One on one with Rick Zwiep

Patient Voice spoke with ALS patient advocate Rick Zwiep about how life has changed following his diagnosis, as well as what motivated him to become an outspoken advocate for equitable access to innovative treatments.

Photography by Patient Voice.

1.Can you tell us a bit about yourself?

I’ve always been naturally curious. Growing up, I’d be at the library five days a week, always taking out all kinds of books on all kinds of subjects. That curiosity has stuck with me all my life, and I’ve tried to pass it on to our three children. They’re all explorers. My daughter is an occupational therapist, my middle son is an engineer, and my youngest son builds websites. So far they’ve given us two grandkids with two more on the way. And here I am, at 66, still working, still building cool software at a leading Canadian telecom, still playing with the newest tech.

Life has been an adventure. Work, raising a family, finding new ways to explore and stay active. During COVID, my wife and I took up walking. 10,000 steps one day, 15,000 steps the next. Just another new thing to do. But then I started experiencing serious pain in my leg. It got to the point where I could hardly walk around the corner to the post box. 

I went to see my doctor, and then a neurologist. DNA testing ruled out genetic ALS, so we didn’t worry too much. Sure, I couldn’t do my long walks anymore, but I bought an e-bike and I started getting into home renovation. For me, when one hobby gets ruled out, two more take its place. And then, in August of 2022, I got the news. It was ALS, after all.

2.How has life changed since your diagnosis?

I’ve been fortunate that my progression to this point has been slow. Yes, the pain, weakness, and cramps in my legs have gotten worse. I have a walker and foot braces now. I go up and down stairs slowly with a tight grip on the handrail. I have a stool to sit on in the shower. But I’m still able to drive. I’m still working.

Every day with this disease is a new surprise, though. You never know which little part of everyday life is going to suddenly get harder, whether it’s dressing yourself or keeping your balance while standing at the toilet. And then, one day, the thing you can’t do anymore is walk, pick up a glass, or speak.

“Every day with this disease is a new surprise, though. You never know which little part of everyday life is going to suddenly get harder...”

But, for now, everything just takes longer. When I'm making breakfast, I plan things out so that I don't have to make unnecessary trips around the kitchen counter. Everything I do has become much more methodical to avoid the risk of falling. And then there are moments where the progressive nature of this disease takes centre stage. I remember the day my manual wheelchair arrived and I just sat there looking at it, thinking: “This is my future.” 

My wife, Joyce, and I are in the process of moving to a bungalow and modifying it for accessibility, because we decided it was better to tackle that now rather than wait until the stairs became impossible for me. A huge part of the game is trying to stay ahead of the disease.

3.What is the current ALS treatment landscape in Canada?

There are now three Health Canada-approved treatments for ALS, two of which were only introduced within the past few years. It’s really encouraging to know that there are all these people focused on helping people living with ALS (PLWALS) live well and extend their lives. For me and my community, hope is everything.

That said, there’s a bit of an inherent wake-up call when you get diagnosed and learn that the Canadian health care system isn’t as magical as you once might’ve believed. I was fortunate in that I was diagnosed and began on treatments relatively quickly, but unfortunately it typically doesn’t work that way. The symptoms can be easy to miss and sometimes it can take months, or years, to see a neurologist and gain an accurate diagnosis.

4.Are these treatments available to all Canadian ALS patients?

They aren’t. There are so many factors that can affect which treatments you can or can’t access, like which organization you or your spouse or partner work for, and how long it took you to receive a diagnosis following symptom onset. For example, I have a letter from my wife’s insurance company regarding one of the available treatments saying — and I’m paraphrasing here, but not by much — “It’s too expensive and you’re not worth it.”

Look, we’re under no illusions. We know we’re dying, we just don’t know how quickly — six months, one year, five years. These treatments aren’t going to save our lives. They’re not going to reverse the course of this disease. But if they can give us one more year, even one more month, of good quality of life with our loved ones — with our children and grandchildren — how could we not fight for that?

So, of course, I got involved in advocating for access to treatment. It was another new thing to learn about. There was research to be done, people to meet, conferences to attend. There’s a dire urgency to this advocacy. This is a rare disease with grim timelines attached to it. How can we ask people to wait months or years for treatment when we don’t know how much time we have left?

5.How can our readers support your efforts?

There’s so much room to get involved. There’s power in numbers.

We need to get the message out that change and hope are vital. After all, hope is all we have. Hope that our progression will be slowed. Hope that there will be new treatments approved that may help us live longer. Hope that the bathroom at the restaurant we’re going to will be accessible. Hope that barriers to public and private access can be overcome.

More than anything, though, I hope that Canadians will have the veil lifted from their eyes about the realities of the Canadian health care system when it comes to rare diseases like ALS. If you haven’t had experience with a rare disease — either yourself or through a loved one — it can be easy to imagine that it’s straightforward. That you get a diagnosis, get a prescription, and then you get the newest, most effective treatments. That’s just not how it actually plays out. There’s inequity. There are barriers. There are massive improvements to be made.

“We need to get the message out that change and hope are vital. After all, hope is all we have.”

Look, I like to think of life as a choose-your-own-adventure book. Everybody reaches one ending or another eventually. I found my way to one of the harder chapters, but there are plenty of people on other chapters that are as difficult as or more difficult than mine. We each only see a small part of the book, but we can work together to understand the whole text, to make everyone’s story a little easier.

Rick is a volunteer with ALS Action Canada (ALSAC), Canada’s first and only ALS patient-led non-profit organization. ALSAC is dedicated to building a movement to ensure urgent, equitable access to promising drug therapies, more and better clinical trials in Canada, and increased federal and provincial investment in ALS research.

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‍This content was supported by a research-based pharmaceutical company. This page was developed by Patient Voice, and the supporter did not influence the final article or editorial themes of this content.