Huntington's Disease Society of America
Until 2009, our family had never heard of Huntington’s disease - but we’ve been quick-learners ever since.
For background, I married young and my son, Todd, was born to that marriage. After four years in an abusive relationship, the marriage ended. A year later, Todd and I married my childhood sweetheart, Tom. Several years later, Tom adopted Todd. Todd eventually married and had two children of his own. Ah, life was good!
Neither Todd nor I chose to maintain contact with my ex-husband (Todd’s biological father) and we had no contact with him or his family for over 25 years.
In 2008, at age 44, Todd developed a facial tic. It was more of a curiosity than a nuisance and his neurologist was unable to pin down the cause. By June of 2009, Todd developed mysterious muscle spasms. At that point, I contacted former in-laws and only then learned Todd’s biological father was in a care center, in the end stages of HD. I was told he was the only one in his family with HD and they didn’t know where the disease might have begun. With this new knowledge, Todd immediately was tested and in July of 2009 learned he was gene-positive and symptomatic with HD.
There are not many advantages to be found when living and dealing with HD; however, the disease progresses slowly enough that we DO have the time to make some plans, say the things that are important to be said, and to create memories. I highly encourage everyone to fill your memory banks while you can – whether your family deals with HD or not. We are so very thankful for each and every memory we continue to create along the way. So far, those moments have included a road-trip together to Glacier, Grand Tetons and Yellowstone National Parks. Last summer, we rented a cabin on a lake in northern Minnesota and spent a week fishing together. We enjoyed it so much we’re renting the same cabin again this year. Todd has spent 2-4 weeks with us each January for the past three years. This February, he and I flew to Portland, Oregon, to visit relatives for eight days. Don’t pass up an opportunity to create memories, no matter how large or small.
Todd and his family live five hours from us. He is Dr. Martha Nance’s patient at the Hennepin County Center of Excellence in Minneapolis and is involved in the CoQ-10 study, where he is seen for follow-up visits every six months. Because Todd no longer drives and our daughter-in-law works full-time, Tom and I travel to their home and take Todd to his appointments. Three to four times a year, we also do a weekend marathon of shopping/cooking/freezing. Each time, we prepare at least a dozen different entrees and desserts and package up 20-30 meals that can be reheated for easy meal preparation.
For me, education is power. The more I learn about HD and what to expect in the various stages, the less terrifying it becomes. Therefore, on the local level, Tom and I are very involved in our HD support group. I joined THe Sioux Valley Chapter Board of Directors in 2010, held the office of President for two years and am now its Vice-President. In that time, I helped plan and present our spring and fall educational seminars and serve on HD panels for in-service trainings. I’ve attended National Conventions in Minneapolis, Las Vegas and Jacksonville and eagerly look forward to Louisville’s in June. On the national level, I serve as a volunteer on the Field Task Force, which will report its findings to HDSA’s Board of Trustees this fall.
While I deeply regret it was HD that brought all of this about, I have met so many wonderful people since Todd’s diagnosis - none of whom I would likely have met otherwise. I can’t stress enough just how important it is to get involved!! When asked to participate, say YES - you can do SO much more than you think you can!! Every chapter and affilaite can use Board members, committee and fundraising volunteers, participants, advocates and speakers – even “hand-clappers” if you just can’t help in any other way.
Click here to find your local HDSA Chapter or Affiliate