One certainty in life is that there is no guarantee on tomorrow. For many, this realization can be unsettling at times but doesn’t interfere with their day-to-day. For those at risk for Huntington’s Disease (“HD”) this reality is amplified, influencing career, family planning, financial planning and lifestyle decisions. As HD most frequently develops around age 40, many at-risk young adults are faced with major life decisions early in life, such as planning your own caretaking situations. These pressures, added to the pressures all young adults are faced with, can incapacitate even the strongest-willed.
Generally, at-risk people have witnessed the course of the disease in a parent. HD families become accustomed to ER visits due to falls and feeding accidents. Family morale is infected by the behavioral swings and depression of the sick. Life becomes completely different. Then, after becoming familiar with the sights and sounds of HD symptoms, at-risk people worry that any twitch, stutter or headache is the onset of the disease that will one day overcome them. The pressure and feeling of hopelessness is earth-shattering.
When a person tests positive for HD, they’re likely in the beginning stages of the disease. At that point, the person knows their days are number to 10-15 years, with a very low quality of life in the second half of that term. For anyone without a support system, leading a productive and meaningful life under these circumstances is not easy. Purchasing life insurance or extended care services after diagnosis is near impossible, compounding the gloom of a shortened life with financial distress.
This is why we do what we do. Being hopeless and helpless can be more debilitating than the disease itself, so we have focused our energy on positivity. We think we have the advantage on HD as we’re attacking on two fronts! Our awareness and fundraising efforts help to educate others and finance specialty research projects around the world. But we also have a unique and exciting movement centered on fitness, nutrition and pushing the limit. A strict diet and fitness regime once set a man’s Parkinson’s Disease into remission – maybe that’s the answer! The way we see it, it’s just a contest between us and the scientists. We have our blood, sweat and tears and they have their microscopes and test tubes. Who will beat HD first?!
For more on Living at Risk check out http://www.hdsa.org/living-with-huntingtons/family-care/living-at-risk.html