Mina White has to speak through a voice amplifier.
“I think I’m on my last painting. I’m painting a bowl of cornflowers which are the emblem of the ALS Society. They may want to auction it off as a fundraiser or put it on cards,” she said.
White, 75, was diagnosed with ALS (Amyotrophic Lateral Sclerosis), a rapidly progressive neuromuscular disease in which the muscles degenerate and lose function while the senses and intellect are unimpaired, three years ago.
The disease started with a pain in her right leg with the pain, fatigue and weakness moving throughout her body.
“We didn’t know anything about it. There was never anything like this in our family. We found out that there is no known cause or cure and not much drug treatment. Last year, I could use my hands a little but now I have lost the use of my hands and my voice is weakening. Every morning it seems like it is a little weaker. I can’t feed myself now but I can still chew and I eat well,” said White, who has to use an electronic wheelchair and manages to paint with her arm supported in a sling.
Her family — husband, Peter, five children and grandchildren and great-grandchildren — keep her going with visits and outings.
“I’ve never seen my grandmother upset about it. She and my grandfather are very protective of us and keep strong and positive for us,” said granddaughter Nichoel Crawford.
“I think a lot of people don’t know what ALS is or how it affects people and their families.”
Crawford, her sister, Stephanie White, and other members of the ALS Society of Vernon have organized the second annual ALS Walk for June 16 in Polson Park.
“The money raised goes to help with ALS research and to support people with ALS. There are so many equipment needs a person with ALS goes through, from a walker to a wheelchair to specialized equipment to make life easier. People also need help with transportation to medical appointments and the ALS Clinic in Kelowna for re-assessment,” said Crawford.
“I went to the ALS BC conference and the speaker on research said there is hope for a cure in the next five or 10 years and that it may come from other areas of research as they find links with Alzheimer’s disease and Parkinson’s.”
White is looking forward to the walk which will be led off by the Kalamalka Highlanders Pipe Band.
“My son, John, will be pushing me and I’ll enjoy hearing the pipe band because I used to play the bagpipes years ago in Belfast, Northern Ireland.
“Having ALS is very difficult — something you would never expect to happen. I try to keep my sense of humour. If you have good humour the people around you will have good memories. I am truly blessed to have my family with me. If I was by myself it would be very scary to have my body go bit by bit but they don’t give me time to be scared. I have my Christian faith and an attitude of gratitude and my loving family.”
Peter added, “In spite of everything, she’s putting up a good fight.”
Last year’s walk had 100 participants and raised $33,000. This year’s goal is 150 participants and $40,000.
The second annual ALS Walk takes place June 16 in Polson Park with registration at 9 a.m. and the walk around the park pathway starting at 10 a.m. There will be children’s activities, a cake walk, massage table, the Okanagan Landing vintage fire truck and a silent auction including one of White’s paintings. Volunteers are still needed for the day of the walk. To pre-rregister or to volunteer, contact Crawford at firstname.lastname@example.org.
ALS: the facts
ALS is a fatal neuro-degenerative disease where motor nerve cells die and the voluntary muscles degenerate. The senses and intellect remain unaffected. People with ALS become progressively paralyzed and 80 per cent die within two to five years because they are unable to swallow or breathe.
There is no known cause or effective treatment or cure for ALS. For every person diagnosed with ALS, a person with ALS dies. About 3,000 Canadians have ALS, which is usually diagnosed between ages 45 and 65, although it can affect people of any age. It affects men and women equally.
ALS has an incidence rate similar to that of MS but seems more rare because people with ALS die sooner after diagnosis. About 90-95 per cent of cases occur at random with five to 10 per cent inherited.
The ALS Society of B.C. raises funds for research and to provide services for people with ALS with an extensive equipment loan program, support groups and educational material. There is no cost to patients for ALS services. For more information see www.alsbc.ca.