Living with ALS
Bill Erving has always been the person called upon for tasks that required fearlessness, nimbleness and ingenuity. He would not hesitate to climb up into lofty rafters of a barn to hang a banner at a local fair, scale to the top of a Douglas Fir tree to rescue a cat, or climb into a cistern with mask and snorkel to retrieve a dropped object.
On his family’s hobby farm, Bill was the stay-at-home parent, plus managed all the livestock and tended the fields. He loved coming up with ways to work around problems, designing and building whatever was needed. The livestock grew to include pigs, sheep, chickens, turkeys, ducks, geese and trout. Off the farm, he enjoyed traveling, hiking, swimming, diving, water-skiing and snowboarding with friends and family. He had enviable energy and youthful vitality. “I love to be on-the-go,” he would say.
In the spring of 2016, Bill started to notice that he was tiring more easily. He had never felt like that before and at age 55, he wasn’t convinced that age could be the reason. Later that spring, he noticed that he couldn’t turn the ignition on the tractor very easily. No problem, he made a work-around with a small screwdriver to give more leverage. Then he started to notice that he was having difficulty picking up small objects and that collecting the eggs was hard as his thumb and fingers on his right hand wouldn’t work reliably. Ever adaptable, Bill just switched to using his left hand for tasks. “Just keep going,” he would say.
It was when he noticed the hollowing of the muscle between his thumb and first finger that he decided to pursue things further. He went to his family doctor, who ordered a CT scan of his neck and referred him to a neurologist for muscle and nerve testing. While waiting for those appointments, Bill was invited water-skiing with friends and for the first time, he could not get up on the ski despite multiple attempts. Later that day, he noticed that his muscles were twitching in his right arm, the start of muscle twitching throughout his body.
By the fall of 2016, the neurologist made the diagnosis of Amyotrophic Lateral Sclerosis (ALS). A trip to the ALS clinic in Vancouver, confirmed it. It was the least likely diagnosis he and his family would have imagined. Everyone who heard the news responded the same way… ”Bill, of all people, I never would have expected him to develop ALS.”
The news was shocking and turned his family ’s world upside down. Initially he and his wife felt numb. Thankfully, the ALS Society of BC was there to help with information, emotional support and practical help. The local health community was also very responsive. Soon, Bill and his family felt less alone on their journey. One of the most useful tools introduced to them by the ALS Society of BC was an online program called Lotsa Helping Hands. Through this program, Bill has been able to draw up a schedule of times when he needs help on the farm, and friends and family can sign up when they are able. They have also used the site as a blog for Bill to update his community without having to send out many separate emails. Friends have also used it to post pictures and humourous stories about Bill for others to read. “It has been a wonderful way to stay connected with others and feel their support”,, said Bill’s wife, Helen.
It has been a year since the diagnosis and although the ALS symptoms keep progressing, Bill and his family are embracing the idea of quality of life as more important than quantity at this point. They have come to that through a process of accepting the diagnosis and the fact that currently there is no cure, adapting to carry on as best they can and letting go of expectations.
Bill’s family have been very active in fundraising for the ALS community and hope that others will continue to make donations to help ALS patients like Bill. “The ALS Society has been a real anchor as we come to understand the enormity of the diagnosis. They make a daily difference in the lives of families affected with ALS.”