Updated: Nov 9, 2021
This is our first post (in which we envision becoming a series) to share the intricacies of what LIVING Huntington's disease was like for John and I.
What is Huntington’s Disease (HD)? If one were to Google it, the medical definition provides the explanation of the neurological components of the disease, how it is an inherited disease and describes the mutation of the Huntington gene (that we all carry) and shares the most common symptoms in the beginning and throughout the progression of the disease.
Most people, unless they are personally affected by a disease, are empathetic yet do not have a true comprehension of what someone with the actual disease, or what the loved ones of that person endures. I want to provide a series of blogs to share with you as far as my story on what it is like to be LIVING Huntington’s disease.
Huntington’s disease is a progressive, cruel, invading killer that shows no mercy as takes its time robbing the victim ever so slowly, of his or her ability to live life.
I’m Darlene Gray. I was John Paul Jr.’s significant other, partner, “person”, whichever term is appropriate as I wore a lot of hats over the years and of course, became his caregiver and home health care facility manager as the disease progressed. When I met John back in the late 90s, he was a strong, articulate, accomplished race car driver. Tall, dark and handsome, but what really struck the resonating chord within me was his gentle and kind demeaner. He had the biggest heart, always cared about others, and never had a mean word to say about anyone.
I can’t quite recall which race track we were at - I only remember one night John sharing that he was at risk for Huntington’s Disease. Before that day, I had never heard of Huntington’s disease. He explained it was hereditary and then went on to tell me that his mother and grandmother died of it. If I remember correctly, he shared that his younger sister was showing symptoms of having it (she did succumb to the disease several years before John). He continued to share that he had a 50/50 chance of inheriting the disease. I remember that big ol’ grin on his face as he said “those are pretty good odds!”
I asked my sister Dyna if she knew anything about Huntington’s disease. At the time she was an undergrad working on a chemistry degree. She then began researching HD. I don’t recall her exact words but I remember her stating that it was a horrific disease. We (Dyna and I) had family members who died of cancer and I recall Dyna mentioning how cruel cancer was as it ravaged your body – and that Huntington’s disease not only annihilates your body’s ability to do what it was made to do, but it simultaneously destroys your brain in a slow, barbarous way. She could not fathom many things that would be considered worse. That was the catalyst that changed her focus. She wanted to do what she could to help cure this merciless disease and that is how she ended up with a PhD in Biochemistry from UCLA with a focus on HD.
I remember one day as John and I were driving back from Daytona, I was just watching him to see if I noticed any involuntary movements (which is part of HD). If I observed a twitch, I would remind myself that I can be an extremely fidgety person – tapping my fingers, moving my leg, etc. and I was not at risk for such a disease and try to pass it off as such. Yet I remember my heart would skip a beat anytime I observed any twitch no matter how minute. I remember praying nightly that John would be spared from this disease.
John was working a vehicle launch – a driving program – I can’t remember exactly which it was but one of his driver friends reached out to me. He shared a story that made me realize, John most likely, did lose the odds (when it came to 50/50) and he did indeed have HD. I could feel my heart shatter.
My sister, guided us to UCLA and their Huntington's Disease Center of Excellence and we were fortunate enough to be connected with Dr. Susan Perlman, M.D., Clinical Professor of Neurology; Director, UCLA Huntington’s Disease Center. From that day forward John and Dr. Perlman became teammates. Their common goal was to do all they could to keep John in a "holding pattern" (as he referred to it) and raise awareness and funds to put an end, once and for all to this cruel and merciless disease.
I will continue to blog the journey that John and I embarked upon to help those of you who are going through this, or those of you who are not, to gain a better understanding of HD and why we need to raise the funds for research to end this devastating disease. You may not know someone with HD, but most likely you do know or care about someone with Alzheimer’s disease (AD) or Parkinson’s disease. (PD). Unbeknownst to most, if the cure for HD is discovered, it will undoubtedly lead to the cure of AD and PD at the same time.