Posted , 8 users are following.
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
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BrusselsSprout tracya1964
Posted
Dear Tracey,
I was diagnosed in 2013, and I am also in Oklahoma. For about two years I couldn't deal with anything, couldn't eat or sleep. I could only watch football reruns on cable because it didn't make me think about my condition. It's nearly 5 years since I was diagnosed and I am starting to feel my motor skills deteriorate. It's harder to write or type, and I am starting to stagger when I walk. All that behavioral stuff is true. I hoot and holler at people on the phone and on the street, and really don't care if I hear about a whole lot of them dying in a disaster. I don't feel for them at all. Every year I used to cry on the anniversary of the Murrah bombing but I quit watching the ceremony a few years ago. Nothing like that moves me anymore.
My life is confined to my house and mostly my bedroom. No friends but my ex-husband/caregiver. My family lives in another state and they have never talked to me about this disease, not even to say, "I am sorry you're dying." LOL And my own niece got married recently. We were very close before they moved away and she didn't even tell me she was going to be married. I wasn't invited. More than likely I wouldn't have gone because I can't afford it on disability but it would have been nice to be asked. No wedding gift from me!!!
I hope you still check on this site because I have never been so lonely in my life. I hope you have somebody to talk to. BTW my doctor said I was going to become a vegetable, hence the name BrusselsSprout.