Hi! My name is Sue. This message might be a long one (sorry for that) but it's hard to let you know where I'm coming from without explaining every detail of this nightmare my mother and I are going thru.

My mother lives in Canada and I live in NH with my husband and three children.

My mother has not been well for about 10 yrs. She suffered a stroke in 1990 (she was lucky--no damage) but since then her health has deteriorated on a yearly basis. Her neurologist has preformed MRI's every year since that stroke. The results every year has been that she has "small strokes" or "silent strokes", I guess they are called "Transient Ischemic Attacks". He would tell her that small parts of the right side of her brain would die everytime she has a "small stroke". For years now, my information has come stricly from my mother via telephone.
My recollection from the past years hearing events from relative in Canada is "Your mother is not well, losing weight, falling, moving her fingers constantly, seeming spaced out. But I assume things were being handle from her physician and herself. Mom never indicated to me of these problems.

Here is the story: In May I received a phone call from my uncle in Canada telling me my mother was hospitalized. She has a mild case of pneumonia. My relatives felt it was necessary for me to come home to Canada to see her. They were extremely concerned. At this point I am confused but make the 11 hour trip to New-Brunswick. Upon arrival at the hospital I was shock, she weights only 85lbs. skinny as a rail...(I had not seen her in two years). I took her home to her apt. and starting making telephone calls to her doctors to see what had happened to my beautiful mother, why is she losing weight, seems out of it and moves her fingers and feet now. Well, if I say The Canada Medical System it should be enough for you to understand that I did not get very far. So I returned home and place a call to her Neurologist on June 10. I introduced myself and said I realize my mother is having "small strokes" is this what is causing her problems.

His answer to me is when my whole world turned up side down.

He says: I believe your mother may have Huntington Chorea (Disease). Of course, I am confused (not knowing what this disease was at that time) He procede to explain that because she has severe chorea movements indicates to him the possibility. I listen (in fear) as he explains how he could arrange genetic testing for her and myself in Nova-Scotia (I live in NH). My head is spinning at this point so I kindly thank him for his time and tell him I will get back to him.

I faxed him a letter full of questions regarding statistics of HD and why all these years he has not indicated to mom the possibility of HD. My mother has 5 siblings who are older than she is (mom is 58 yrs old). They are healthy...my grandparents lived until early nineties. What are the chance of my mother developing this gene on her own?

Well, her doctor would not discuss these questions with me on the telephone or without a genetic counselor but when I went to Canada in August he was on vacation ( I was aware of the bad timing but that's the only vaca. time I had).

I know this is a long story...but I guess what I am trying to understand is what has happened.

Maybe someone can help me understand...if she has received MRI's on her brain all these years...would they have not diagnosed HD???

I have spend countless hours on the internet, at the library learning about HD. I'll admit she has a lot of similar symptoms of HD. It scares me.

I realized that if mom has HD, that my chance are 50% of having the gene. I'll admit at times I look at myself in the mirror and try to convince myself that I look like my father.

I guess I don't even know where or what to do. I have not told my mother of her doctor thought about HD. Because I don't feel she would understand the genetic stuff and what good would it do for her to worry about me and my three kids.

Well I have taking enough of your time and re-read my message. I know it a lot of rambling but understand I'm confused. Any input or questions please feel free to write.

Thanks for reading...

Sincerely, Sue