As an ambassador for HealthPartners and the Society, Annie Huard generously shares her story not only to raise ALS awareness, but also to give a voice to the hundreds of caregivers who often forget to take care of themselves.
In 2007, Annie’s world toppled over when her partner Claude, a perfectly healthy man, learnt that he had ALS: “We were in shock, especially when we found out he was suffering from the bulbar form of the disease, the most aggressive form, for which life expectancy is anywhere from 18 to 36 months following diagnosis.” Torn between her husband’s needs and her own work as a hairdresser, Annie is overwhelmed by the pressure. In 2011, she is diagnosed with burnout symptoms by her doctor.
In September 2016, the tide turns for the couple. As Annie and Claude share their story with a local reporter, Claude issues an Ice Bucket challenge to his idol, triathlete Pierre Lavoie, in the hope that it will give ALS some much needed visibility. Not only does the athlete accept the challenge, but he also adds a new sporting dimension to it by setting up the ALS Sports Challenge. The popularity of this initiative in the Saguenay Lac-St-Jean community inspires Annie to share her story once again. “All the media attention that followed in our region created a lovely energy for us and gave us hope to move things forward,” says Annie.
Following these events, Annie writes Seasons of life, in collaboration with her husband. The testimony, presented twice by Annie to corporations, uses the four seasons to illustrate daily losses since ALS became a staple of their lives. “People are touched when I tell them our story. Many know nothing about ALS so, under the circumstances, they come and tell me just how much sympathy they feel for the reality we live in.”
In February 2017, Annie even participates in a special edition of magazine La Semaine on neurodegenerative diseases, where she talks about the importance for caregivers taking care of themselves. “It is important for me to share this, because the isolation is detrimental to the mental and physical well-being of caregivers,” says Annie. Through her role as a volunteer ambassador, Annie hopes for only one thing: “That caregivers be respected and recognized.”