Misunderstanding of Huntington's disease long road to walk alone

Christopher Gooding cgooding@citizenrecord.ca
Published on January 13, 2014

It’s been a long road for John Gray, whose challenges with Huntington’s disease outside of the debilitating condition has followed him from his hometown of Pugwash to Toronto, Truro and Springhill. With his significant other, Cindy MacDonald of Wentworth, however, he’s hoping a little understanding will help as his life slows down against his will.

Christopher Goooding photo

SPRINGHILL – For anyone who suffers from a neurological disorder, this might be a familiar tale. For those who don’t, it’s an opportunity to learn a little bit about the stigma they would face if their body and mind were slowly being taken away from them.

Taking his time to answer questions, John Gray’s gaze goes adrift then comes back. Then silence. His eyes are somewhat blurry, his speech staggers as his body sways more often than its staying still.

It would be a misunderstanding if you thought Gray had one too many at the pub, and that misunderstanding has followed him most of his adult life. At 19 Gray was diagnosed with Huntington’s disease, a hereditary and progressive disorder that’s slowly attacking his neurons. Hailing from Pugwash, Gray was living in Toronto when he learned he would follow in his father’s footsteps with the disease. At first it was just his balance that was off, eventually forcing him to stop working in construction and take on another career. Later in life, his speech began to slur.

“The neurons in the brain die,” Gray said. “Medication helps with the movement and talking, but it doesn’t stop it.”

Now 42 and living in Springhill, Gray says his father was 59 when he died from complications caused by Huntington’s.

“I have ten, maybe fifteen years, hopefully.”

During that time, Gray is hoping for a little understanding. His problems aren’t specific to any one community, but the most recent misunderstanding has frustrated him more than ever before. At a recent outing to buy supper for his kids, police arrived under the assumption Gray was intoxicated. He knew the police were there for him, according to Gray, but there wasn’t much he could do to convince police he wasn’t under the influence and was later driven home after he wasn’t able to offer a name of someone’s whose care he could be handed over to, leaving his vehicle behind at the restaurant for him to fetch later.  

“Most people anywhere I walk – cashiers, whoever – think I’m drunk because of the way I walk, my slurred speech… I know [police] have a job to do but on the other hand I can’t go anywhere. I can’t go to the gym to exercise. I can’t walk. There’s so many times I’ve been brought home and it’s embarrassing. I have a right to walk. I’m not sick of the people, I’m sick of the harassment.”

Gray’s story is not unfamiliar to those who suffer from Huntington’s disease, or Multiple Sclerosis, Cerebral Palsy or Parkinson’s disease for that matter, says the Director of Family Services for the Huntington Society of Canada, and overcoming misunderstanding is a partnership between the public and the patient.

“For the people with Huntington’s, we tell them to plan ahead. Communication can be a challenge so have a support network” Maribeth Meijer said.

The Huntington Society offers identification cards, explaining common symptoms and an emergency contact information that sufferers can hand out when confronted with a situation where communication is difficult.

On Gray’s part, he said he did have cards made when he was living in Truro.

“I had over a thousand printed,” Gray said. “When I moved here, I had none left. I had passed them all out.”

He’ since been in contact with the provincial arm of Huntington’s Society and they are shipping him more cards.

Having an emergency contact, Meijer said, is always important. Besides physical impairments, Huntington can make it difficult for people to think. Sometimes, when they seem confused, it’s a case of them needing a moment to process information, leading to frustration and, unfortunately, Huntington can cause impulses making it hard to stay calm.

“For the public, the first piece is don’t assume. Many diseases imitate intoxication,” Meijer said. “Be patient with the situation a little bit. Understand that the person who has the disease has experienced a fair amount of stigma. If I, as a business member, react with fear or assumption the person is intoxicated, I can escalate the situation.”

Many situations can be resolved or deescalated with a little bit of compassion, making everyone part of the solution, Meijer said.

Not making assumptions, giving the person time to respond, and keeping questions clear and concise are first-steps towards understanding. And sometimes ‘dead air’ – when they’re not answering – is them processing information. By giving the person a few more seconds to respond instead of answering another question is all it takes to achieve understanding. 

Which is all Gray, and many people like him, have been asking for.

 

Did you know?

• Huntington's disease usually develop between ages 30 and 50, but they can appear as early as age 2 or as late as 80. 

• Familiar symptoms of Huntington's disease is uncontrolled movement of the arms, legs, head, face and upper body.

• Huntington's disease also causes a decline in thinking and reasoning skills, including memory, concentration, judgment and ability to plan and organize.