Rick Zwiep - Nothing About Us, Without Us

"I sometimes maybe exaggerate a little too much how well I'm doing when I'm not really, just to give people the permission to engage. You wouldn't know that
I can barely brush my teeth anymore."

After Rick Zwiep's diagnosis in August of 2022, he was quick to become a loud and proud part of the ALS community, spreading awareness about the disease at every possible turn. Today, Rick sits on the board of directors for ALS Action Canada, where he leads a community support group to uplift his fellow pALS. Rick is also part of the ALS Super Fund's advisory council, providing his patient input as to how donated funds should be allocated across the country. Join us for a conversation of science, research, accessibility, support, and what it means to be a patient-led organization. 

EDIT:  We stated that, "To date, more than 100 genes have been identified that, when altered, can contribute to ALS." The ALS online Database or ALSoD website lists 152 genes and genetic variants that are connected to ALS. This may include some genes with variants that have been shown to be related to ALS, but the evidence is weak. The list includes information on all recorded genes in ALSOD, and the genes have been categorized. The categorization is subject to change based on new evidence and is a consensus which may be debatable among experts.  

For more information on ALS Action Canada and the ALS Super Fund, visit https://www.alssuperfund.ca/

To view the ALS Super Fund 2024-2025 Impact Report, visit https://drive.google.com/file/d/12U8As6IIAoubCv-Ih-e2bpy9IRKifS0T/view

For more information on Everything ALS webinars, visit https://www.everythingals.org/

For more information on Eric Brunner’s project, Flickering Souls: Illuminating ALS, visit ericbrunnerart.com

For more information on the ALS Therapy Development Institute, visit als.net

For more information on Brooke Eby’s project, ALSTogether, visit alstogether.org

For more information on the Northeast ALS Alliance, visit neals.org 

For more information on ALS, please visit the ALS Canada website at https://als.ca/

Episode Transcript

Transcript

Land Acknowledgement

SPEAKER_08 0:00

This podcast is recorded and produced in the Township of Tiny, Ontario, on the traditional lands of the Huron-Wendat Nation and the Anishnabik people.

SPEAKER_07 0:08

We want to thank the Indigenous people for their past and present stewardship of these lands and waterways, and look to their wisdom to guide us toward a future of harmony and good health for all beings that call Turtle Island home.

SPEAKER_06 0:24

Constant desire to help others relentlessly pursues knowledge about the disease.

SPEAKER_01 0:29

Always looking for some way to help. It's incredibly warm and calm.

Introduction & Diagnosis

SPEAKER_08 0:37

Welcome to Originals More Than ALS, the show where we highlight the lives and experiences of the ALS community to spread awareness, education, and hope. I am one of your hosts, Flynn Mason. And I'm the other host, Haley King. And we're joined today by Rick Sweep. Thank you for joining us, Rick.

SPEAKER_03 0:53

Hey, I'm so glad to be here. It's a real privilege to talk with you both today.

SPEAKER_07 0:56

Rick Sweep comes from a successful 30-year background in the telecommunications industry, working in product management and technical sales for companies such as Gartner, MTS Allstream, Rogers, and TELUS. A curious man with studious tendencies, a love of books and new technology, and a drive to succeed, Rick has forayed into ALS advocacy to impressive results. Since his diagnosis in August of 2022, Rick has been featured by organizations such as Healthing.ca, Patient Voice, Brainstem Cell Therapeutics, and the ALS Therapy Development Institute. A graduate of the Canadian ALS Learning Institute, Rick proudly promotes ALS Society of Canada fundraising events such as the Revolution Ride and Walk to End ALS. Today, Rick sits on the board of directors for ALS Action Canada, a patient-led organization acting to amplify the voices of those living with ALS and their caregivers. He is also part of the Advisory Council for the ALS Superfund, which has raised over$1.8 million for ALS research since 2020.

SPEAKER_00 2:07

For more on Rick, here are some words from his family. What makes my dad special is his constant desire to help others. He's always willing to share his knowledge and experience, lend a hand, whether it's practical or emotional. And even when his help isn't asked for, it always comes from a place of deep care.

SPEAKER_02 2:25

My dad is just incredibly warm and kind. He's always been curious, genuinely interested in the people around him. He's also a wonderful grandparent, so generous with his time and his energy. And my kids absolutely love being with him.

SPEAKER_01 2:40

When I think about my dad, I think about someone who's always busy, always moving, kind of always looking for something to do, but really always looking for some way to help. So while it's been hard to see him not able to do all those things anymore, it's it's amazing to see how positive he remains and how he's really kind of embraced his new community and finding ways to help there wherever he can.

SPEAKER_06 3:03

When Rick was first diagnosed with ALS, a community liaison person told us that in her experience, only the best people got this devastating disease. I agreed with her that this was true about Rick, but I didn't realize how much this kindness would influence his journey. Rick actively and relentlessly pursues knowledge about the disease, but also about research, resources, and all available supports for ALS. He tirelessly shares all of this information to benefit everyone he meets also living with ALS. He is an absolute wealth of knowledge, and his singular goal is to ensure that all pals and caregivers have all the information they need and every resource that's available to make their journey with ALS the best it can be. He fully lives up to our family's name for him as the mayor of ALS Town.

