Huntington's Disease Support Group
Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of various mental abilities. The symptoms of Huntington's disease occur gradually over time - there is no sudden loss of abilities and it is hard to determine when symptoms initially occur.
Ok so I go and see the neurologist to be tested for HD. Mom had it her sister had tomorrow had it grandma had it and all of her brothers and sisters had it. I was diagnosed in 2005 with bipolar and a year before that I took off and left and ended up in Texas. I came B back home in 2009 and have been home several years now but in the back of my mind the feeling of wanting to run has always been there. I've got diabetes and thyroid issues but I'm showing almost all of the symptoms and I'm in a group on Facebook and every time they say something about another issue I'm sitting here thinking that's me. The jerking started in Nov 2019 in my hands and it's beginning in my legs when I try to walk...anyone else go through this?
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Today has barely tough. I have five children my 20-year-old son is currently in the hospital and he has 365 away it's been really difficult because I want to be able to get to him so I can see him although he's very stable he's actually probably getting ready to go home so. I've been contacting him daily on messenger so I can see his face and hear his voice however certain family members have...
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I know my mommy is no longer suffering in this life. But sometimes I feel like i killed her. The doctors explained how her organs had shut down and once the life support was removed the body would completely stop functioning. I couldn't imagine a world where my mom would be a breathing vegetable for years in a nursing facility. Watching my mom's body labor over half a day to transition will...
I married into an HD family, but never heard "The H Word" until I had been married for around 10 years. I had little choice but to *simply* assume my MIL was the meanest, most two-faced rattlesnake in Texas. Learning about HD sure put a new slant on why she was so unpredictable.
My husband tested negative a few years later, but was showing severe symptoms by the time I went Wife-a-kazi on him and insisted he be tested. The symptoms disappeared as soon as he heard the test results. The reason I tell this tale here is by way of letting you know just how powerful mind over matter can be. Yay you for reaching out to find a place where you can air your symptoms freely and openly. My BIL tested positive and has taken a proactive approach to managing his symptoms and it has made a huge difference over what his mother went through with the strong and silent approach. It is still difficult for him, but support helps ease the journey.
While DS is a very active support site, this particular forum is slower than winter molasses. While I encourage you to surf around this site and see what other flavors of support might help you here, I am also including a link to the web site for the Huntington's Disease Society of America (HDSA). They are where my BIL gains his support and even have smatterings of support for folks like myself who are lost on the periphery. They are a dynamic group and their national conventions are magnificent blend of pragmatism and fun.
https://hdsa.org/find-help/community-social-support/hdsa-support-groups/
Gentle support while you find your way through, Cameron. You are not alone.
That would, indeed, be frustrating. The right answer to the wrong question isn't worth much. Pulmonary is important, too, buttttttaaaaa. . .
How you holding up? Do your next step arranged?
Gentle suggestion
An on-going dialog might be easier if:
A) You make a new post for each new development
...............or
B) Personal message
For what it's worth
I have long hoped to see this forum take off. Huntington's families all to often suffer alone in secretive silence. I wonder if a new post for each development might tempt some of the lurkers to participate. Just wondering.