Jerry Underdown knew the day would eventually come.
When his wife Arlene was diagnosed with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) in June 2014, she was given two to five years to live. But in the year leading up to her death last December, her health deteriorated significantly.
During the last six to eight weeks of her life, the 66-year-old was confined to a hospital bed in her Victoria home. Prior to that, she spent much time in her power wheelchair after losing all of her mobility.
Arlene also used an oxygen mask at night to help her breath and communicated with loved ones through an iPad after losing her voice. Looking back, Jerry admits last fall was hard for the Underdown family, who continue to deal with Arlene’s death in different ways.
“We knew it was coming, but it happened a little quicker than we thought,” said Jerry.
“My energy now is making sure that the family members are all okay. I think we’re a pretty strong family and I think we’re all coping.”
ALS is a terminal illness that involves the death of neurons that control voluntary muscles. The illness is characterized by stiff muscles, muscle twitching and gradual weakness due to the muscle wasting, which results in difficulty speaking, swallowing and breathing. It can strike anyone at any time and there is no cure.
According to Ellen Mahoney, a nurse and volunteer who visits new patients diagnosed with ALS, there are currently 35 people in Greater Victoria living with the disease, which affects the body in different ways. Some people just have their arms or throat affected, while others lose control of their entire body.
Mahoney provides patients with information about the disease and connects them with a health care team. But one of the most important connections is with the support group, which she said provides a positive experience for a family preparing for their loved one’s death.
“It’s important to know they are not alone, there’s a team of people as well and the support group there. We’ve got people who lost somebody years and years ago and they still come to every meeting,” said Mahoney, noting there’s much work being done in terms of research and drug therapies.
“They are uncovering things all the time so we are very very hopeful.”
Arlene’s problems began with a slur in her speech, then progressed to losing the strength to be able to walk up the stairs. She already had diabetes and some mobility issues before she was given the diagnosis. Finding out there’s no cure rattled the entire family.
Arlene passed away in her sleep, just two days before she was scheduled to go into a hospice.
Whenever Jerry thinks about his wife, he remembers a caregiver who had a love for babies and children. The couple once operated a family group home and were always taking children in as fosters. That, said Jerry, is how they ended up with six adopted children in addition to three of their own.
On Sunday, Sept. 18, memories of Arlene will be in abundance as the Underdown family and friends gather to participate in the 15th annual Peoples Drug Mart Walk for ALS Victoria. The walk is the largest annual fundraiser of ALS societies across Canada, with proceeds going to fund research and provide support for those living with the disease.
“This disease comes upon people as a surprise and there’s always new families that have just received the diagnosis and they need help,” said Jerry. “With ALS, you go from tripping on a cane to a walker to a wheelchair to a power chair to a hospital bed. That’s sort of my experience on the journey…Arlene’s always still with us and will be with us on the walk.”
This year’s walk takes place at 11:30 a.m. at the University of Victoria parking lot 10. A five kilometre walk starts at 1 p.m. The public is welcome to attend.