Sandy and Mark Vivarais’ three-year-old grandson, Keaten, is a ray of sunshine in their Grandparents and grandchild smiling at one anotherdaily lives, especially now that Mark has been diagnosed with ALS. Keaten is also a great little helper. He loves to put Mark’s socks on and comb his hair for him, simple tasks Mark can no longer complete on his own. Keaten is also looking forward to sitting on his grandfather’s lap at this year’s WALK for ALS in Cornwall while Mark completes the 5km route in an electric wheelchair provided by ALS Canada.

Sandy admits she is “still in disbelief” about the ALS diagnosis Mark received in December 2017 even though she had already anticipated the bad news based on some of Mark’s symptoms and research she had done online. Originally, Mark travelled to Toronto for an assessment of a shoulder injury on his right side. At the same time, he inquired about some unexplained issues he was having with his left arm. When he was told he had ALS, he says it came as a surprise. “I’ll tell you, it was shocking. I’m still having a hard time with it, but you have to keep going,” he says.

In early 2018, Mark was referred to the ALS Clinic in Ottawa where he and Sandy first learned about ALS Canada. Within days of contacting the organization, Sandy heard from their Regional Manager, Lianne, who arranged a home visit with the family. In addition to helpful written material she provided, Lianne took a tour of the house to suggest ways the couple might help accommodate Mark’s needs and she invited Sandy to a special session to teach caregivers about optimal strategies for lifting and transferring their loved ones with ALS. She said the session run by an Occupational Therapist was “bang on” in terms of giving practical hands-on advice about how to deal with a fall – an unfortunate reality of ALS — now that Mark can no longer pick himself up using his arms. She is also very grateful for the equipment ALS Canada provided that is not covered by Mark’s work insurance, items like a walker and an easy lift chair to help with mobility and comfort.

Sandy is not new to volunteering and she is not shy about fundraising but she has been overwhelmed by the outpouring of support from friends and family. As part of her outreach, she has also contacted local companies such as her neighbourhood pharmacy and real estate firm for donations for the WALK for ALS. She appreciates that not everyone can give a large donation, but she was thrilled that the first person she approached gave $200 in Mark’s name and encouraged by some even larger gifts she has received since then.

Fundraising comes naturally to Sandy and she knows she is doing it for a good cause. Although friends suggested Sandy and Mark set up a GoFundMe campaign to help the family cover some of the costs associated with caring for Mark in their home, the couple felt fortunate that they were in a position to manage the financial burden with some help from the ALS Canada Equipment Loan Program. Instead, they asked their friends to support their fundraising campaign for ALS Canada so that other families might also benefit. “I’ve always believed that whatever you give you get back,” says Sandy. “I look at the ALS loan pool and I see how many other people can use that and benefit. It’s really about making life better while the person is still here that is so important,” she explains. Their new electric wheelchair having been recently delivered, Sandy and Mark feel fortunate to receive support, and are equally determined to pay it forward.

The WALK for ALS takes place in over 90 communities across Canada until September 2018. Register or donate to a WALK near you at Donations for all WALK for ALS events are being accepted until December 31, 2018.

Posted in: WALK for ALS