SPEAKER_08 3:53

Rick was diagnosed with ALS in the summer of 2022, but he first began noticing something was off during the early days of COVID. In an effort to get out of the house, Rick was walking 10 to 15 kilometers a day until he started to feel a pain down the back of one leg that he had never experienced before. Assuming this pain was caused by age, overuse, or spending too much time sitting at a desk, Rick didn't initially give the pain much thought.

SPEAKER_03 4:18

But it was getting worse and worse to the point where instead of doing 10-15 kilometers, I could barely walk around the corner of my property to the mailbox. So I was like, something's really not good here. Now looking back, I remember one time my walk was caught on video and I saw the way I was walking was kind of peculiar gait, peculiar stride. But I had just bought these new running shoes from Hoka. I don't know if you remember those. They kind of have a bit of a rocker to them. So I thought, oh, it must be these new running shoes that are making my my foot kind of land flat on the pavement. I felt like I was slapping one foot down all the time. Well it turns out this was the beginning of what's called foot drop, which is very common for limb onset lower limb people as a first sign of something going wrong. It's an indication of muscle atrophy that's already taken place because of motor neuron death. It's already happened long before that already. Anyway, I didn't know that at the time. This was just looking backwards again.

SPEAKER_07 5:12

At this point, Rick went to see his family doctor and was immediately referred to a general neurologist at a local hospital. This neurologist ordered a series of EMGs and nerve conduction studies, which Rick found to be quite fascinating.

SPEAKER_03 5:26

Some people actually find them extremely painful. Mine was tolerable. I was sort of laughing in the first one because I was reminded of you remember in high school when we played with frogs' legs and put a battery on the frog leg and the muscle would would jump? Yeah. Or you saw a video of that or whatever. This is what it felt like, right? They put a little electrode on your skin, give you a little shock, and you could see the computer was logging numbers on the side. And uh I saw a bunch of numbers highlighted in yellow. So I thought, oh, this is good. Whatever it is, they're measuring something, and there's some parameters that are not right. So this will be good. You know, we'll know what it is and how to fix it. Then she wanted to do the nerve conduction where they stick a very fine pin into your muscles and turn up the volume on the computer, and you can hear some nerves firing, and you can actually hear the sound like a big static burst on an old shortwave radio when you if you remember that. The only problem was the neurologist kept saying, Oh, do you mind if I move the pin a little further up? A little further up, and she kept saying, Oh, this is interesting. Do you mind if I move the pin a little further up? Till she was way up in the top of my bum cheeks, um, up in the muscles up there, and she's still kind of like, Oh, this is very interesting. So I'm thinking, hmm, when a specialist says very interesting, maybe that's not such a good thing. Right. But we uh we did several sessions like that.

SPEAKER_08 6:47

Around 2021, Rick received two different genetic screenings at two different universities. To date, more than 100 genes have been identified that, when altered, can contribute to ALS. Each gene is considered to be part of one of six categories. These categories are definitive ALS gene, clinical modifier, strong evidence, moderate evidence, tenuous and unassigned. The most common genetic causes of ALS are due to variants in four genes: C9ORF72, SOD1, FUS, and TARDBP. Rick was tested for just the most common specific genetic variants rather than receiving a full genome sequence.

SPEAKER_03 7:28

There was this nervousness around, you know, before the results come back, you kind of have this thinking and you're advised to buy insurance. Now would be the time to do it because you haven't got your results back yet, and then the results came back with nothing. There was no indication of any known genetic mutation related to ALS.

SPEAKER_07 7:47

After these results, the general neurologist referred Rick to a more specialized colleague. Rick believes his initial neurologist may have strongly suspected ALS at that point, but perhaps didn't feel qualified to make the diagnosis due to the nature of diagnosing the disease. ALS is a diagnosis of clinical observation, meaning that the only way to diagnose it is by ruling out all other potential diagnoses through an intense series of testing. Rick's next neurologist was at Sunnybrook Hospital in Toronto.

SPEAKER_03 8:18

Okay, I know Sunnybrook. It's a big hospital, lots of stuff there connected with the University of Toronto. So I met with a neurologist there in his office, and they did all the same test all over again. Do some muscle strength test, you know, push your hand this way, push your hand sideways, squeeze your fingers, squeeze my arm, push against my leg, you know, all this kind of stuff. Just to demonstrate strength and and test your reflexes. I mean, pretty basic stuff when you're the patient and you don't know the context. You're thinking, well, okay, well, this is just like a physical. I describe all my symptoms. By this point in time I'm starting to get fasciculations, which are twitches, big twitches in the muscles in my legs. Uh the ones on the top um were particularly wonderful to watch because you could really see them, you know, even through your pants. You could see the leg twitching.

SPEAKER_08 9:05

Rick didn't think much of his fasciculations at first, thinking he must have just pinched a nerve. He figured he may need some form of surgery, but that it wouldn't be long until he was feeling back to normal. Unfortunately, after another several visits at Sunnybrook, a full body MRI, and a consult with a neurosurgeon, he was left with the diagnosis of ALS.

