Family coping with Huntington’s disease

Cory Hurley cory.hurley@tc.tc
Published on June 24, 2014
Richard Wheeler is photographed with his wife Ruby at their home in Pasadena Monday. Ruby was diagnosed with Huntington’s disease in 2012.
Star photo by Geraldine Brophy

As a career police officer, Richard Wheeler understands how precious life is. The sergeant puts his life on the line protecting the streets of Corner Brook as a member of the Royal Newfoundland Constabulary. It is something he signed up for.

Wheeler, the man beyond the badge, also knows how precious life is. He is a husband and father, with a family he also wants to make sure is safe. There was always a chance, however, he may not be able to that.

Ruby, his wife, was officially diagnosed with Huntington’s disease in 2012. Both her father Thomas Barker of Coachman’s Cove on the Baie Verte Peninsula and sister Theresa had the genetic disease and died from it. Her brother Rick has also been diagnosed with the degenerative disease of the brain’s nerve cells.

A person has about a 50 per cent chance of inheriting the disease, so Ruby was always very much aware she could get it. Like most people who do, she began experiencing signs and symptoms of the disease in her 40s. The genetic testing about two years ago confirmed what they had suspected.

Huntington’s disease has a broad impact on a person’s functional abilities and usually results in mobility, cognitive and psychiatric disorders. Ruby had been experiencing more frequent accidents, such as stumbling or cutting herself when preparing meals.

Nonetheless, the diagnosis was still a shock.

“She finds it difficult to talk about it because we know what the future holds for us without a cure,” Rich said. Ruby wanted to do an interview for the story, but was overcome with emotion.

“Huntington’s has been described like having Alzheimer’s, Parkinson’s and Schizophrenia all in one disease. It is a fatal brain disorder, no other way to say it.”

So, all of a sudden, life became so much more precious for the Wheelers. Ruby was a store clerk at Shopper’s Drug Mart, but has had to retire far earlier than anticipated. The couple had a plan for retirement, which has since been expedited to the present.

“You live life to the fullest,” Rich said. “You live each day as if it was your last.”

The life expectancy for the disease is about 20 years. Ruby is now 49, already seeing the disease progress to the point she is limited in what she can do.

Ruby strives to do as much as she can and, through her family and friends, gets the help she needs to keep doing so. She has lost a lot of weight and has trouble sleeping, she is unable to drive and has problems concentrating on some tasks.

There is no cure for the disease, but the symptoms are treated as best as possible. Exercise is encouraged and there is medication for the depression. She meets with her family doctor regularly and attends a Huntington’s clinic in St. John’s, where she sees a specialist.

It is advancements in research where the Wheelers would like to see improvements. Combined with a supportive network, those would be the benefits of a local chapter of the Huntington Society of Canada. Rich has been working with the national organization in hopes of creating one. If things go as planned, it could come to fruition in the coming months.

A part of that would be to create awareness through various events, but also to hold meetings in which people impacted and their families would be able to attend.

The Wheelers are aware there are others with the disease in the area, but have not met them. There is also the likelihood there are others who suffer in silence or within their own immediate support network.

The Wheelers are planning a walk July 5 from Baie Verte to Coachman’s Cove.

Their story and a lot of information about the disease is available through “Ruby’s Battle” on Facebook, and Rich can also be contacted by anybody looking for more information about the forming of the local chapter by calling 639-2452.

Another coin flip

The Wheelers have had a lot to be grateful for in recent years, watching their son Jordan graduate from Memorial University with a physical education degree.

The pride is apparent in his educational accomplishment, but there is a lot of worry from his parents pertaining to his future. Once again, it becomes a flip of a coin whether he will get the disease.

“He is mature enough now where he understands the disease and what it means for him,” Rich said. “He has shown no signs yet.

“When the day comes, if he decides to undergo the genetic testing, we will support him either way.”