I'm in process of diagnosis of Dementia 39 years old Sat.

[dianes]

Hi, I just joined this forum. I just need some support. I am in the process I getting diagnosed with Lewy Body Dementia. I have had the sleep disorder REM Behavioural Disorder for about 15 years and now I find out it leads to Lewy Body Dementia.

I am 39 years old and have been having bad memory problems for months. Some days are good and then other days are so horrible. I have hard time finding the right word and have to describe the word to know what it is. I am forgetting current events ... people's names I used to know and the list goes on. Some days I have total confusion. I have a difficult time comprehending anything. Unable to process what I'm suppose to be doing ... where I'm suppose to be ... hard to think ... hard to understand what people are saying. Noises bother me when I'm confused. I don't want a tv or radio on and I try to avoid hearing people talking. I get very agitated. I feel frustrated.

I have a hard time with communication ... some days I start slurring my words ... or I have hard time getting word out of my mouth .. hard time co-ordinating my mouth with my words. Hard time finding a word ... like I don't remember the name "Cat" and have to describe a cat for a person to know what that word is.

I have such horrible mood swings ... get frustrated especially when confused and get angry at myself ... I get scared for how I'm feeling ... emotional - not pms. Not depressed.

I have a hard time with concentration- when confused can not concentrate on people's conversations or tv ... I have to keep moving or changing what I'm doing.

I'm losing my balance easily and forever knocking into something ... gets me mad. And the list goes on.

It's so much easier to type my thoughts ... as I can take as much time as I need and no pressure.

I feel so alone because my family do not understand what I'm going through. I'm not married ... fiance died and have a baby in heaven. I live alone and it's getting difficult to manage things.

My Dad had Alzheimer's ... I know I don't have that as Lewy Body Dementia is associated with the sleep disorder I have. My dad got AD in his 50's and died when he was 69 years old (10 years ago). My Mom had such a difficult time dealing with my Dad and I don't want her see me when things are bad.

Thanks for listening.

~Diane

 

[May]

Hi Diane
Just wanted to say Welcome to TP. I'm in the UK, so don't know how your health system works, but have you got any professional help you can turn too? I'm sorry you are having such a tough time. Come back often and post, this is a very supportive online community.
Take care

 

[dianes]

Hi May,

Thanks for responding ... I don't want to seek help until I have a diagnosis. We do have a good health system here ... but people here do not have much knowledge of my sleep disorder that for whatever reason leads to Lewy Body Dementia and I'm scared I'm not going to be taken seriously. I found out the connection (during the time I didn't understand what was going on with me) and it was on the news about a study that doctors at the Mayo Clinic (USA) did that connected the sleep disorder with Lewy Body Dementia. I showed my doctor the article from their web site. I just don't know what to do.

~Diane