SPEAKER_03 9:24

Now the weird thing for me was that my second last appointment was in April. And I'd gone by myself. At that meeting he said to me, Well, Rick, do you know why that other neurologist referred you to me? And I was like, Oh shoot, I never thought to ask. And I never played Dr. Google in any of this. So I never was putting two and two together myself. So he's like, Well, I specialize in neurological disorders, particularly ALS. At this point, my brain's like, this isn't good. This isn't going in a the direction I wanted. And I mustered up the courage to say, look, what's the likelihood that I have ALS? He says, Well, I'm I'm gonna say you you have probable ALS. So by myself, I'm in this little waiting room. There's a painting on the wall of a Toronto streetcar, I remember it forever now. Took a moment, took a deep breath, asked him a few questions, I was pretty composed, and I left. And it was only until I got to the parking machine to pay that I was it has started to you know break down a little bit, and kind of I'm trying to pay, and I'm trying to get to my car and sit in there and have a moment to myself to compose myself so I could be safe to drive.

SPEAKER_07 10:29

But all in all, it was over a year and a half from first seeing a neurologist to receiving the final diagnosis. This isn't an unusual timeline, but it's not ideal. Eligibility criteria for clinical trials often excludes people whose disease duration since the first symptom is greater than two years. The reasons for eligibility criteria vary, but researchers need to ensure they have a fairly similar or homogeneous group of participants with respect to symptoms. Yeah, I think that's why, like to me, it's such an important thing, like what like early symptoms and being able to recognize those and getting a diagnosis.

SPEAKER_03 11:08

I mean, I realize it is a difficult thing to diagnose, but it my journey was my journey because of the circumstances. I've met other um people living with ALS who have had a much faster experience, literally months, um just through luck and and an opening and a schedule. And my hospital has probably 800 active patients. So when you put that in the context of two neurologists, it's a lot of appointments, it's a lot of people to see. It is, and that's after they're kind of diagnosed, the pre stuff, right?

SPEAKER_07 11:39

So yeah. So when you notice that foot drop, you noticed it in the video, but like prior to that, doesn't sound to me like you were really aware of any weakness yourself.

SPEAKER_03 11:51

There are some hints looking back. One of my passions all my life since I was five years old and learned to ride a bike has been bike riding. So had a habit for a long time of trying to ride 25-30 kilometers on a I don't have a I don't have a racing bike, I just had a like a hybrid, hybrid mountain bike. So 25 clicks is a decent ride. And I I felt like I was slowing down, like I couldn't go as far. Felt a little more tired, and I just figured I'm getting old again, sitting too much at a desk. And then one of the other things I had taken on quite a bit uh at that time was uh major home renovations, and uh I'd gone to Home Depot and got a big giant box of that drywall paste for a big guy like me with some muscles, never would have been a problem. But as I was walking to the car, I was holding it with two hands in front of me, and I'm thinking, I'm gonna have to stop and rest. I this is heavy, I can't do this. What's going on?

SPEAKER_07 12:42

Uh okay, yeah.

SPEAKER_03 12:43

Just feel weak.

SPEAKER_07 12:44

Like weak in your arms versus your legs.

SPEAKER_03 12:47

Yeah, yeah.

SPEAKER_07 12:48

Oh, yeah. Okay. That's good to know. Like, that's the kind of thing I like to hear, right? Like, just you know, sort of those like more subtle things that the people might look back and say, Hey, wait a second, I think that might have been like one of the earliest signs.

SPEAKER_03 13:01

When we look back really hard now, my wife says, for 10 years, maybe even you've been twitchy, Rick. You know, when you're with a partner, you're laying in bed and stuff like that. And I'd often be like, get away from me, you're all twitchy. Who thinks about that, right? Like, this is whatever, okay. You know, I'll try and lay still. You know, maybe I'm just twitching because I can't settle in. But but it turns out this was kind of early fasciculations, probably that were not noticeable.

SPEAKER_07 13:37

Rick is on the board of directors of ALS Action Canada and also sits on the organization's advocacy and membership committees. The ALS Superfund is ALS Action Canada's Associated Cause Fund. ALS Action Canada is a patient-led organization that came to be as a group of patients across Canada felt that the world of ALS was too Ontario focused.

SPEAKER_03 14:01

At the time, there were there was issues with drug access, there was a disparity across the country in terms of the way patients were treated, diagnosis time, access to drugs, difficulties with private payers, insurance companies, difficulties with approvals going through Health Canada, through Canadian Drug Agency, PCPA, and it's down into the provincial registries, all this stuff. So they banded together and determined to form a patient-led organization. As many people understand, and as some of the leaders in the other provincial charities will say, a patient-led organization can say and take action in ways sometimes that a society can't because of the nature of the organization. Being patient-led, I think there's almost like there's permission for you to be a little more feisty, a little more vocal, stronger in the way you bring the message across than uh than some of the societies are able to do. That's not to say they don't fight as hard, they certainly do, but there was a really strong feeling amongst a number of people that more needed to be done, and the only way to do that was by being a strong patient voice. And at the same time in the US there was a a movement happening as well with uh Sandy Morris and the Morris principles around this idea of nothing about us without us. Meaning patients needed to be more involved, have their voice heard in more places, you know, not have this sort of stratified world of clinicians and research, and that had nothing to do, patients were kind of an abstract, you know, that people living with ALS and our lived experience was really, really important to bring into the dialogue. So that's how it came together.

