Category: Every August

Margot Algie heard about the ALS Ice Bucket Challenge in 2014 through friends and had no idea that only one year later, she would be diagnosed with the disease.

Since then, she has come to understand firsthand the importance of maintaining the momentum of the viral social media phenomenon that resulted in a $21.5M investment in Canadian ALS research. Margot is urging everyone around her to take the plunge and join the fight to end ALS. “Please, please, please take part in the ALS Ice Bucket Challenge,” she says. “It’s time to put another huge chunk of money towards research so we can find new drugs that can hold ALS at bay. We have to stop this disease from killing us.”

Despite the challenges Margot faces on a daily basis, she is the kind of person who always pushes through. “I won’t give up and say ‘woe is me,’” she says. “I just keep finding ways to overcome or compensate, whether it’s using an app to help me type, or adapting to my motorized wheelchair that was provided by the ALS Canada Equipment Loan Program.”

It’s hard to accept that everything happens at a “snail’s pace” these days, but patience is one of the qualities Margot is drawing on to settle in to her new routine. “Once you’ve got one new thing down pat, it seems there’s some other hurdle you have to adapt to just around the corner,” she says, “but I am more patient with others now, and more patient with myself. I’ll give you an example: instead of raising my voice in frustration and perhaps uttering choice expletives, I’ll take a deep breath, smile and say bring it on.”

When Margot was diagnosed with ALS, her colleagues at ICE (Integrated Communications and Entertainment) organized their own challenge by throwing a big “Bucket List” fundraising event for Margot. The goal was to raise enough money to check off as many of her own personal bucket list items before the effects of the disease progressed. Because everyone progresses through ALS differently and there’s no way to know the course it will take, time was of the essence.

“The best part about the event was the chance to reconnect with people I hadn’t seen in more than a decade,” says Margot. She is also tremendously grateful for the overwhelming show of love and support and overjoyed by the chance to tick off many items on her list, including her number one wish, to see Van Morrison perform live at a dinner theatre in Ireland. “There was a huge sense of community that really turned my thinking around. It gave me a reason to keep living with the time I have left,” she recalls.

Time is often on Margot’s mind. “I dwell in the short term,” she says. “I think about what I have to do today and how much time it will take to do.” Waking up each day brings new challenges that are harder and harder to overcome. She responds by trying to cherish each moment. “I am literally stopping to smell the roses,” she says, “hoping I can reach out and pull the branch towards my nose so I can take in the scent.”

Sadly, some bucket items are no longer within reach. Margot has always loved dogs. She owns a boisterous 13-month old English Setter, Charlotte. Though her wheelchair gives her the independence to accompany her partner, Roger, on their dog walks, she can’t control Charlotte on the leash on her own anymore. Even hugging her puppy is difficult. “If I could, I would have gobbled her up and cuddled with her while she was growing up, but instead I try just to pat her,” explains Margot. “By the time I get my hand near her she moves and I can’t do it because my motions are so very slow.”

“This is the start of a new chapter, perhaps even a new book,” Margot says in a moment of reflection. Her resilience and determination to make the most of each day help her accept the fact that she can no longer work or get out of the city on weekends like she used to. Receiving support has helped, including equipment from the ALS Canada Equipment Loan Program that would have been difficult to purchase on her own. In turn, Margot is giving back to the community by fundraising for the Walk to End ALS and facilitating ALS support groups at the Sunnybrook ALS Clinic in Toronto.

There is no time to waste. ALS is devastating the lives of 3,000 Canadians and their families every year.

It’s about time we added “end ALS” to the bucket list – take action today. Your generous support will help provide community-based support services for people and families living with ALS in Ontario; it will contribute to funding research and to federal and provincial advocacy initiatives within Ontario.

“When you start researching ALS, it becomes a life mission,” says Dr. Janice Robertson, a prominent figure in the ALS research community in Canada and abroad. Dr. Robertson is studying variations within the brain and spinal cord of people living with ALS using two powerful new technologies that allow researchers to examine the nuclei of about six thousand single cells at a time.  The goal is to gain a better understanding of how ALS progresses in the search for new treatments and a cure.

Dr. Robertson’s early research focused on Alzheimer’s disease but coming into contact with people living with ALS changed the course of her professional life. “I was doing my PhD in London, England and the lab I was working in was next door to an ALS clinic,” she recalls. “I would see people coming to the ALS clinic, and then coming in with walking sticks and then wheelchairs and then they didn’t come in anymore. ALS can move so rapidly. It’s such a horrible disease.”

In 1997, Dr. Robertson accepted a fellowship working alongside two key ALS researchers in Montreal, Heather Durham and Jean-Pierre Julien. Her original plan was to stay in Canada for two years, but her research took off, and landed her at the Tanz Centre for Research in Neurodegenerative Diseases at the University of Toronto.

