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.
We all know that exercise is beneficial for everyone. It’s particularly important for people with, or at-risk for HD. A New Year’s resolution made and kept will make you look and feel better. Do you have to go to a gym 6 days a week and sweat bullets to get in shape? NO!!! Do you have to run marathons? NO!!! Do you have to spend a fortune on fancy equipment? NO!!!
Delusions can be a big part of Huntingtons with some people. I have a sister who is completely delusional. It really keeps us on our toes to try to keep up with all the different ideas she comes up with. Trying to reason all the time with someone who has an altered grasp of reality and a 5 second memory span is a full time dance/job. She keeps coming up with these brilliant ideas but because she does not see her disability at all she feels she is capable of everything and everything.
The time will come for each and everyone of us when we will need someone else to do our talking for us. A few months ago there was something that happened that made it clear I had gone from needing a part time advocate to a full time advocate. I relocated again last winter and had to go through the process of getting a new dentist and family doctor. I have run into problems in the past with dentists as they do not understand that I have to be medicated for them to be able to work on me.
Back in 1982 after my daughter Allison was born, we knew that something was wrong with my wife Toni, we just didn't know what. She just didn't have the glow of a new mother and her apprehension was concerning. After four years of mystery and misdiagnoses, we were finally given an answer: Huntington's Disease. Since my wife was adopted as an infant, she had no family medical history. Thankfully, my mother-in-law was willing to help keep us going in those early years. Toni died in 1993 at the age of 33. Allison was 10 years old.