Community

Welcome to the community section of HDLF.org. This section is intended to help guide you through the wealth of information available on the Internet for families affected by Huntington disease.

We invite you to try out our active message board at HDLF Forum. It's a public message board so that you can chose to just read what's there or actually participate by helping others or getting answers to your own questions.

To My Newest HD Angel

After years of my watching her progression from a front row seat, my oldest sister finally passed away almost two months ago now. I have been dragging my feet at writing this final chapter of her life as I knew it was going to make me sad all over again and stir up all the grief I still feel in my heart for her.

In the five weeks before her death she had a stroke and as her sister, seeing her in diapers and then having to be fed minced food as she had lost the ability to chew with the stroke, I was saddened at the further hit to her pride.

HD and Cancer

Splitting cancer cells

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

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.

Huntington’s Disease and Social Security Disability Benefits

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.

Donating Blood With The HD Gene

Will giving blood

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”.

When It’s Time To Quit

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

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.

Finding An Excuse to Quit

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.