SPEAKER_08 15:40

ALS Action Canada was involved in letter writing campaigns and lobbying, largely in an attempt to get access to some medications that were not readily available at the time and to encourage more clinical trials in Canada. Today, ALS Action Canada is a registered charity with a focus on demanding more tangible and urgent action for the ALS community. But the journey to become a registered charity was not necessarily an easy one.

SPEAKER_03 16:02

The process isn't complicated, but when you're a volunteer patient-led organization, we've all got other stuff to deal with, like ALS. And that's a full-time job in itself, right, for some of us. Um the charitable status was taking a while, and we discovered that we could raise funds partnering with another organization, that being an organization called Charitable Impact, which is a giving fund. And the beauty of that is that you can we could set up a mechanism where people could donate money to a cause fund, and then we could distribute that in the back end, sort of decoupled it.

SPEAKER_07 16:37

A cause fund is a pooled charitable fund that supports several organizations focused towards a specific cause.

SPEAKER_03 16:46

Charitable Impact was the I call it the banker or the mechanism to donate the money and retain the charitable status and issue the tax letters. And then the ALS Superfund was just the name we came up with, an umbrella name for the fund itself to say, okay, we're not asking you to give money to ALS Action Canada. We want you to donate to the ALS Superfund. And then our committees will work together with industry experts. We have a whole advisory panel of neurologists and specialists across the world, actually, some leading leading voices, to help us advise on where we could best apply that money.

SPEAKER_08 17:21

A lot of money has been raised for the ALS Superfund through the NHL, as Mark Curtin, former NHL player for Toronto, Vancouver, and Detroit, was heavily involved with ALS Action Canada after his 2018 diagnosis until his passing this past summer. Through the Alumni Association and through his friends from hockey, Curtin made tremendous strides in helping the entire NHL give generously to the cause of ALS. Maintaining momentum with the NHL partnership was a labor of love for Mark, and his legacy is one that ALS Action Canada is determined to continue.

SPEAKER_03 17:54

But it ends up, then this is where the Charitable Impact and the ALS Superfund become interesting because one of the means to raise money is 50-50 draws at hockey games. You've seen them probably if you've ever been to a game or seen it on TV. But the lottery laws, because they're considered lotteries, often require that the funds that are raised in a 50-50 be distributed within the jurisdiction. Like so Edmonton Oilers, Calgary Flames, the money has to stay in Alberta. We did some work with the Boston Bruins during the Four Nations tournament, and the stipulation was that the money had to stay in Massachusetts. And so we found partner we found partner organizations, the ALS Therapy Development Institute, ALS TDI, beautiful organization in Massachusetts. So money that we raised there, a lot of it stayed stayed there. That has led us to strategically say, okay, we're going to keep this thing called the Super Fund as the giving machine machine. And then we have ALS Action Canada, which is like the the umbrella organization that shepherds and stewardship.

SPEAKER_07 18:59

Yeah, no, that that that's great, Rick. Actually, your explanation right there is super helpful too. Very helpful, yeah.

SPEAKER_03 19:04

As part of a patient organization, we're very much, I think all individually come to that with a spirit of transparency and accountability because it's personal for us. Like we are the organization. And so we want to make sure that the dollars we receive are well stewarded and they go to appropriate causes that are representative of of the needs of the ALS community and that we're transparent and accountable. And then and as we go forward, our strategies being redeveloped right now. We're actively in committee working on our strategy. There's a lot of tensions, right? I mean, I know another charity organization in Canada that was able to raise a significant amount of money in their first year, was able to donate several hundred thousand dollars to research initiatives in Canada, but then they realized that that giving wasn't sustainable because of the family nature of the foundation and you know, giving tends to be a bit cyclical. Um you you can't keep going to the well sometimes, right? Um and so they pivoted and decided that they would take all of their funding and push it towards grants for families. Not necessarily huge grants, but certainly significant in the range of a couple thousand dollars to support whatever needs a worthy family could put forward. That's very challenging though, because the needs are so great, right? And and and how do you determine the means? You know, uh I met a family in in Manitoba and they're have a two-story house and the person with ALS is upstairs and they don't leave the house because they can't get downstairs anymore, they can't afford a renovation, and certainly an elevator is out of the question. And a stair lift becomes unworkable because you can't hold yourself up on it. And it's just a and you say, Well, get downstairs once then by being carried and then get a bedroom and a place to wash down there, but that that means you're kind of sleeping in the dining room and getting getting sponge baths for the rest of your life, which is not a quality of life that many of us aspire to, right? But just heartbreaking scenarios, you know.

SPEAKER_07 21:04

Yeah, yeah. Yeah. But but that's that's great work and that's that's a good explanation of yeah, some of the challenges that you kind of face for a charity in terms of determining where they're gonna provide their support, right?

SPEAKER_03 21:17

It's really hard, right? Because there's never enough money to do everything that needs to be done. And and hindsight you don't have the hindsight to say, Oh, that was a good idea or that was a bad idea.

SPEAKER_05 21:27

Yeah, yeah.

SPEAKER_03 21:28

You've seen how much money has been spent in ALS in research that hasn't it's borne fruit in the sense that we now know certain things don't work. Kind of a difficult pill to swallow, so no pun intended, for people to say, all this money and all this time, and we still don't have decent therapies, we don't have a cure, we don't have anything to even meaningful to s they slow the disease down except in certain very specific cases.

