WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

jenny

How many others are new to HD as in having no family history or experience with this disease? My husband was diagnosed in 2004 after some years of strange symptoms. His driving became erratic. He had choking episodes. He couldn't remember how to do his carpentry work. It was so weird, the neuro was thinking it might be HD, but because there was no family history, said it was a long shot. Even he was surprised at the diagnosis. 43 CAG repeats It seems his mother and maternal grandmother had it, but his mother is 83 and has only mild symptoms...you would only put it down to her age. I have learned more from forums such as this, than from medical websites. It's the family experience that makes the difference. The emotional rather than the clinical input. After you have the basics, medically speaking, the rest is provided by all of you sharing your first hand experiences with us. I am so grateful for your comments....I could not travel this road without you, Love to you all...Jaycee14 months ago

Marsha

My mother in law was the first in her large family to get HD, then my former husband did as well. She was diagnosed in her 70s and my ex at 50. Her CAG count was 40 so we think that one of her parents (who died of other causes at 75 and 89) probably had a normal but unstable gene.14 months ago

DCB

My father was the 1st in our family to be diagnosed, and that was about 5 years ago. We dont know if it came from grma/pa since both were in NHs for other issues - both died in their 80's. My dads CAG is 41 and I have been tested as gene pos with a CAG of 42.........My brthr and I have spent many hours pondering which grandparent it came from and when dads symptoms started--at this point its all a guess--but he was def diagnosed at age 58 and this was the very first time my brthr and I ever heard the words "huntingtons disease". So you are not alone, its new to alot of us--hpe that helps14 months ago

Daniela

My maternal grandmother was diagnosed with HD in 1999 after several accidents due to clumsiness, balance issues and severe mood swings.  It was my mother who suggested she get tested as all other family members didn't think there was an issue or wanted to deal with it - which to this day they still don't!

After this my mother and her siblings also got tested with my mother, her brother and a sister testing positive for the disease - this was in 2000.  Again there was no documented family history which made it very hard to understand what the disease was about and how to best cope with it.  She has a CAG of either 43 or 44 repeats with my grandmother only having around 41 or 42.

I tested negative to the gene in 2004 however my older brother has never been tested and lately feels that he may have the disease.  He doesn't want to go through the counselling process in order to get tested and just wants to have the blood test - I wonder if this can be done but I'm guessing legally there is a duty of care?

My mother's symptoms have become progressively worse with my brother and I spending many hours talking about what we can do in order to help & support her as well as supporting my father (who incidentally takes the brunt of her emotional & aggressive outbursts).  My mother has a social worker however we both feel that she isn't helping my mother at all nor is she being very supportive or objective towards the family. 

Even though it has been 7yrs since the diagnosis we are still new to HD in that we don't really know the best way to go about getting help and advise regarding what options my mother has - she can still do many things but it is her outbursts which have the greatest impact as we fear she may harm my father or worse herself.

After a pretty stressful Christmas I decided to start looking on the internet for groups, communities, forums that I could join in order to be able to share similar experiences with people, offer support and seek advice and help.  Thank you to everyone for their comments, articles and experiences.

12 months ago