Elyse Claude Léveillé, Paula Stone and Diane Tkalec have traveled very different roads. This did not keep them, however, from putting their individual skills in service of a common goal: offering the best possible support to families who live with ALS everywhere across the province. All three are volunteers in the Society’s Programs and Services Committee, where they discuss the reasons that led to their involvement. An interview with three bright, strong-minded women with a big heart.
Paula Stone : «Improving the technical assistance provided to members »
During her career as an occupational therapist in the Access to Technology Program and the Technical Aids Department at the Constance Lethbridge Centre, as well as her time with the CLSC, Paula Stone met several people living with ALS who’ve really touched her. “What struck me the most in my work was the great need for residential support for people who live with ALS but do not have a family who can care for them. Those people end up in a nursing home (CHSLD).” Over the years, in a professional capacity, Paula had many contacts with the Society, but once she retired, she joined the Services and Programs Committee: “I went to a scientific day for ALS and I met Diane Tkalec, who was working on the respite program for the Society. I was well aware of the need for such programs and I had my professional experience to contribute, so I joined the committee.” Her knowledge of the realities of the health network, and of the available services that she gained as a healthcare professional, has allowed Paula to improve the technical assistance that the Society offers its members, from adapting someone’s home to their needs to communications assistance.
Elyse Claude Léveillé : « Caregivers are also important »
In addition to representing ALS Québec on the Board of the Federation Council of the ALS Societies Across Canada and being an active member of the Society’s Board of Administration, Elyse Claude Léveillé has been a member of the Programs and Services Committee of the Society since 2013. It is her personal experience with the disease that led her to share with the Society’s team her vision as a former caregiver. Elyse Claude lived alongside the disease while her husband Marc fought against ALS for three long years before passing. She felt a degree of solitude while accompanying him. “When people came over at the time, they were coming to see Marc. Of course, they would ask how we are doing, and we always say that we are doing well, but I told myself that we also need to care better for caregivers, because they need help too.” It is with this focus that the teacher uses her story today in order to improve the fate of those who must assume this role practically overnight. “Often, the person living with ALS passes away and the caregiver still struggles. It took me a year and a half after Marc passed away to sleep, to rest and get better, but I don’t think I have ever returned to my old self. The caregiver is also important,” says Elyse, whose hands-on knowledge of this reality allows psychosocial professionals to walk a mile in the caregivers’ shoes and to adapt the services and programs that are offered to their pressing needs.
Diane Tkalec : « Creating a different road for someone else »
Between the time of her husband Marinko’s ALS diagnosis to his death, Diane Tkalec had only 11 months to understand and absorb what was happening. “We had our own business, so there were many things to manage in very little time. Therefore, I never really had the “luxury” to sign up with the Society and to try out the programs and services that were offered,” shared Diane. Several months after her husband’s passing, she realized that too few people knew of the disease, and she undertook, in collaboration with the Society, the organization of a fundraising activity called Spinning for ALS. The event sought to invest the generated funds into the creation of new programs and services for families, a project that became close to her heart the second she became involved. “I could not change the road I was going to travel, but I could change the road someone else was going to travel. That transformed the feeling of helplessness I had felt as a caregiver throughout my husband’s illness.” A nurse by profession, Diane noticed that, too often, healthcare providers lack knowledge of the disease, and it is through her roles as the chair of the Programs and Services Committee and member of the Society’s Board of Administration that she hopes to change things. “I believe that, everything the Society offers and does should constitute the main source of information for people who must live with the realities of the disease. I think there are ways to better equip caregivers, which will lead to a new knowledge that will give more power to the next family that will receive an ALS diagnosis.”
The synergy at the heart of our mission
In addition to its desire to enhance the support given to families who live with ALS in Quebec, the Programs and Services Committee promotes partnerships with the health network. “We are aware of the importance of the Society and of the servicers and programs it offers, but also what is already provided by other organizations, and where there are deficiencies that need to be addressed. We do not want to offer something that is already available, but rather find a way to provide what is missing. We want to create a synergy with the other organizations”, says Diane. That is what the group successfully did in 2015 when it created the respite program, which provides an opportunity for caregivers to catch their breath. Finally, it is with the goal to support families as well as researchers and healthcare professionals that the three women generously give their time, their smarts and more than anything, their hearts, to fight ALS.
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