SPEAKER_07 21:54

That's right. Yeah. Right, yeah.

SPEAKER_08 21:55

In addition to their partnership with NHL teams, Rick's organizations are also associated. With other supporters such as the pharmaceutical company AmyLex, Matamy Homes, and Canadian Tire, among others. We asked Rick how these other organizations provide support to the ALS community.

SPEAKER_03 22:11

We're trying to be very careful about not ever putting ourselves in a position of appearing to be beholden, influenced, or otherwise uh biased by the donations. Okay. A commercial company that donates money, it's often because there's a connection. There's somebody in the ALS community who worked there or who knows somebody there, or some of the leadership in that company, or their particular charitable bent has caused them to feel generous towards the cause of ALS. And then with the pharmaceutical companies, very careful on the amounts and under what terms we accept those. It's usually for something practical. Like if we're going to have a lobbying event in Ottawa, which we've had one by ourselves as ALS Action and one together with the LS societies across Canada, as you know, we'll accept a donation to help pay for sandwiches or pay for transportation in hotels or something practical. So it tends to be very directed, like very specific. Here's some money to do this thing. And we're also trying to walk a very clean line in terms of not endorsing any particular company or initiative or or pharmaceutical effort. We're not qualified to make those endorsements. And there are places in the world where the charities are called on to be the ones funding some of the research, like really directly, in in lieu of government funding, perhaps. Or you know, endorsing a specific therapy that's come out of a a country-specific university effort and they feel a little bit more attached to it because it's it's local and and pushing those.

SPEAKER_07 23:47

Yeah, like regardless, we have to try to make sure that whatever is coming forward, that investments are made in that because it truly has a lot of promise, not because my friend owns the company or my friend is the researcher.

Accessibility in The Home

SPEAKER_03 24:02

Absolutely. Basically, right. I mean, we we live in a country where we have a we're blessed to have a very good medical system, obviously, lots of places where it can be improved on and reasonably funded in the sense that most of our normal needs are generally satisfied. But when you start finding out that your clinics sometimes, you know, they would they would love to have another occupational therapist or even a first occupational therapist in the clinic, but they don't have the funding to pay the salary. Or if you give them a donation, they can only pay the salary for the first year and they don't know how to sustain that over five years. Then you start to realize how granular and how challenging the funding models are for medicine and care in Canada and elsewhere.

SPEAKER_07 25:17

Andrew had to move and make modifications to his new home to create an accessible space, something that he found was quite difficult due to the lack of resources available to guide him. Rick was also forced to move after his diagnosis, and we wanted to know how his experience compared to Andrew's.

SPEAKER_03 25:41

The first one was just the mental one of the place you live in, the place you're comfortable at, you know, well reach a point where sometimes you say, I think it's time we move, and there's a bunch of reasons, and everybody can get their head around it. When you are looking at moving because a disease has put you in a position where the house you have just isn't suitable, then it becomes uh much more challenging. And because it's tied to your lifestyle too, right? Well, we had a call yesterday in our support group, and one of the fellows uh lives on an acreage in in Alberta and has animals and kind of a rural country living. It's a whole different game than urban living. And urban living in Toronto is way different than urban living in the suburbs or the outskirts of Toronto. You know, my friend in Regina, Terry, he's like, Ricca, it's Regina, it's really cold here. I don't go out in the winter, it's just too cold for my body. So there's that context. Like you'd say, well, we should all just move to a warm climate for starters and and live in live together in a fully accessible shared complex, like an apartment building townhouse complex or something. And there are those. There's uh one fellow who had ALS who he was had some engineering architecture background, and he got a uh fellow who was a pretty well-off guide who funded the development and building of this whole accessible apartment building. I think it's in boss in the Boston area, and it's just a phenomenal idea, right? And I think in some countries they actually have government initiatives to support building accessible housing for that cross-section of society, which is way larger than just ALS. Like my local Costco has 15 or so accessible parking spots. Can't ever find a spot that's open. Maybe there's just too many old people where I live, but but um it it it's interesting, right, when you try to navigate.

SPEAKER_08 27:28

Rick wanted to stay in his home, so he looked into installing an in-home elevator. This would have been a sixty thousand dollar plus investment, but a positive one, as in-home elevators are in demand for multi-generational living, adding value to your home. However, Rick found that his house just wasn't suitable for that investment and it was out of his family's price range. In addition, Rick's wife, Joyce, was concerned about having to carry the burden of maintenance required for their current home. So the pair decided they had no choice but to move. Rick was able to complete a series of renovations in the home in preparation for selling. But one of the most difficult things for him was cleaning out the garage full of his things.

SPEAKER_03 28:04

So that was a a whole journey for me of letting go of stuff that had accumulated. But it was funny because as I was saying, I went to a an Indigenous seminar this morning, and in the closing, they read a poem by a fellow whose name I can't remember, it's just out of my reach here. But it was about we are all our stories, and made reference in the poem to you know, the accumulation of possessions has really got nothing to do with it. And for a long time in our lives we we may pursue material wealth and stuff and and buying things, and then the curse of Amazon, you know, it makes this so easy. But when you you get into a situation where you're losing motor function, you're facing a terminal illness, your whole idea of materiality and what's important to you changes dramatically, but it's a process of letting go.

