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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When it comes to sales people it causes my anxiety to spike through the roof and about a week ago my 2015 jeep grandcherokee had 200k on it.i had that car from when it was brand new 3 weeks before my daughter was born. I'm driving it and something didn't seem right I asked my husband to drive it he said he thinks the transmission was going and our mechanic told us he was right and time for a new...
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As I hate car shopping I go to start the process online and they have me come in I had told them what I wanted.i was happy with my jeep grandcherokee I had for the last 11 years I got it 3 weeks before my daughter was born and I put 200k on it. Cars are so expensive I feel is though I might as well go for the Lexus because I'm need an suv for my kids and for family activities and I got a dog.the...
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.