avail. Always diagnosed with extreme anxiety and depression. I have had remissions through the years of varying lengths. I have been deteriorating every day for the last 11 months and am struggling to speak now and keep repeating the same sentences. Also struggling to behave appropriately as nothing feels real.

      Have you had a family member with this? Thanks Jo

    • Rhods
      Rhods jo32669

      Posted

      Yes, my mother had frontotemporal dementia and died 10 years ago at the age of 60 and now my eldest sister is suffering from it she's just turned 50 but has shown signs of it for about 5 years. Have you had an MRI scan?

    • jo32669
      jo32669 Rhods

      Posted

      So sorry to hear your sad news. Yes I had an MRI two weeks ago which I have had differing  opinions on. Sorry to ask but did your Mum have periods of remission of her symptoms for up to a year? Thank you for chatting with me  and I wish you all the best

    • jo32669
      jo32669

      Posted

      Have you had any involvement with an Admiral Nurse?
    • Rhods
      Rhods jo32669

      Posted

      Thank you, I can't recall she had remission of her symptoms but the doctor though she had menopause or a thyroid problem, we'd seen a change in her personality when she was about 45 years old but she was diagnosed at the age of 50, she had an mri scan then which showed the problem clearly.

    • Rhods
      Rhods jo32669

      Posted

      My sisters daughter is in contact with a Admiral nurse, she visits her frequently.
    • Rockers
      Rockers jo32669

      Posted

      May I ask if you have any other symptoms apart from speaking and behavioral problems? Just asking as I`m very much worried about dementia too. And like you had periods or remission for a year or longer. But then each time I relapsed the symptoms were a lot worse and now I`m stuck for 3 years in a fog, with worsening concentration, multi tasking becoming more difficult, loud noises becoming intolerable , problems finding the right words at times etc. Looking back over the years I had at least 4 episodes like this and each of them worse then the previous one.
  • gillian89280
    gillian89280 tracya1964

    Posted

    Hi. My sister died at the age of 46 with FTD 20 yrs ago at the age of 47. Her daughter my neice died 2 years ago at the age of 47 with FTD. Mu neices daughter has been genetically tested and she has the gene she is 27. My own daughter has physical symptoms like my sister and has been diagnosed as having dystonia shes 35. Could i be a carrier of FTD but have no symptoms I'm 64.

    • Rhods
      Rhods gillian89280

      Posted

      Hi Gillian, I doubt that you could be a carrier without the symptoms, but it's very strange that your daughter has symptoms, why don't you get genetically tested? Good luck.

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