Nigel Van Loan

Meet Nigel Van Loan, husband of Patricia, who died from ALS

Everyone stumbles sometimes when they walk down the street. You shake it off as clumsiness and carry on. But for Patricia Van Loan and her husband, Nigel, it wasn’t such an innocent occasion. They both feared — rightly so — that Patricia may be showing the signs of ALS (amyotrophic lateral sclerosis). After all, her mother and three sisters had succumbed to the effects of this horrific neurodegenerative disease. “The muscles begin to fail as the motor neurons that connect the brain to the body’s muscles cease to function. Paralysis is progressive. Eventually, the muscles of the diaphragm fail, breathing ceases and you die,” explains Nigel.

When the diagnosis was confirmed, Patricia was relieved that she could put a name to what was happening to her yet overcome with fear, dread and panic. She wrote down her thoughts, where they are posted on the ALS Canada website: “For days it literally took my breath away. Being diagnosed with ALS, especially when you have full understanding of and intimate family experience with the disease, is like waking up in the middle of your worst nightmare and discovering that it is reality. In ways I never could imagine, ALS laid me bare. I really didn’t know how I could live with ALS without going mad.”

“Patricia lost four members of her family to ALS. She saw how the disease progressively shuts down muscle function — and so when she learned that she too had this fatal disease, we were terrified. Without the support of ALS Canada, we would not have been able to manage as well or keep her as comfortable as possible at home.”

nigel van loan

To help them deal with her illness, she and Nigel began the journey of requiring support and assistance from ALS Canada. “Patricia wanted to die at home,” says Nigel. Given that ALS sufferers do not generally live beyond five years, it was only natural that Patricia wanted to remain home.

“During the course of her journey, as she progressively paralyzed, ALS Canada moved in. Through its equipment loan program, we received about $100,000 worth of equipment to keep her mobile, transport her up and down the stairs, and enable her to shower, bathe and get out of bed.”

Without the support of ALS Canada, one of 16 national health charities working under the HealthPartners umbrella to transform the health of Canadians, Patricia’s disease would have not been as manageable and her quality of life would not have as good as it was. “We are living proof that donating to HealthPartners works.”