Steveston resident Sheila Tynan is one of Richmond's rare faces of ALS and this Saturday at high noon she'll be asking the public to come meet her at Garry Point Park and take the ice bucket challenge, a viral fundraising activity that has swept across the globe via social media.
Tynan, now 62, was diagnosed with ALS in the fall of 2011. By all accounts she was a fit, healthy person after delivering mail for Canada Post in the Lower Mainland for 30 years. When she noticed a twitch in her hand she went to a doctor, who then sent her to a neurologist.
"I got diagnosed very quickly but a lot of people don't get diagnosed as quickly …I knew about ALS, but not in great detail. But I certainly do now," said Tynan.
Tynan was given a de facto death sentence with an ALS diagnosis. The disease rapidly deteriorates a person's neuromuscular system. Senses become impaired, muscles degenerate and eventually paralysis sets in. There is no effective treatment and cure, to date. Most people with ALS die within two to five years.
"At least once a week I go to do something that I did the previous week and I can't do it," said Tynan, whose speech is now beginning to slip.
Nevertheless, Tynan has good spirits and, as her spouse Margaret Hobson points out, she's still able to have a laugh about things.
"Fortunately Sheila is a very positive person and I'm the grumpy one. She tries to do things when she can but unfortunately some things are impossible," said Hobson.
Tynan noted her "number one" will not be dunking herself with ice.
"I think she's a little chicken," quipped Tynan.
"No! Someone has to dry you off after!" Hobson quickly retorted.
Tynan is now bound to a wheelchair. On Thursday she was outfitted with a new one from the ALS Society of BC, which is a major part of Tynan's support network.
"I have the ALS Society of BC who are providing us with all the equipment and support like a psychologist. I also have a great circle of friends and, of course, my number one, my spouse," said Tynan.
In Canada about 2,500 people currently live with ALS, otherwise known as Lou Gehrig's disease, a relatively rare disease.
The goal of the ALS ice bucket challenge is to raise money and awareness for the society.
"This will raise a huge amount of awareness and globally it will raise so much money. And research doesn't happen without money," said Tynan.
To date the fundraising has exceeded all expectations. So far, $10 million has already been raised through the ice bucket challenges alone and more is expected. According to Charity Intelligence Canada the ALS Society of Canada raised $6.4 million nationwide in 2013 (ALS walking fundraisers have typically been the most popular way of raising money). The society spends 42 per cent of its money on administration and fundraising, which is in the range of other large, national charities.
Tynan's challenge happens at 12 p.m. at Garry Point Park. Public are invited to participate in the bucket challenge and a BBQ hosted by M&M Meats will see proceeds go to the society. You can donate directly to Tynan online at www.alsbc.ca. Follow this link from the home page.
