ALS challenge a daily reminder for local family

In the midst of the viral sensation of the ALS Ice Bucket Challenge, was the message behind the movement being left out in the cold?

The ALS Ice Bucket Challenge took social media by storm this summer.

But in the midst of the viral sensation, was the message behind the movement being left out in the cold?

In what began as a one-time dare to raise money and awareness about Amyotrophic Lateral Sclerosis (ALS), people of all ages from every corner of North America, were dumping ice water over their heads and filming it.

Videos and photos were posted on Facebook or Twitter, then others were challenged to do the same within 24 hours, and asked to match or exceed their donation to the ALS cause.

The spontaneous media campaign has raised over $13 million across Canada in just a few months, but just how much awareness was raised about the people living with and dying from the incurable disease?

A local family has asked themselves that question and is now sharing their story with the Greater Trail community because at the heart of the matter lies their beloved matriarch, Joyce Manwell.

Joyce was a spirited 74-year old just four years ago, living in an apartment on Trail’s Laburnum Drive with her husband Bob Manwell, a retired engineer from Teck Trail Operations.

She was a well known volunteer in the community and always had a smile on her face.

Joyce was fit, loved the outdoors, and kept a suitcase at arms length so when a deal came up for her and Bob to fly off to an exotic locale, away the two lovebirds went.

But around 2010, Joyce was beginning to lose her balance and trip, for no apparent reason.

Within months, she was diagnosed with Primary Lateral Sclerosis (PLS) which is a slower progressive form of ALS – otherwise known as Lou Gehrig’s Disease.

She can no longer lift her head to smile at her visitors, or open her arms up and hug her husband of 57 years.

Now the mother, great grandmother, and friend to so many, spends each day confined in a specialized wheelchair or hospital bed at Talarico Place in Castlegar.

PLS is wasting away her body and although she can no longer speak, her mind is as sharp as ever.

“People ask me how my mom is doing,” said her son John Manwell. “Like I’m going to say she’s getting better. And I’m sorry I have to tell them that everyday is just one day worse. There is no getting better.”

Like ALS, PLS is a progressive degenerative disease of the motor neurons, characterized by muscle tension and spasms that lead to compromised swallowing and breathing, paralysis and eventual death.

During the first few years of her diagnosis, Bob cared for his wife, and put his engineering mind to use, inventing ways to keep Joyce communicating.

Their family pulled together and in a daunting task, applied for and accessed an Interior Health program called Choice in Supports for Independent Living (CSIL).

John likens CSIL to forming a business, saying that “Joyce Manwell was the business,” and the program enabled the couple to maintain a health care team of care aides, nurses and therapists who provided complex daily care in their Glenmerry home.

“Dad made her up a board that had words so she could point to, like tilt (the wheelchair), lift, juice, things like that,” explained John. “And because my dad was elderly and she needed full time care, CSIL allowed us to hire, train and pay people. If we didn’t have that, she would have been in a special care wing somewhere,” he said. “And they didn’t want to be separated.”

The Manwells world came crashing down when Bob suffered a stroke, was hospitalized, and could no longer be at home for the CSIL team that gave Joyce the hands on care she needed.

“I think mom’s diagnosis affected his health very greatly,” said John. “He was very dedicated to my mom and stayed with her everyday for those years.”

It was just after their 57th wedding anniversary when Bob was in the hospital, that Joyce insisted on making a trip to the Trail facility to see him in person, for what could have been the last time.

“She went to the hospital and I think they were kind of saying a little good bye,” said John. “There were a lot of tears that day, it was pretty sad.”

Since that time, Joyce has been living in the Castlegar extended care wing, and although Bob lives just down the street at Castle Wood Village, the two rarely see each other.

John said his 81-year old father’s health remains frail, and because Bob can no longer understand Joyce, he becomes frustrated, which exacerbates his condition.

Joyce also becomes frustrated because she can’t communicate with her husband, so now they only visit every two or three months.

She always wanted to live and experience everyday until recently, said daughter-in-law Mary Lynn Manwell, and the support from her family is what’ s kept her going so far.

“When you see them get to a point where they don’t want to live anymore, it actually adds to the stress,” John added. “And there’s nothing you can do.”