One of the attractions of working at the Centre was the number of researchers working on other adult-

onset neurodegenerative diseases like Alzheimer’s disease and Parkinson’s disease. “It was a good place for me to develop an ALS research program,” says Dr. Robertson, “because these diseases are all linked and we can learn from one another, sharing ideas and techniques, and informing each other about our research.” Another important factor was the strong degree of collaboration among ALS researchers nationally and internationally, and opportunities for scientists, health care professionals and people living with ALS to make meaningful connections including at the ALS Canada Research Forum, hosted by ALS Canada every year.

Engaging with patients at the ALS Canada Research Forum and through her lab-based work with the ALS Clinic in Toronto continues to be highly motivating for Dr. Robertson and her team. They have been building a successful ALS research program over the last 15 years, collecting complete clinical patient histories, blood for DNA samples, and even analyzing the brains and spinal cords of people who have donated their bodies to science. “You have no idea the sacrifice these people make — time is not on their side, yet they give countless hours to be involved in our research. They’re incredibly courageous,” she says

Thanks in part to the success of the 2014 ALS Ice Bucket Challenge and the $21.5 million invested in Canadian ALS research as a result, researchers like Dr. Robertson, are confident that earlier diagnosis, new treatments, and the possibility of halting or slowing the disease progression are closer than ever before.

“I’m doing research now I couldn’t have dreamed about a few years ago,” says Dr. Robertson. “New technologies – like the new MRI-guided focused ultrasound for delivering therapeutics to the brain and spinal cord – are so important for moving this field forward. But these new technologies are also expensive and if you don’t have the money, you can’t move forward.”

The case for insisting on sustained support for people living with ALS is compelling, no matter how you look at it. “For some individuals, from diagnosis of their very first symptom to death can be six months,” says Dr. Robertson. “Fifty per cent of people die within 18 months; 80 per cent of people die within two to five years.” It is difficult to argue that change cannot come soon enough.

“Without research, we won’t find a cure,” says Dr. Robertson. “I think there’s confidence that within the next several years something really impactful is going to happen. But whenever you say something like that to someone with a rapidly progressing disease, they say, ‘well that’s no good for me, because I won’t be alive to see it.’”

“And that’s why time is of the essence, it’s not only for the future, it’s for the people living now with this disease.”

Beth Robertson’s husband, Tim, lived courageously with ALS for 12 years. He was sustained by the loving presence of his wife, Beth, his three children, and a large network of family and friends. Beth says she would do it all over again for Tim, but she admits ALS is a terrible burden for everyone it touches.

Looking back, Beth says Tim’s selflessness helped keep the family resilient and supportive with each other. “He let us continue to lead our lives. It helped that I kept my job teaching,” recalls Beth. “It was good for me and it helped Tim and I remain strong as a couple. I got frustrated when people called me a caregiver not his wife. I was his wife. We were husband and wife living with this thing and we just kept going.”

80% of people diagnosed with the disease will not live as long as Tim did. “ALS dominated every aspect of our lives. I can hardly remember what it was like before, but I remember every single moment when Tim was living with it. Every time he went into a little slump. Every time you’d see a decline. Where he sat on the back deck watching me garden when he couldn’t garden with me anymore.”

When Tim survived beyond the average two-to-five-year prognosis, Beth remembers imagining the possibility of more time with him. She hoped he might live a long life like Stephen Hawking, but she also harboured fears about how challenging it would be to live without hope of a treatment to stall or reverse Tim’s symptoms and how challenging symptom progression would be for the family.

“There’s no blessing in this. It’s a tough journey,” admits Beth. “Even though we had more time and Tim was fortunate to see his children graduate from high school, it’s hard to give a positive final message that is honest.”

Today, she is hoping for greater investment in ALS research so that researchers can better understand why people have ALS and how treatments can halt the disease early in its tracks. That’s why Beth participated in the ALS Ice Bucket Challenge three times and why she hopes the momentum will continue. “One time, I dumped the bucket on Tim in his wheelchair and then on me. I was so focused on me that I didn’t realize Tim still had a pile of ice on his head. Poor Tim,” she says. “I felt so bad for him. He never complained though.”

Investing in research is a priority for Beth but she is also deeply concerned about the availability of direct support for families living with ALS. She says ALS Canada plays a critical role by providing equipment, education, and emotional support but as a donor-funded organization it can’t do everything. It’s time for the federal government to do more to relieve some of the heavy financial burden on families living with ALS. “We were lucky to be able to afford things like retrofitting a van,” says Beth. “But what about the people who don’t have the money? I can’t imagine what that’s like.”

She says it’s also time for provincial governments to step up. In long term care homes for example, people relying on BiPAP machines to assist with breathing can be and have been refused access because of a shortage of trained staff to handle the equipment. “If people are going to live longer lives with ALS as a result of new treatment options, we need to make sure there are more resources in place to help them and support their families, including access to facilities and additional home support” insists Beth.

Now that Tim is gone, Beth is continuing to fundraise and volunteer for ALS Canada to help change the future for others. She’s giving her time because there’s no time to lose.

“I love volunteering in the office once a week. Everyone is so passionate and works so hard. I can see firsthand how well ALS Canada invests the money they raise,” says Beth.