Well, well, well. Where to start with such a complex and confusing disease, Huntington’s Disease. An illness that is both unpredictable and predictable at the same time. (I’ll get more into that later.) An illness that doesn’t only attack the patient but it’s family as well. This disease is the worst. It’s a hereditary, neurodegenerative disorder that strips you of who you once were. Symptoms include: chorea (uncontrollable movements), stuttering/communication problems, terrible balance, choking and difficulty swallowing, depression, followed by many other symptoms, frankly too many to name. Each person who has HD gets it differently (hence the unpredictable part.)
So, here is where the real story begins. Once upon a time fifteen years ago, from the stress of child-birth, at age 35, my mom started showing signs of HD. That would make me 5 years old at the time. I did not find out that my mom had this disease until I was around maybe 10. Now, at first this was simple to take in because I didn’t understand a single thing that was going on. It wasn’t until a few years later, when my mom got her car/license taken away that it really did sink in along with her being unemployed. When I was 13 I was brought into NYC to be a part of a HD family research program. It was basically therapy to see how I was handing day-to-day life with my mother being disabled. Let’s just say it was the most difficult session ever. I cried and cried and could hardly put into words how it made me feel. I went back for another session as a 16-year-old and things changed completely. I was much more secure than I ever was.
Now, the reason I said this disease is both predictable and unpredictable is because even though everyone gets different symptoms and different levels of severity, each person with HD will pass away due to complications, each will lose the person they once were and each will need a caregiver to take care of them until it is their time to go. It is such a terrible disease for everyone.
There is an awful turn to this disease, my mother can pass this on to my 15-year-old sister and I. We both have a 50/50 chance of inherited HD. I don’t know if anyone else has ever been faced this much curiosity, fear, and anxiety, but it’s not something I would want anyone to go through. There is testing, you can start when you’re 18. I refuse to get tested until I am a bit older(around 24) that way I know for sure I can handle a positive or negative read( more on that in another post.)
My sister and I didn’t really get so much of a mother-daughter experience, but when you have to mature quicker than most kids your age, you take what you’ve been given and make the best out of it. My mom, sister and I have a lot of fun. We laugh, joke around, watch tv and movies, snack together. It really is such a great relationship we have formed with her over the years. So now, here we are. I’m turning 20, my sister turning 16, and my mom is 50 and still going strong. It’s hard to watch someone so close to you slowly lose themselves. But seriously, with a family like mine, it’s very hard to get upset. My dad keeps us all together and happy and does everything in his power to keep the happiness running through our family. We are strong, and family is everything. Nothing can beat a strong bond, not even Huntington’s Disease.