SPEAKER_07 28:54

Rick knew he needed a bungalow, and there weren't many of those available where he and Joyce lived in Mississauga, so they relocated to Burlington. The home they purchased was built in the 1950s, creating a whole other set of maintenance issues requiring renovations.

SPEAKER_03 29:11

We had the house renovated for accessibility, but some of the things aren't real obvious. Like, where should the grab bars go? Is a grab bar behind the toilet useful when you're trying to get on the toilet from a wheelchair that's beside slash in front of the toilet? And you're using a transfer board or you're on a once you're using a hoyer lift, grab bar is kind of irrelevant. Where should they go in the shower? We we managed to make a roll-in shower with uh like a complete wet room kind of thing. Pretty small, but it works.

SPEAKER_04 29:40

Okay.

SPEAKER_03 29:41

And but so I had to research a bunch of that on my own because my contractor did his best but didn't have that prior knowledge of how to build for accessibility, and they're they're hard to find. We consulted with a real estate agent who was specialized in accessible properties. Um, but in the end, uh my dear friend Mark Curtin, the hockey player, was also a real estate agent, so he and his wife Lisa uh helped us with, and and of course, you know, there's sort of comfort in that uh because he also knew what ALS was all about, and she did too. So a lot of details that you had to fuss through, and YouTube was good and community was good, right? Asking other people what they'd done. And at the time, a lady named Teresa out in Seattle, her and her husband, who has ALS, started a YouTube series interviewing people about accessible design things, like stuff you don't think about, like the register grates on the floor for your furnace if you have forced air heating. Um you drive over those with a 450-pound wheelchair, they get kind of bent and you don't want to fall in the hole. So we have all of our registers are uh a special kind that's kind of flush with the floor and very clean and able to support the weight. But so I became a little mini subcontractor during the renovation, you know, trying to finesse all those things. And our we we actually had a lady who was uh interior designer help us, she came up with some brilliant things because our hallway wasn't big enough to turn into the bathroom with the wheelchair, like there wasn't enough space to make the turn, even with a 36-inch door. So she came up with the idea of knocking out the wall there and putting smaller double doors so I'd have a a swing space, which turned out to be a huge bonus because that's now also my my semi-private hospital room uh in the sense that we have a couple of adjustable beds in there. But you know, you accumulate a lot of stuff with ALS too, equipment. So you can't park in the garage because you know we need to.

SPEAKER_07 31:32

Yeah, you need room in there too. Through the ALS clinic that you go to at Sunnybrook. You do you see an occupational therapist there?

SPEAKER_03 31:39

My clinic is uh pretty amazing in that it's a very full multidisciplinary clinic. Not all of the clinics in Ontario, not all of the clinics in Canada have that same uh depth of service, although many do many do. And the OT I think is essential in my view.

SPEAKER_07 31:57

Yeah, I mean I do too, and I just I wondered like your OT if if that was a person who did provide some help in terms of figuring out the things you needed to do in your home.

SPEAKER_03 32:07

Well, it's interesting now that I'm at the stage I'm at, so the answer is yes, absolutely, but the clinic OTs don't come on site. Um community OTs will.

unknown 32:16

Okay.

SPEAKER_03 32:17

And so um when I started engaging with in Ontario Health at Home, which is the entry point agency that you know fronts all the services that are delivered by the Ontario Healthcare System for home care. Uh community OT came to the home, did a whole we everything was done by this point. But had I known, we probably could have consulted with them. My daughter's an OT though, so we we were able to tap into her family into the family resource as well. She was helpful in in providing resources and advice also.

SPEAKER_04 32:47

Yeah.

SPEAKER_03 32:47

Um but OTs like every other are are specialized too. And not not every professional has experience in all aspects of things because they may work with children or they may work with adults with learning disabilities or whatever, so it's the needs are different.

SPEAKER_07 33:01

Yeah, not everybody knows about what the needs of an ALS patient necessarily, like not everybody that's an OT. Yeah.

SPEAKER_03 33:07

But the O OT community has just been phenomenally supportive. Um very delightful experiences. And the and then this week, because I started with PSW service, personal service worker support at home, one of the nurses with the firm that's providing the staffing for that came to the home as well to do a an inspection from a through a nurse's lens. Very similar kind of things. Like, is Rick able to take his medication? Does Rick have a safe place to toilet and bathe and and all these kind of things around my personal safety and the safety of the workers as well, right? We can't put them in a situation. I mean, there's very subtle things like um we can go all go to the a local furniture store and buy an adjustable bed. But if you're gonna have workers come into the house to help you uh be turned in bed, be dressed in bed, be bathed in bed, be exercised in bed, the the bed needs to be able to raise to a height that they can work safely without hurting themselves.

SPEAKER_04 34:03

Yeah, right.

SPEAKER_03 34:04

Adjustable beds because typical consumer adjustable bed doesn't raise up like a quote unquote medical bed does. So these are things you don't think about unless you ask.

SPEAKER_00 34:14

Right.

