Nova Scotia Couple Upset Over 11 Year Wait For Als Diagnosis

After waiting 11 years to confirm what he already feared, Don Hutton was diagnosed with ALS at age 57 a year ago. “I just thought, ‘My life is over,’” Hutton said. “You have ALS. It’s 100 percent fatal.” ALS (amyotrophic lateral sclerosis), is a disease that causes people to become progressively 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 of diagnosis. The Huttons celebrate their wedding anniversary on a flight to ALS clinical trials in Montreal in this undated photo. (Jennifer Hutton) Hutton has watched family members suffer and die from the disease, but the medical community usually told him it wasn’t that. In fact, he was misdiagnosed with other minor ailments. Hutton’s wife Jennifer has become an outspoken advocate for his care, taking to TikTok to share her rants. “He’s my hero,” Don Hutton said. “She’s everything to me. Everything. I thank God for her.” Jennifer Hutton was out of the province on business when her husband received the diagnosis. “I want to make sure no one else has to go to a doctor’s appointment and be diagnosed with a terminal illness without a loved one sitting next to them,” she said. Nova Scotia Health spokesman Brendan Elliott said doctors usually ask a patient to have a support person when they are presented with a serious diagnosis. Hutton accompanies her husband as he receives medical attention. (Jennifer Hutton) But the Huttons say that wasn’t the case in their case. They also say Don was given a Medical Assisted Dying (MAID) leaflet at the same appointment he received his diagnosis. Elliott said the purpose of including MAID in these discussions is to ensure the patient is making 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,” Elliott said. Today Don is active. He cleans the family pool, walks the dog and works part-time. While they are grateful that Don is doing so well, the Huttons worry about the impact a delayed test can have on a patient. The Huttons are introduced with their dog, Quinn. (Submitted by Jennifer Hutton) The Huttons advocate more genetic testing of the disease, especially for those with a family history of the disease. The ALS Society of Canada says 90 percent of cases are in people where there is no family history. “Genetic testing is not routinely done in all patients with suspected ALS but in appropriately selected patients,” Elliott said. “It is worth noting that there are currently no approved drugs or treatments based on genetic mutations. So this does not necessarily affect the clinical care of the patient. However, it could affect family members and could make the patient suitable for a particular clinical trial’.

Nova Scotia has the shortest wait times for an ALS diagnosis

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’m going to do my best to fight it until the day I pass, but until that day, I’m enjoying life,” she said.

title: “Nova Scotia Couple Upset Over 11 Year Wait For Als Diagnosis Klmat” ShowToc: true date: “2022-11-05” author: “William Mcelhaney”

After waiting 11 years to confirm what he already feared, Don Hutton was diagnosed with ALS at age 57 a year ago. “I just thought, ‘My life is over,’” Hutton said. “You have ALS. It’s 100 percent fatal.” ALS (amyotrophic lateral sclerosis), is a disease that causes people to become progressively 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 of diagnosis. The Huttons celebrate their wedding anniversary on a flight to ALS clinical trials in Montreal in this undated photo. (Jennifer Hutton) Hutton has watched family members suffer and die from the disease, but the medical community usually told him it wasn’t that. In fact, he was misdiagnosed with other minor ailments. Hutton’s wife Jennifer has become an outspoken advocate for his care, taking to TikTok to share her rants. “He’s my hero,” Don Hutton said. “She’s everything to me. Everything. I thank God for her.” Jennifer Hutton was out of the province on business when her husband received the diagnosis. “I want to make sure no one else has to go to a doctor’s appointment and be diagnosed with a terminal illness without a loved one sitting next to them,” she said. Nova Scotia Health spokesman Brendan Elliott said doctors usually ask a patient to have a support person when they are presented with a serious diagnosis. Hutton accompanies her husband as he receives medical attention. (Jennifer Hutton) But the Huttons say that wasn’t the case in their case. They also say Don was given a Medical Assisted Dying (MAID) leaflet at the same appointment he received his diagnosis. Elliott said the purpose of including MAID in these discussions is to ensure the patient is making 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,” Elliott said. Today Don is active. He cleans the family pool, walks the dog and works part-time. While they are grateful that Don is doing so well, the Huttons worry about the impact a delayed test can have on a patient. The Huttons are introduced with their dog, Quinn. (Submitted by Jennifer Hutton) The Huttons advocate more genetic testing of the disease, especially for those with a family history of the disease. The ALS Society of Canada says 90 percent of cases are in people where there is no family history. “Genetic testing is not routinely done in all patients with suspected ALS but in appropriately selected patients,” Elliott said. “It is worth noting that there are currently no approved drugs or treatments based on genetic mutations. So this does not necessarily affect the clinical care of the patient. However, it could affect family members and could make the patient suitable for a particular clinical trial’.

Nova Scotia has the shortest wait times for an ALS diagnosis

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’m going to do my best to fight it until the day I pass, but until that day, I’m enjoying life,” she said.