Sunday, October 11, 2015

Huntington's Disease: quick breakdown and how it affected me

On August 1st of this year, my mother passed away from Huntington's Disease.  I knew her time was limited, but I didn't expect her to falter so quickly since I last visited her. I last saw her in August of 2014. At that point, she was visibly getting worse, but I honestly thought she would hang in at least another 3-5 years.

What is Huntington's Disease you ask?

I still don't have a complete understanding, but I did find some useful images to share with you. Anytime someone asked me what HD was, I would say "It's like a combination of Parkinson's and Alzheimer's."  I wasn't too far off.

Here's another graphic, that actually has a picture of what a normal brain looks like vs an HD affected brain:

My mother was diagnosed roughly 15 years ago. At the time of her official diagnoses, my parents were divorcing, my dad requested the sale of the home they had lived in for over 20 years, and my sister chose to go live with our dad. Also, I was pregnant with my second child and heading to Mexico for a 6mo visit.  A lot was going on back then.  I was told of her diagnoses, and the impending divorce and sale of the house, while I was in Mexico.

Over the past 15 years, I never really read up on the disease. All I knew was that my grandma Helen had it, and my mom had it, and there was a 50/50 chance my sister would get it.

I watched and dealt with all of the symptoms my mom experienced, and the repercussions of the symptoms.  I found this graphic that explains the symptoms:
 At first my mom showed signs of rigid, inflexible thoughts, irritability, and depression. That was before the official diagnoses. Her symptoms then followed all the typical clinical stages as depicted below:
As my mom's disease progressed, she experienced many of each stage of symptoms all at once. Her Chorea started out as shoulder shrugging constantly, then progressed to the inability to sit still or stand still without moving the upper body as well as the shoulders. My mom used to dance, dive, and do synchronized swimming, so her balance and gait difficulties were difficult for me to watch progress. Then she had a period where she would want to walk constantly, and called me up once and said proudly "I've lost another 5lbs!!"  She certainly DID NOT need to loose weight, but at that time I had no idea that was one of the symptoms of the middle stage. Her personality changes, irritability, and anxiety continued through all stages. When I visited her in August of 2014 her chorea, her balance and gait was markedly worse. At that point, she had fallen for the fourth time that year and had broken her arm for the third time. She also had slight dysphagia, which is difficulty or discomfort in swallowing.  The last thing I noticed when I spoke to her on the phone before she passed was her slurring of her words, also known as dysarthria.  She would have to pause and over enunciate and over articulate for me to understand what she was saying. That was extremely difficult for me to deal with. :(

My mom showed every single physical sign, and almost every single mental and emotional sign of HD by the time she passed.  Perhaps the one that was least noticeable to everyone except the caretakers she had for the last 3 year was self neglect.  She had always dealt with insomnia, but it was questioned after the fact whether or not the insomnia and depression led to her self neglect on purpose. That would go along with the lack of motivation and memory loss, although her memory loss wasn't as bad as I hear it could get. I hate to think that she purposely caused herself to die prematurely. :(

At this time, there is tons of research going on, trying to find the cure. Sadly, there wasn't much that could help my mom live a longer more fruitful life.

One of the things she did while she still could, was knit and create hats, blankets, scarves, and other handmade items. She would sell them at craft fairs, and donate 100% of the money earned to HDSA research. I am slowly going through all the boxes and totes she packed everything in, and will be selling as much as I can. I have created a Facebook page to post pictures of the items I'm selling. The ones she specifically made for HDSA research will be sold in the same manner, with 100% of that money going to the local research chapter.  Those items will be marked SPECIAL. You can find the page here:

Huntington's Disease is not a pleasant disease. Truthfully, none are, but this one is the creme de la creme because there is NO CURE. For now, stem cell research has provided with a few breakthroughs on coming close to eliminating some of the symptoms, but that is all that has been happening.