How I Learned If I Would Die From Huntington’s Disease 2016-05-25
“You never know how strong you are until being strong is the only choice you have.” - Bob Marley
In March, I began my internship at Flyte Fitness as a contributing writer to this blog. My first blog article revealed how I used fitness to cope with a horrible disease. I wrote about my mom’s passing away only a year and a half ago, after battling a devastating hereditary neurological disease known as Huntington’s. Losing a parent was the hardest test of strength I had endured thus far.
Writing my first blog and receiving such positive feedback from my family and friends gave me the confidence to make the decision of a lifetime: to undergo testing in order to determine the likelihood of my dying from Huntington’s disease.
The Horrors of Huntington’s Disease
Huntington’s disease (HD) is a neurological disease that compromises one’s functional abilities, cognitive skills, and personal relationships. The primary physical symptom of HD is chorea, which involves involuntary jerking movements. Additional symptoms include reduced impulse control, difficulty focusing, behavioral issues, and an inability to communicate effectively.
This brutal disease leads gradually to the deterioration of all cognitive and physical abilities, destroying not only the patient but her friends and family as well. And, as if the disease couldn’t get any worse, my brothers and I each have a 50 percent chance of inheriting the very illness that took away our mom.
Beginning the Testing Process
I come from a family that does not approve of the testing process for Huntington’s. My family believes there is no need to face the harsh truth until medication for the mental and physical symptoms is absolutely necessary. While I greatly respect the opinions of my family members, I have never shared this belief.
I knew that I wanted to undergo the test, and I had many self-imposed conditions that had to be met prior to initiating the testing process. These prerequisites included waiting until my mom passed away, grieving her loss properly, and finding an anonymous testing site.
Once those criteria were met, I wanted to keep my testing plans a secret from my friends and family. I believed that if my family members knew I was planning to be tested, they would try to dissuade me from doing it. After all, at 22 years of age, I’m the youngest… the baby of the family. Everyone looks out for me. Plus, I did not want to make everyone panic with me while waiting three months for the results. That’s right… once someone is tested, it takes a long quarter of a year to learn the results. The positive feedback on my personal article written for the Flyte Fitness blog gave me the courage to begin my testing process for Huntington’s, with only my fiancée’s and best friend’s knowledge and support.
The Dreaded Drive
As I mentioned before, I knew I needed to test anonymously. If I tested positive on the record, no health or life insurance provider would ever accept me. I began the testing process using a pseudonym and I settled on an anonymous testing site outside of Chicago, about one-and-a-half hours from my home in Wisconsin. While that may not seem very far away, I had to have many pre-testing appointments there, including multiple genetic counseling sessions, a psychiatric evaluation, a neurological evaluation, a blood draw, and, ultimately, a results consultation.
All of these meetings had to take place on separate dates. Thankfully, my fiancée insisted on driving me to every appointment, while my best friend accompanied us for moral support. While driving to these appointments, my mind and body would go stir crazy. I constantly obsessed about whether my foot was twitching, or whether I could keep my hand from shaking. Also, it didn’t help that I barely passed the mental part of the neuro exam. I mean, who can really remember 15 words and repeat them after five minutes, plus draw geometric shapes and repeat lengthy sentences word-for-word all while under enormous stress?
As the process continued, there were days on which I thought the result would definitely be negative, and days on which I was absolutely convinced that the disease was my future. It was a roller coaster of emotions day in and day out.
The Waiting Game
After the final blood draw on April 1st [April Fool’s Day]. I had to wait six weeks before learning the results… plus, I still had to drive back to Chicago to hear them in person. In total, this process took three long months, plenty of time to make me feel like a hot mess. The waiting period evoked countless dark thoughts and terrifying nightmares. I was leaning on the only two people in the world who knew what I was going through, yet still remaining cautiously optimistic.
What got me through the tortuous waiting period was the strength, maturity, and determination my mother instilled in me. Testing is such a personal decision, and in no way am I suggesting that everyone who is at risk should do it. When it comes down to it, you have to do what is right for your life, and, ultimately, it was time to face my future.
Learning My Fate
My final appointment on May 13th [Friday the 13th] could not come fast enough. I needed to know what side of the coin my future faced. The last drive to Chicago was torture, and even worse was waiting in the doctor’s office.
My mind could not stop racing. I tried my best to remind myself that if it was a positive result, I was going to share my story more and begin clinical trials for research. I kept replaying a statement my psychiatrist told me, “Taylor, this disease is not a death sentence, and the result will only help you plan for the future. So if you want to go rock climbing don’t wait a year, just go tomorrow.”
After what seemed like the longest introduction in the history of the world, the doctor braced me for my test result. Then, he told me that I tested negative. It was surreal. I was negative!
I left the hospital knowing I would never inherit Huntington’s. You would think that would make me jump for joy, but in reality it was bittersweet. Just because I know that I am in the clear doesn’t mean that my family or fellow members of the HD community will be so lucky… and that’s devastating.
I have already felt a few hints of guilt for not having to endure the pain of those who will be stricken with the disease, like my mom. When I informed my family, as I had suspected, they didn’t agree with my decision to test. However, they were supportive and ecstatic at the result. Each of my family members told me that they would have tried to talk me out of it because they always want to protect the baby of the family. They thanked me for saving them three months of sleepless nights waiting for the results.
I am very glad I made the leap to be tested, and now I beginning to cope with the result.
In the days after learning my result, I asked myself, “Where do I go from here?” I had already prepared for Huntington’s to be my future, and now it is difficult to realize it isn’t. I am trying to understand that my journey with HD is not over, and I still have a story to tell. I vow to continue to advocate for my Huntington’s community and my family. I will continue my annual bowling event to honor my mom, raise money for research, and participate in more HD fundraisers. I will not feel satisfied until there is a cure. The testing process put into perspective just how delicate life truly is, so I recommend that everyone go rock-climbing and never wait for the “perfect” moment.
It all remains a blur and feels like a dream, but it is a journey I will never forget. I fully believe my mom gave me the strength, determination, and confidence to complete the testing process. I cannot thank my fiancée and best friend enough for putting up with my crazy self through everything. I am still in disbelief of how the coin did not flip to the wrong side, but one thing is certain: I will never stop fighting for my family and HD community.
While I may not inherit Huntington’s, my battle against this horrid disease has just begun. To learn more about Huntington’s disease or to contribute to research, please visit Huntington’s Disease Society of America.
Be Flyte Fit,
Contributing Writer, Flyte Fitness
Certified Group Instructor & Personal Trainer
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