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.

Wednesday, July 29, 2015

Round 1 complete, Round 2 is a go!

I'm not sure what to say. I completed round 1 of my 21 Day Fix. However, I didn't complete all of the workouts as scheduled. I actually didn't start the workouts until the last 6 days of the fix. So many things kept me procrastinating; my son was on a trip to Costa Rica, and I was vigilant on my phone for when he messaged me; I got sick with a cold; and the worst part, I had the mother of all cramps and the heaviest flow of the year. Yea, I know. Excuses. I am ashamed of myself.


I managed to loose 3lbs and 3.5 inches DESPITE all my excuses. I stuck to the shakes and followed the meal plan and portion guide almost to a "T."

So here are my stats:

Before 7/6/15

  • CHEST 41"
  • ARMS 14"
  • WAIST 41.5"
  • HIPS 47.5"
  • THIGHS 24"
  • WEIGHT 208.4lbs

After 7/26/15

  • CHEST 41"
  • ARMS 13.5"
  • WAIST 41"
  • HIPS 45.5"
  • THIGHS 24"
  • TOTAL INCHES 202.5"
  • WEIGHT 205.4lbs

So not bad, considering my struggles. Hooray!!!  (sorry, no pictures right now. I'm waiting until I'm done with round 2.)

I jumped right into another round of 21 Day Fix on Monday, 7/27/15.  So today marks day #3 of round 2. Here's what I can tell you right now:

I DISLIKE leg day (aka Lower Fix). I absolutely LOVE arm day (aka Upper Fix). Total body cardio is, well, it is what it is, lol. BUT, this week so far, I've been able to complete more of each round of the workouts than I did last week being my first week. When I started last Monday, 7/20/15, with the Total Body Cardio, I could barely walk for the next 4 days. So, arm day was amazing. I had no issues with doing the arms, but my legs were protesting so much, the first two days I ended up sleeping away my afternoon after the workout and my shake. That probably wasn't a good idea. I could be doing the workouts before bed, but from past experience, I've found working out in the morning helped me get through the rest of the day. It also gives me more motivation to wake up early. I'm a night owl, so this is going to take a while to get me to bed earlier to wake up earlier. Especially during the summer! Anyway- tomorrow is Pilates Fix, and I'm looking forward to doing that. It is one of the exercise programs I've always wanted to try.  I completely skipped that last week because of how much pain my legs were in. I also skipped Cardio fix on Friday, the dirty 30 on Saturday, but I did the yoga on Sunday. I've always loved yoga!! 

I'm glad that this week my muscles are not protesting as much! I can actually walk normal, lol. I looked like a sad penguin, hobbling about most of last week.  Right now, my abdominal muscles are feeling it, my thighs and shoulders as well, and my back. I really need the muscles in my back to get stronger. I tend to slouch. A lot. :(

So in addition to my 21 day fix, round 2, I am participating in another challenge that will start August 1st, and run the entire month. I can't wait to see what this brings me!! I can't wait to compare my side by side before and after pictures either! I'll catch up with everyone in another two weeks, when I'm halfway through the second round!