Misunderstanding of Huntington's disease long road to walk alone

Christopher Gooding
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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.

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.

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.

Organizations: Huntington Society, Family Services

Geographic location: Pugwash, Toronto, Springhill Truro

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Recent comments

  • Cindy Monroe Shafer
    April 12, 2014 - 16:52

    Thanks for sharing .I pray y'all. My husband died a few years back but my daughter of 37 has HD..Her daddy got picked up by police thinking he was on drugs. He was but not what they accused him of. He was abused and missed treated they wouldn't believe us when we told them what he had..They wouldn't let us give him his meds..It was terrible..He was so scared..

  • noodle
    January 16, 2014 - 11:21

    Glad you shared your story and hopefully it'll help people understand your condition so they don't make assumptions. However, we should also consider that an individual who has been negatively impacted by alcoholism (i.e. the child or spouse of an alcoholic) may have an immediate reaction based on their fears and personal trauma and try not to judge them too harshly. The important thing is to create awareness of diseases like Huntington's so that people understand and react in an appropriate manner.

  • jr
    January 15, 2014 - 09:56

    I am glad to see this article. Too many people take thing at face value. I also find that this is an educational article as it will really make me think before assuming. I have a good friend with CP so I know what he has told me as far as how he has been treated at times. A little patience goes a long way and so does respect. Thank you John for your article and best wishes.

  • Denise Beeby Gray
    January 14, 2014 - 17:54

    I have been touched by this horrible diesese with my husband and his family.

  • Ruby Sorrell-Langille
    January 14, 2014 - 12:04

    These days nearly everyone takes a person for Granted on how they look,How they walk and etc, They they could only Stop and take a Good look at the person inside all this ,It wouldn't take them long to know what is Right Or wrong. I have an inherited bone Desease,At lease 5 or 6 in our last past years has been found in family members in 1 place or another. As a child I was called turkey,and various names. I had to accept it.I lived a some what normal life ,Thank God with out Pain. But Most people look for a perfect looking person. This is stupid.Its the inside person that counts.

  • Douglas Letcher
    January 14, 2014 - 10:22

    Yes I do understand as I suffer from Parkinsons .... The Key here is let everyoun around yo be aware of your disorder ... Yes there are good daus and bad .. Being out in the world is important ...Meany people with such disorders become reclosive because we are imbarsed . BBut I am lucky I have meany friends in our area and would not be mistaken as being intoxicated . My friend if you go to the Jym in Springhill No budy will make fun of you .. and exercise helps you to have a better quality of life ..regardless of health isues .. And I have found People once they know are very respectful and helpful and in my case make fun of me and you will be corrected by my friends and people in our comunities ...

    • exbluenoser
      January 14, 2014 - 11:18

      Doug, I didn,t know you had Parkinsons, so sorry to hear that. As you know, I worked at Beaton's when your grandmom was there & then at Sunset ARC. I watched as Huntingtons progressed in a very nice lady in there & then with a co-worker. They need so much patience & compassion. Almost her whole family ended up with HD. I am now living in AB. I wish you all the best, Doug. Ellen Cameron

  • Donna Rice
    January 14, 2014 - 10:02

    Thank you so much for Sharing!! So much Awareness is needed about this Horrendous Disease!! The Public needs to be Educated!! My Daughter also has HD. I totally understand the Frustrations you go through !! Take Care Neighbour We Live in Saint John, N.B.

  • Kim Rogers
    January 14, 2014 - 08:45

    This is a very helpful article. Thank-you for sharing it so we (the public) can learn more about this disease and be more considerate and not judgemental.