After five of his seven siblings were diagnosed with Huntington’s disease (HD) in the past seven years, Robert Robinson and his wife, Laura, sprang to action.
In an energetic quest, they became involved in the P.E.I. Chapter of Huntington Society of Canada and attended a national conference in Charlottetown last fall.
Now they are on a mission to spread their knowledge about this inherited brain disorder that touches the lives of one in every 1,000 Canadians.
“We’re doing two things — helping to educate other people so that they can support us as we deal with this family disease and gathering information so that we’ll be aware of the symptoms should they manifest themselves (in our immediate family),” say the Robinsons who are taking part in the Huntington Society of Canada’s P.E.I. Indy Go-Cart Challenge in Burlington on Saturday, June 13, to raise awareness and funds to battle this disease.
HD is an inherited brain disorder that affects both the mind and body. Symptoms can include uncontrollable jerking movements, slurred speech and mental and emotional deterioration. These signs usually begin to appear in the prime of life, between 30 and 45 years of age.
“Treatment can reduce the severity of the symptoms but to date no cure is available,” says Laura.
Over the course of the disease, which runs between 10 and 25 years, HD leads to total incapacitation and death, states information provided by the chapter.
In his research, Robert learned that his five diagnosed siblings are at different levels in their symptoms.
“My sister, Marie Laviolette, who has the most advanced case, started experiencing irritableness and forgetfulness seven years ago. She thought it was menopause, but the symptoms didn’t go away when they were treated.
“Today she’s facing mobility issues and is no longer working,” says Robert.
His brother, John, a mechanical engineer, also had to quit working because he lost his ability to organize his day.
Of the three remaining diagnosed siblings, another sister also had to give up her job.
“So, as you can see, this inherited genetic disorder has created some questions for us,” says Robert.
One of the first issues that he faced was whether to get tested or continue along with a life that included being a husband, father, farmer, contactor and man of faith. He chose the latter path.
“Both my wife and I had lost a spouse to cancer at the age of 36 and I feel at this point that nothing is going to change the direction of my life.
“I’d rather live my life without worrying about the way it’s going to end. It keeps me from enjoying the present — things like finding the 35 cows that jumped the fence last week or planning a dream vacation to Cape Breton with Laura on a motorcycle or spending time with our children,” he says.
Together the couple’s blended family adds up to 13.
“Laura had six (from her first marriage) I had three and we had four together. We have a busy life,” he says.
Still, he hasn’t ruled out the idea of getting tested in the future.
“If I feel there’s something there, I will. But I feel optimistic.”
Whatever happens, he believes his faith will pull him through. Huntington’s has made me look at the purpose of my life and what I’m living for. It has made me realize that we can have an impact on people in a positive way, whether we have the disease or not.”
At a glance
What: Huntington Society of Canada’s P.E.I. Indy Go-Cart Challenge.
When: Saturday, June 13, 10 a.m.-12 noon.
Where: Burlington Amusement Park.
To participate, contact Stephen Hurst at (902) 888-3013 or by email at [email protected]
© The Guardian 2009