SPEAKER_08 34:15

Right, absolutely. Rick also found his OT very helpful in regards to wheelchair fitting. The kinds of power wheelchairs often required for a person with ALS are expensive devices in the price range of your typical vehicle. Thankfully, most jurisdictions provide some form of government support to help cover that cost, and private insurance will sometimes cover the difference as well. However, getting the wheelchair is only part of the battle. While it may fit comfortably to begin with, loss of muscle mass over time can drastically change the fit of the device.

Rick's Support Group

SPEAKER_03 34:44

Once you have a kind of a custom fitted power wheelchair, at some point it doesn't fit you well anymore because your muscles are getting weaker, so you need to get adjustments made. So at the two-year mark, I actually got a new backrest and some other modifications because it just was it's just hurting me. Now it's much more supportive than it is. Support groups are interesting. The first thing I discovered was they're not for everyone. There's a certain cross-section of people who are rightly in denial. They'll admit it, it's not a secret. And my own doctor at one point jokingly said, you know, it's not so bad, Rick. It's not a bad thing to have a bit of denial in your situation. Some people want to continue with their life as it is for as long as they can and not deal with that bogey monster in the background. And I respect that totally. And because when you come to a support group, there's a good likelihood you're going to run into people in the group and see people in the group that are in much more advanced states than you are. So I respect that fully, but we try and make the group that that I'm fortunate to moderate as open and welcoming and laid back and funny and casual and easy as possible to take a bit of the edge off of that. We have participants who are non-verbal, we have participants who aren't even on screen because they're you know they're trached and they're in a chair, and it's just not convenient to hold the device, you know. Yeah. And and we love it. The virtual meeting tools, of course, give you the ability to have a sidebar chat and closed captioning, which is really marvelous at interpreting the ALS voice some people get when their speech starts to become impaired. It does a very good job. So we try and make it as accommodating as possible. I think one of the small challenges is when you've got people using eye-gaze technology to type, it takes a while to get a message out. And so to leave space for them to be part of the meeting and not feel left out or not feel like they're not being listened to to give time for them to respond. If you see the question show up in the chat to be able to get the conversation back to that, because when you've got a bunch of people, it tends to be a bit freewheeling and hard to keep on track.

SPEAKER_08 37:12

The eye gaze technology Rick refers to allows people with limited voice and motor control to communicate through computer devices. Cameras or sensors detect reflections from the eyes, which then determine where on the screen a user is looking. Eye gaze technology can serve as a vital augmentative and alternative communication tool for individuals with ALS.

SPEAKER_03 37:32

So I started going early on, I started attending the ALS Canada, where I am. It's a monthly call. Some provinces they actually have them in person still, which is I think some people find that really, really good. I do attend some of the U.S. support groups as well, which are interesting because the the issues tend to be different, focused on, especially on the insurance side, focused on much different topics. But I've come to learn that you know the differences around how the way veterans are treated, both in Canada and the U.S., and how impactful our system of medicine and in and public health is compared to, let's say, the United States, where the experience is very much different person by person, state by state, depending on their income and their age and everything else. We have that here too, of course, age dependencies and things. But anyhow, the difference in in our group is that I'm not a social worker, I'm not a trained professional. Uh Mark Curtin was actually the moderator host of the meeting before, and he's got a lively sense of humor and a poorly defined sense of boundaries as a hockey player. I think the dressing room chatter was a little bit, you know, outside of some people's comfort zone. Uh we'd get into discussions of all manner of living with ALS, toileting in the extreme to how to travel with a uh uh bidet toilet seat to a hotel. Mark liked to tell the story of his hockey buddies who'd swapped out the hotel toilet seat for one of these portable um bidet toilet seats in much more detail than we wanted to know. But it became a recurring, recurring story, so to the point where we'd have uh almost a running gag at her because as soon as Mark started to take the topic that way, I'd cry out and and scream for him to stop and everybody to put their headphones on. Unbeknownst to me, he started saying, Oh, Rick, maybe you can schedule the next call for me because I'm really busy, my hands aren't working good. And then it was, oh, I can't make the next meeting. Can you moderate uh or host? And then it became, you know, can you maintain the mailing list? I sort of just slid into this role. It wasn't what I was looking for, wasn't what I was necessarily comfortable for, but now that we've sort of developed our guidelines, you know, it's really worked out well for those who choose to attend. And anybody who wants to attend can just send an email to community at alsactioncanada.org and I'll pick that up uh hopefully quickly, or just to Rick at alsactioncanada.org and we'll add you to the list. There's no obligation to attend, there's no obligation to speak. People could have their cameras on or off, although most people have them on because we become quite good friends virtually because we're sharing intimate details of our lives and our existence with each other. It's a very vulnerable space, right?

SPEAKER_05 40:18

Sure.

SPEAKER_03 40:19

Not a lot of crying in our group because we try to keep things kind of positive and and upbeat and and we laugh a lot. And you know, there's a whole dark sense of humor that comes with having a terminal illness that can only be shared with other people with the illness. It doesn't go over well with friends and family so much, you know, but but amongst ourselves we can have a good laugh sometimes at our own expense.

SPEAKER_07 40:40

Yeah, that's good. Rick tells us that meetings with his support group range from as few as six to eight people to over twenty, depending on the week. Rick works hard to try to ensure his support group represents people from across the country, though this can be difficult as people can't always consistently make it to sessions, particularly in the final stages of ALS.

