“Once you choose hope, anything is possible.” - Christopher Reeve
Flyte Fitness Contributor Taylor Hahn wrote this week’s blog.
16 months ago, my mom passed from Huntington’s disease at the age of 61. Prior to her death, I watched my mother’s body and mind slowly deteriorate to make her a shell of the person I had known my whole life. This was the hardest thing I have ever gone through.
Huntington’s disease (HD), which combines symptoms of Alzheimer’s, ALS, and Parkinson’s disease, has been described as the worst disease known to man, and I have a 50 percent chance of inheriting it. HD has not missed a generation in my family as far back as we know, so now my father waits to see which of his children – my two brothers and me – will fall victim.
Watching my mom struggle taught me to be strong, independent, and carefree at a very young age. I believe that in order to manage the looming 50-50 chance that I develop this horrible disease, I will need to maintain a heathy lifestyle that includes exercise to help me both physically and mentally.
Some Background on HD
There is no known cure for HD. It is a hereditary disease that deteriorates nerve cells in the brain, and ultimately compromises one’s functional abilities, cognitive skills, and personal relationships. Involuntary jerking movements, known as chorea, along with weakened muscles, and impaired balance are physical hallmarks of HD. Cognitive impairments include a lack of impulse control, difficulty focusing, and an inability to communicate effectively. Additionally, fatigue, drastic reduction in energy, and weight loss are common.
The Benefits of Fitness
I would be lying if I said thinking about inheriting the disease that took away my mother was not terrifying. Some days it’s the only thing to consume my mind and other times I go weeks without considering my fate. The truth is my status of inheriting Huntington’s is simply the flip of a coin, so which will it be: heads or tails?
Instead of allowing myself to sulk, I choose to work out daily and eat right. Leaning on fitness helps dilute the thoughts of the unknown and helps me remain very optimistic. Yoga, running, and weightlifting are my go-to workouts because they make me feel invincible! Since I am only 22 years old, I do not feel it is the right time to discover my HD fate. Whether or not I am the one in 10,000 that inherits this disease, I am confident fitness will help enhance my quality of life and even delay the symptoms. By choosing to respect and cherish my body now, I have hope it will return the favor in the future.
An Unknown Future
As I mentioned, I do not know my HD fate. There is a painful process to learn it – if I choose to do so. After months of genetic counseling, various personal tests would be conducted prior to the final blood draw which would reveal my status. These personal tests range across motor, sensory, and psychiatric categories. The reason for all this “pre-test testing” is that if one’s emotional state is deemed incompetent, his or her testing process will be withheld for possible fear of self-harm. Another important factor to consider before testing is the possibility of losing health and life insurance with a positive result because of current policies in place. Testing is a very personal decision, but when and if I choose to take the leap there are many pros and cons to be considered.
If I choose to get tested, I can never take back the question mark of not knowing my status. It also makes more real to my family the question of whom to take care of next. Huntington’s is a vicious cycle that my family will face strongly together. For now, I will use a healthy and fit lifestyle as my outlet to prepare my body for the future. I truly hope one day there will be a cure to help those who may suffer in the future.
To learn more about Huntington’s disease or to contribute to research, visit Huntington’s Disease Society of America.
We’d love to hear from you. What are your thoughts about using fitness to cope with Huntington’s disease? Comment below or on our Facebook page or tweet us at @flytefitness.
Be Flyte Fit,
Contributing Writer, Flyte Fitness
Certified Group Instructor & Personal Trainer
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