Advocacy and funding for research and community-based support services are things that were important to Susheela. She was featured in ALS Canada’s eAdvocacy campaign this year which launched during ALS Awareness Month in June, and she’s also featured in our end of year holiday giving campaign. We recently learned that Susheela passed away from ALS in late November. With encouragement and permission from Susheela’s family, we continue to share her experience and passion for the cause. Our thoughts are with those who love and cared for her.

Susheela Balasingham first noticed signs that something was off when she felt weakness in her left hand and was unable to hold on to a piece of paper. Hard patches on the soles of her feet made her uncomfortable and unstable. She had fallen a few times due to balance issues and instability, and for these reasons her family doctor referred her to a physiotherapist, who then advised her to see a neurologist.

In October 2020, the year she turned 71, Susheela was diagnosed with ALS. She and her husband didn’t know what ALS was then, but once her family started researching it, they were shocked to know how it was going to affect her life. She was devastated and in denial for months before the acceptance started to set in.

“My husband and family gave me the support by constantly reminding me that everything will be okay. Since we didn’t know how the progression was going to affect me and my husband’s lives, as he is the sole caregiver, we both took things one day at a time and improvised on solutions to make it comfortable for me,” Susheela said.

An extremely active individual prior to her diagnosis, she worked at an investment services company for 16 years as a quality control officer. She also volunteered at the Senior Tamils’ Centre of Ontario, holding the position of director and assistant secretary on the board, from 2014 up until shortly before her diagnosis.

“I spent a lot of time with my grandchildren in the US and they would often come and visit me and my husband,” she said. “I took part in a lot of their extracurricular activities. I also was a good baker and jewelry designer. I used to make a lot of birthday cakes and jewellery for family, friends and different events.”

About one and half years after receiving her diagnosis, Susheela lost the ability to use her arms, hands, legs and voice. At that point, she was able to communicate with the help of eye-gaze technology, for which she was thankful. The device was one of the things that ALS Canada helped her to secure and her Community Lead was committed to helping her navigate our healthcare system to obtain support that is publicly available.

“ALS Canada has helped me equip my living space with the appropriate equipment and tools that have tremendously helped my husband in supporting me. They have helped me with agency by connecting me with programs that provide personal support worker hours. Most of all, they have been a great sounding board and provide coaching for situations that my husband and I have come up against,” she said.

Susheela was no stranger to adversity, having lived through a civil war in her native country of Sri Lanka, which she left for Canada 30 years ago. “There were many obstacles and stresses that I faced early in my married life due to the civil war in my birth country, that taught me to appreciate life and to see the positive in any outcome,” she said. “These experiences have also led me to find solutions and make peace with whatever comes my way.”

In difficult times, most people have coping methods to help them along the way. For Susheela, her loving and caring husband gave her support and strength to cope with ALS. “He is an engineer by profession and very practical in dealing with anything in life. His wisdom carries me through the day. My children and extended family are also very supportive in being there emotionally and physically as needed. Every day there will be someone to talk to me. I am grateful and blessed to have all the support I have,” she said.

“The earlier we [people living with ALS] have access to approved therapies, the higher the chances we have to slow the progression of the disease and maintain quality of life,” Susheela said. “As someone who has lost most of her motor functions a year and a half after diagnosis, I do wish that I could have accessed approved therapies that may have helped me keep some of my mobility for longer.”

Earlier this year, Susheela was one of the featured ALS community members in ALS Canada’s advocacy campaign during June’s ALS Awareness Month. She was the face of ALS Canada’s “The Time is Now” position paper, an urgent call for expedited and equitable access to ALS therapies. The campaign was focused on rallying the community to tell elected officials about the importance of policy changes that ensure equitable, accessible and timely access to Health Canada approved therapies for people living with ALS – and to date more than 6,700 Canadians have taken action.

Susheela felt strongly about participating in advocacy efforts because it was important for her to help increase awareness for the disease. The time is now to support the discovery of new treatments, and to help families and people living with ALS like her to have access to community-based supports.

The time for change is now

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