Planning for HD chorea
can help you preserve
your independence
don p.
Care partner to a wife who had HD
Chapter President, Huntington’s Disease Society of America –
Michigan Chapter
“I realized we needed to get ahead of HD and wrestle it every day in a way that’s comprised of dignity and hope.”
I have always been interested in health and wellness, but I didn’t fully discover how important yoga was until my wife was diagnosed with Huntington’s disease (HD). I quickly saw the similarities between our experience with HD and the practice of yoga: the connection between the mind and body, finding hope in life’s ebbs and flows, and the importance of gaining support and knowledge from others. It’s a practice of complete honesty with yourself, and a reminder to take care of yourself—even when you’re charged the unimaginable task of caring for a partner with HD.
My introduction to HD was when my wife Kathy’s father passed away from the disease. Several years later, Kathy started exhibiting symptoms, but she was understandably in denial. We had barely been aware of HD, and suddenly she was living with it. It took some time for Kathy to accept her symptoms and receive an official diagnosis, so in the meantime, I worked to find a support system for when she was ready. Luckily, I discovered the Huntington’s Disease Society of America (HDSA) community to guide us through this challenging new stage.
“I needed to make sure that HD didn’t win every battle. You can beat it in a lot of ways if you figure out the correct support system and resources.”
Though Kathy has since passed, the community we built of friends, family, and HDSA helps me continue to find hope and keep her memory alive. I’ve found that you can’t run from HD. You have to turn and face it and lean into it. And if you try to lean into it alone, you’re going to get tired fast.
Today, I am a certified yoga instructor, and I host an annual yoga event to fundraise for HD research in addition to sitting on the Michigan chapter board of HDSA. Through my certification with Yoga Moves MS, I teach yoga to both people who are living with mobility impairments as well as others. Yoga continues to be my connection and my commitment to Kathy. It has continued to help me open up to those around me and accept support—even with the things I don’t ask for or don’t realize I need. While there were many lows, the moments of being able to speak authentically and honestly with people will always be the highs.
My advice to other HD care partners and families is to understand that a diagnosis is only a piece of the puzzle. The rest of the puzzle is how you support each other and accept support from others. Through a strong network, you can feel gratitude even in the most difficult moments.