My younger brother Steve died peacefully in his sleep on September 6, 2014 after a rapid deterioration of his Huntington’s symptoms. He and I had been close as kids, but we drifted apart when our lives took us in different directions as adults.
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I recently had my annual full body scan by my dermatologist for skin cancer. When he entered the examining room I threw my hands up and said, “I plead guilty to running shirtless in the summer without sunscreen!” It was obvious from my perpetual upper body tan, which fades a little in winter.
Staying sane while living with Huntington's and dealing with affected family members can he a huge challenge for HD families. We are all set to different levels of sanity so some of us have more to spare then others do. I have always found it funny that it is the insane people who believe themselves to be completely sane but it is the sane people who actually question their sanity. So if you wonder if you ARE crazy it is actually proof that you are not. Crazy but true.
Like many other illnesses, Huntington’s disease can strike without warning—changing a person’s life forever. In the days, weeks, and months following a diagnosis of Huntington’s disease, it is important to plan for the future. Although it is important to discuss medical and supportive care options, you should also make financial plans.
If you or a loved one has Huntington’s disease, it may become necessary to apply for Social Security Disability benefits. Disability benefits can provide financial support to those who can no longer work due to disability or illness.
It’s fine to give blood when you’ve tested positive for the HD gene. I was a regular donor when I found out I had it and one of the first things I did was to check to see if I could still give. At the time I was a blood drive sponsor for a North Carolina agency and had access to the full Red Cross eligibility manual. It said, “… donors with the Huntington’s Disease gene are acceptable as long as any involuntary movements will not affect the donation process”.
I’ve written before about finding excuses not to take proactive steps to fight the Huntington’s Disease demons. I’ll try to never quit that battle. However, there are some times when you have to stop doing something, like driving, to insure your safety and that of everyone else on the road. That’s a very difficult thing to do, since it means losing your freedom and admitting that the disease has gotten the better of you
Perspective is the ultimate way to be able to put the things that happen in life into proper focus. How we view things has everything to do with how big a deal we make of some things. There are always three choices in any given situation: Give up, give in or give it all you've got. Time is going extremely fast and in just two days from now, tomorrow will already be yesterday.
I had been a Home Support worker for years before I was diagnosed with HD. This would prove to be a huge benefit to me and helped me to put my HD in perspective.
Last Saturday morning I took Sassy, our rescued 13 year old Shih Tzu, on her regular morning stroll in our backyard. We live on a heavily wooded lot with pine trees reaching up 90 to 100 feet. We were just about at the base of one when Sassy jumped backwards. I looked down and there was something on the ground covered in grayish down.
This past Saturday I ran my annual 50 mile race at the Umstead 100 Mile Endurance Run in my hometown of Raleigh, NC. I have finished the 100 five times and the optional 50 miler 9 times, including this year. I’m also on the Race Committee and handle registration and awards.
I know when we fell in love. She was dating my roommate in prep school. Yes, I went to a snotty boy’s boarding school in New England. I wasn’t from a wealthy family, but had a working scholarship. I worked in the kitchen every day to earn my way through. She was from an old family and went to a snotty private girl’s school. I’m not sure how it happened – it just did. I was kind of a jock – co-captain of the hockey team and a starting attackman on the lacrosse team. Maybe that attracted her. She was smart and physically attractive.