My dad has HD but he was not diagnosed with HD until two years ago at the age of 73. Now though looking back on all the years my dad has been so sick and being diagnosed wrong with multiple things like Parkinson's etc., Huntington's Disease makes perfect sense as his FINAL diagnosis.

It has been a very long and difficult road for my dad and for me since he started showing symptoms at about the age of 52. He had to have brain surgery also around this age and he has never been the same since that surgery and he just continued to get worse over time.

We just related all of his problems and symptoms to the fact that he had the brain surgery and that he just was not well after that. He also had to have his leg amputated due to cancer, and he had a prostetic leg that (what we thought) made it hard for him to keep his balance and walk without being unsteady. All along it was the HD that my dad was suffering from.

We never had any true diagnoses of HD in the family but after learning my dad had HD and all of the research I have done, we now know that my dads dad must have had HD.

My dad said my grandpa used to shake and move all the time. Everyone thought he was an alcoholic and that's why he moved and shaked all the time. He died of what they thought was a stroke at about 53, but I think it was from HD.

My dads grandma ( my great grandma) also died in her 50's in a mental hospital and they just thought she was mentally disturbed but now we think she died from HD too.

I am still trying to find out the CAG number for my dads HD. I know that is useful information for all of us. I have 5 siblings plus me that are all at risk for HD now, plus many nieces and nephews, grandchildren. I am 42 years old and I am the only one is my family besides my dad that seems to NOT be in denial about HD and how serious this disease is.

I have so much to say now that I can finally relate to all of you on this site, so thank you very much. I worry and think constantly about how sick my dad is now and the suffering he is enduring at the later stages of HD.

I also think that I am showing symptoms of HD too. I have suffered from depression for about the last 15 years and it has seemed to only get worse over the years. I have also had a problem with severe dizziness and headaches for the past 15 years as well.

I have been diagnosed with vertigo and chronic headaches/depression several times by different doctors and have been on numerous medications that have never really worked at all. I have severe dizziness and headaches almost 24/7 nonstop and depression. I am going to go to be tested soon so that I can find out if this is the HD. I also feel muscle twitches and slight jerking at times.

I am sorry if this was too long. Thank you for listening.

Welcome Jen.

Hi Jen. It's clearly a relief for you to now know what your father and his family line have been dealing with. Hoping for the best for him and also that you find some solutions for your own medical problems, no matter what is causing them.

Thank you for the welcome. Yes, it is a relief for sure to at least now understand what HD is after not knowing for so long.

Welcome Jen!

Thank you Carla.

Welcome Jen! Your post really sounded familiar to what my family has gone through! I have been to this sight many times over the years and never posted a comment (that I remember). It took me awhile to get tested but I did about two years ago. I am almost 46 yrs old and my cag is 42. My mother is now in beginning of the late stages and living in assisted living for the last year. It has been a long road! I have so many family member with this horrible disease.
I feel blessed now to only have twitching in my legs and ANXIETY! I love my job teaching - but it is very stressful!
I now worry my future financial matters! It changes how you look at everything and it can really be overwhelming.
Over the last year, my sister and I have taken turns getting her for overnight visits and taking her out to eat several times
a week. It was a long ride back for me yesterday because I really realized that will probably be the last. She is quickly declining. I am constantly looking for medical updates. And there are plenty - just nothing to halt or cure this disease.
I try to stay positive with PRAYER - enjoy family, food and friends and some red wine on the weekends!
Look forward to hearing from you again!

Hello there,

Well, here I am back on this site 8 years later and I DO have HD.

I was finally tested a few weeks ago my CAG is 41. Reading my old posts gave me crazy chills because even back then I thought I Had HD and I was exactly right its insane how I knew even that long ago. I am having a hard time with this positive diagnosis its still new this diagnosis. I am honestly not ok. I really would love to connect with others on here. Is anybody around?


Thank you.

Did anyone get back to you ? I just reconnected too . Or has this become , a sight they don't use anymore ?

Hi, I think the guy at the Twitter profile below used to run this site. You might try contacting him to find out what's going on with the site.

[twitter.com]

Eric

thank you no guess not many on here anymore.