Part two of a three-part series

It is difficult to stay positive in the face of an ALS diagnosis. Jess Gustafson says she and her husband, Alan, found hope and courage by supporting each other with a love that deepened over the course of Alan’s illness. She was also sustained by the outpouring of support offered by their wide circle of friends and family. Even so, Jess remembers feeling despair as Alan’s symptoms progressed.

Young couple holding their baby on a deckAlthough physical pain is not one of the typical symptoms of ALS, the challenges Alan faced were compounded by neurological pain. “As anyone who lives with chronic pain can tell you,” says Jess, “it really affects your mental state.” This burden seemed like one more cruel twist of fate on top of the fact that Alan was a new father facing a particularly aggressive form of ALS. Jess describes Alan as a very affectionate man. To watch as ALS took away his ability to hug his wife and cuddle his son was devastating. So was Alan’s increasing vulnerability. In order to avoid causing him pain, everyone had to be extremely gentle touching him when performing tasks like strapping him into his wheelchair or getting him into a car because he was so sensitive to touch.

Managing the pain was a perpetual challenge, but Jess and Alan were fortunate to receive excellent medical care. Through their connection with ALS Canada, they learned about a clinical trial in Montreal focused on slowing the progression of the disease, particularly with respect to lung function. At the same time Alan was participating in the trial, he was being closely monitored for his pain symptoms. Jess credits their neurologist with being instrumental in helping Alan keep the pain under control with a number of different drug therapies.

Not surprisingly, Jess is adamant about the importance of clinical trials like the one Alan participated in. She sees the potential for immediate benefit and for long-term gain. “Research and innovation happen in a context where you’re dealing with people who have the disease and you’re helping them manage their symptoms. You’re documenting their symptoms. That kind of research will help someone down the line to be more comfortable.”

Jess acknowledges, however, that even with the best and the brightest scientific researchers working to better understand the disease, progress never moves fast enough for the people living with ALS today. ALS is a complex disease. There is so much work to be done. And yet, leading scientific researchers agree that the future looks more hopeful today than ever before. As Jess points out, “When you put resources into research, really amazing things happen and cures for diseases are found every day. We could be right around the corner from a cure for ALS. We just need to keep pushing.”

Jess is determined to make a difference. One of the ways she is raising awareness this June Awareness Month is by using her voice to tell her story and urging others to support research funding. She recognizes the challenge in building a case for support when the population of Canadians living with ALS is small relative to other diseases. Part of the reason for this, of course, is that most people with ALS only live for two to five years. She argues that investment in ALS research would not only benefit the ALS community; it would inevitably add to our greater understanding of the brain and the nervous system, and most certainly, to our understanding of other related motor neuron diseases. Numbers aside, the horrible nature of this disease is enough to warrant an outcry to end the suffering. This month, Jess is speaking out about the importance of research funding so that everyone touched by ALS can have hope that one day there will be a cure and that an ALS diagnosis will no longer be a death sentence.

Read Part 1: Championing the ALS cause
Read Part 3: Looking forward, looking back

The biggest obstacle ALS research faces is funding. Give now to create a future without ALS.

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