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A terminal illness isn’t a diagnosis anyone wants to hear, but a Nova Scotia couple are speaking out about how that news was delivered.
After 11 years of waiting to confirm what he already feared, Don Hutton was diagnosed with ALS at 57 a year ago.
“I just thought, ‘My life’s over,'” said Hutton. “You’ve got ALS. It is 100 per cent fatal.”
ALS (amyotrophic lateral sclerosis), is a disease that causes people to gradually become paralyzed because the brain can no longer communicate with the body’s muscles. It is also known as Lou Gehrig’s disease.
The ALS Society of Canada says most people with ALS die within two to five years after diagnosis.
Hutton has watched family members suffer and die from the disease, but he was routinely told by the medical community it wasn’t that. He was even diagnosed incorrectly with other minor conditions.
Hutton’s wife, Jennifer, has become an outspoken advocate for his care, taking to TikTok to share her rants.
“She’s my hero,” said Don Hutton. “She’s everything to me. Everything. I thank God for her.”
Jennifer Hutton was out of province on business when her husband received the diagnosis.
“I would like to ensure that nobody else should have to go to a doctor’s appointment and get diagnosed with a terminal illness without a loved one sitting next to them,” she said.
Nova Scotia Health spokesperson Brendan Elliott said doctors will usually ask a patient to have a support person present when they are about to present a serious diagnosis.
But the Huttons say that didn’t happen in their case.
As well, they say Don was given a brochure on medical assistance in dying (MAID) at the same appointment he received his diagnosis.
Elliott said the purpose of including MAID in these discussions is to ensure the patient makes an informed decision about their health care and is aware of all possible end-of-life options.
“The timing of these conversations should be tailored to the individual patient and delivered with great care and empathy,” said Elliott.
Today, Don is active. He cleans the family pool, walks the dog and works part-time.
While they’re grateful Don is doing so well, the Huttons worry about the impact delayed testing can have on a patient.
The Huttons are advocating for more genetic testing of the disease, especially for those with a family history of having it.
The ALS Society of Canada says 90 per cent of cases are in people where there is no family history.
“Genetic testing is not routinely done on all patients with suspected ALS but on appropriately chosen patients,” said Elliott.
“It is worth noting there are currently no approved medications or treatments based on genetic mutations. Therefore, this doesn’t necessarily impact the clinical care of the patient. However, it could have implications for family members, and it could make the patient eligible for a particular clinical trial.”
Nova Scotia has shortest wait times for diagnosing ALS
According to a 2018 study published in the Canadian Journal of Neurological Sciences, Nova Scotia has the shortest wait time for a diagnosis at 15.1 months. Saskatchewan had the longest: 27 months.
As the Huttons both advocate for changes to the health-care system, Don said he’s focused on living each day to the fullest.
“I will do everything I can to fight it to the day that I pass, but until that day, I enjoy life,” he said.