The extended Underdown family gathered outside the Pinehurst mansion on Battery Street to help promote the upcoming Peoples Drug Mart Walk for ALS Sept. 13.

The extended Underdown family gathered outside the Pinehurst mansion on Battery Street to help promote the upcoming Peoples Drug Mart Walk for ALS Sept. 13.

Family bands together to battle relentless disease

ALS taking the life of Victoria resident Arlene Underdown.

Pamela Roth

It started with a slur in her speech, then progressed to losing the strength to be able to walk up the stairs.

In the months leading up to the day Arlene Underdown was diagnosed with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease) in June 2014, her husband Jerry knew something was wrong, but didn’t know what it was.

“We didn’t know anything about ALS until she got the diagnosis,” said Jerry, adding Arlene already had diabetes and some mobility issues before the diagnosis.

“In one way knowing is better than not having the knowledge, but when you find out there’s no cure for it, it’s pretty rattling. It was very hard.”

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 muscle wasting, that results in difficulty speaking, swallowing and breathing.

According to Jerry, Arlene has two to five years to live, but in the last 15 months he’s seen his wife’s health deteriorate significantly.

Arlene, 65, has progressively been losing her voice and is now difficult to understand. She went from using a walker to a power wheel chair, and now needs a lift to go to the washroom. She also uses an oxygen mask at night to help her breath. Eventually her body will shut down completely.

Despite support from the community, watching the health of their loved one slip away has been tough for the Underdown family.

“My daughters are playing different roles. Right now, we’re sort of managing,” said Jerry, adding Arlene is booked to go into a hospice Sept. 10 at the advice of her doctor. He’s not sure when or if she will return home.

“It’s a relentless disease. You just sort of come to grips with one issue and then there’s another.”

On Sept. 13, the Underdown family will be participating in the People’s Drug Mart Walk for ALS in Victoria, which will also be taking place in 15 communities across B.C. and the Yukon.

Members of the Underdown family, including Arlene, took part in last year’s walk, but Arlene won’t be able to join this year due to her stay at the hospice.

In order to help deal with her mother’s terminal illness, Shannon Ngongo-Underdown focuses on the moments she has left with her mother.

“The diagnosis of ALS in our family has brought us closer because we are aware of the time we have left to spend with our mom and as a family together,” said Shannon.

“Losing her will leave a big hole in our family, however, her love will always be with us.”

Registration for the walk takes place at 11:30 a.m. at the University of Victoria parking lot 10. The walk begins at 1 p.m. For more information or to register visit walksforals.ca/bc.

Proceeds from the walk go towards the ALS Society of B.C. to fund research and provide support for those living with ALS. The walk is the largest annual fundraiser of ALS societies across Canada.