One of the toughest aspect of Huntington's and some other neurological conditions is dealing with dementia on a daily basis. My sister had dementia for many years and I spent many hours answering all the same questions and trying to explain things only for her to forget and get confused all over again. The dementia symptom I noticed the most was how easily she was confused by things. She started asking a lot of child-like questions as her ability to reason things out was completely gone. She lost the ability for small talk and for initiating conversations.
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There are a lot of people with Huntington's who can have a problem with being mean to their loved ones. Sometimes HD can completely change a person’s personality and other times it amplifies what is already there. My father was a very kind and gentle man and as his HD progressed he became kinder and gentler. In his case it amplified his existing personality rather than changing it.
It has now been over five months since my sister Shannon passed away of Huntington’s and all around me life goes on. After years of being beside her through her journey and putting all my energy into trying to always be a good sister to her especially the last three years, there is a strange and unfamiliar inner peace inside me which I have not felt in many years. My other sister and I did everything in our power to make her life as happy and comfortable as possible. We showed her all the love we possibly could.
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.
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.
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