Huntington’s and Me

I don’t have a lot of regrets in life but one would be not taking the chance to get to know any of my grandparents. I was only 14 when my last grandparent had passed away. During those 14 years, my family was busy raising their girls and always figured there would be more time to get together. At holidays when we celebrated I was young and wanted to play with my cousins. If I only knew then that my time was limited, I could have spent more time on my grandparent’s laps; cherishing their hugs and kisses; telling them about my life and asking about theirs. But you can’t change the past and I just have to believe they knew that happy playful girl loved them.

But today’s blog is about a certain set of grandparents, my paternal side, Grandma & Grandpa Sweitzer. The ugly truth on this side…my family has Huntington’s.

“Huntington's disease (HD) is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and dementia.”

When I was little I never could grasp what that meant. I always knew my paternal grandfather was different. He was diagnosed in the late 70’s, several years before I was born. So I don’t have any memories of him before the disease. I remember asking what was wrong with him. I was 12 years old when he died and I formed my own thoughts when I was told he died from complications from Huntington’s chorea. What I heard was Huntington’s Korea, like in the country and I really thought he had caught something in Korea. I had no idea this was a genetic disease and I certainly didn’t know that others in my family might one day be affected with it.

And what saddens me more is I remember gathering at my Aunt’s house for holidays and seeing my grandpa sitting in “his chair.” He’d always be in roughly the same spot. His limbs were twitchy and his jerky movements made me nervous as a kid. I remember he had trouble speaking and I couldn’t understand why. I remember being scared to hug him and I can’t ever recall having a conversation with him. Regrets, regrets, regrets.

Now, as an adult I can see how awful our family situation was. My Grandma had the responsibility of caring for her husband full-time when she should have been able to enjoy her golden years. I realize that I never got the opportunity to know my Grandpa. And though I never discussed it with my father, it had to be hard on him as his son and as my dad. Not only did the man he knew change before his very eyes but now his own children would never know the man his father once was.

Now each year my family raises money for HD with Team Hope-Walk for a Cure. I would really appreciate your donation. Any amount could help me, my family and millions of others that are diagnosed with HD. Please check out our family website at:

http://www.firstgiving.com/fundraiser/teamsweitzer/8th-annual-team-hope-walk-for-a-cure-2012

Facts about Huntington's Disease

• HD is an inherited brain disorder.

• Huntington's Disease typically begins in mid-life, between the ages of 30 and 45, though onset may occur as early as the age of two or as late as the 70s.

• Children who develop the juvenile form of the disease rarely live to adulthood.

• Early symptoms of Huntington's Disease may affect cognitive ability or mobility and include depression, mood swings, forgetfulness, speech impairment, clumsiness, involuntary twitching and lack of coordination. Symptoms of HD can differ from person to person, even for members from the same family.

• HD slowly diminishes the affected individual’s ability to walk, think, talk and reason.

• As the disease progresses, concentration and short term memory diminish and involuntary movements of the head, trunk and limbs increase.

• Walking, speaking and swallowing abilities deteriorate.

• Eventually, a person with HD becomes totally dependent upon others for his or her care.

• Huntington's Disease usually progresses over a 10-25 year period. Death follows from complications such as choking, infection or heart failure.

• There is, at present, no effective treatment or cure. However, it is possible to treat some of the effects, such as depression and involuntary movements with various medications.

• HD is caused by a dominant gene which causes certain brain cells to deteriorate.

• Each child of a person with Huntington's Disease has a 50% chance of inheriting the HD disease causing gene.

• Everyone who carries the HD disease causing gene will develop HD at some point in their lifetime, unless they die of other causes prior to developing signs and symptoms.

• Huntington's Disease profoundly affects the lives of entire families: emotionally, socially and economically