Everywhere I go the world is filled with a lot of noise. Restaurants and hotels seem to be the worst for playing music way too loud. The list of places I had to leave increased by two last week when I was on a week long trip and eating out a lot. It physically hurts my head and it's like being stuck on an all static channel on the TV. It becomes painful if I try and tough it out - it is like my ears are amplifying every thing by ten and the most simplest of noises do become an issue for people with HD.
Kelly B's blog
This year has sure flown by. It is so hard to believe a new year is right around the corner, let alone my birthday and Christmas again.
I turned 48 on my last birthday. Another year and a half and I will be 50. Time sure is flying.
I will be going to the clinic in July and will be interested to hear of the new effective treatments they have now for slowing the HD down. I am also hoping I will get on the list for the gene silencing treatments. It has been 3 or 4 years since I have been there so it is time.
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.
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.
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.
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.
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.