SPEAKER_03 41:04

I'll get emails from people. It's like Rick, hope this email finds you well. I won't be on our next call because, well, I'm choosing the maid option and I won't be around for the call or any of the future ones. And please pass this on to the community for on my behalf. Those are just heart wrenching because you come out of the blue. You're just sitting there and all of a sudden bing and there's the headline.

SPEAKER_04 41:24

Yeah.

SPEAKER_03 41:25

Or the ones that are if you've received this email, Rick, it's because I've already passed on.

SPEAKER_07 41:30

Okay.

SPEAKER_03 41:30

It's tough.

SPEAKER_07 41:31

Yeah, that is hard, Rick. Jeez. Obviously, you're developing relationships with these people and not just me.

SPEAKER_03 41:36

We're developing with each other. So it's the whole community.

SPEAKER_07 41:41

Yeah, 100%.

SPEAKER_03 41:42

The other week I got an email from one of my US groups that said, please don't read this email if you're not in a good space. Like, well, of course, we're all gonna open that one right away. And of course, somebody had passed on that we all loved and was a kind of a key person in a group. The other challenge then is dealing with that, dealing with the loss, helping give space for that in a meeting so people can talk about the person and and honor them a little bit as much as they wish. And then uh and then also recruiting. It's a great club. It's a club nobody wanted to join, but once you're in it, it's it's lovely. It's just such a beautiful community of people with with ALS. So supportive and so caring. But you gotta keep recruiting because we keep losing members.

SPEAKER_07 42:26

Yeah. Yeah. That's good. Like, you know, get getting the word out about it, right?

SPEAKER_03 42:30

It's difficult to explain to somebody who's just been diagnosed that there's a group and it's a community group and it's people just like you, and you can come and talk and like it's it's intimidating, right? It can be intimidating to be vulnerable and and be transparent in in community. But it's very, very powerful. I get messages from the partners, the caregivers, and it's reinforced in our own feedback during the calls that people really, really value these calls far more than I understand. In some sense, it's just a coffee chat. We hang out together for an hour and a half every other week. But people have called it my therapy session. We don't do therapy, we don't do medical advice when when we talk about these things, but and maybe that's in itself therapy, right?

SPEAKER_07 43:12

It is, it is, you know, there's that connection between you and the other folks, you know, which which for all of us just that social connection, but especially like sure, when when folks have ALS and maybe they can't get out the same way or friends aren't coming to visit as much anymore or at all anymore, all these sorts of things, right?

SPEAKER_03 43:29

That's an interesting angle, Harley, the whole issue of friends and contact. Because it does change, you know. You may have seen this if you know people with cancer or other illnesses, your whole social world gets turned upside down. I I don't know if you've seen that personally, but people don't know how to interact with people who are ill.

SPEAKER_07 43:47

No, you you're right, not everyone does. And if I just think back to my mom, like I mean, certainly my mom and dad's some of their best friends were like so important in their lives throughout the The entire ALS journey, like their next-door neighbors, Blossom Ivan, two of the most amazing people ever. And they they stuck by them through everything. And and other neighbors did as well. And other friends. I do remember there was one particular friend that my mom had. Um, my mom was pretty active, like she did a lot of tai chi and she she was into sewing, and she just was, you know, had friends in different groups. This was a lady who was part of the Tai Chi group, and I think she was about 10 years older than my mom. They kind of had this little friend group, right? And the other ladies just kept saying, I remember one of them coming up to me at my mom's funeral and saying, you know, the one woman she'd never gone to visit my mom. And and my mom had kind of commented on that, you know, I wonder how she's doing, and I miss seeing her, and you know, I wonder what she's up to and I should come visit because the other ladies did. But she just was struggling so much with this idea that, like, you know, she basically thought to herself, it should be me that's dying, but not Judy. She might have even been 15 years younger than than this friend. So yeah, this particular person, I can't remember her name. I I never met her. But yeah, this poor woman, I think, really struggled with it. Like it, you know.

SPEAKER_03 45:10

I understand it. It's like I I mean, I I was one of those people who didn't know how to talk to people with illnesses, somebody with cancer or somebody with a terminal illness. I what do you say? Like, hey, how's it going? You know, so and even when people ask me that now, it's like, hey, I'm doing pretty good, all things considered. And and I think people sometimes are afraid to ask questions like that they're burning on their mind about what is this like, and can you feel something? And do you hurt? And and what is it like how's your head and how's your face? And how is like all these things that people want to unpack. And not everybody has the courage to ask those kind of questions. So I try and use little tricks and techniques to let people feel at ease and know that they can ask and that I'm open to that. Um and part of that is just being positive and being upbeat about things. So I sometimes maybe exaggerate a little too much how well I'm doing when I'm not really, just to give people the permission to engage. Well, maybe not just like Flynn, but um a little older, he's better looking than me. But um but but you wouldn't know that you know I can barely brush my teeth anymore or or you know, can't can't stand up and all these kind of things, right? So it is interesting. And that's a real struggle for some people with Alice, the loss of their friend community. And the other thing that our community group does then is it I often hear people say, We can talk about things here that I can't talk about with my caregiver or I can't talk about with my family, and I so appreciate having the space to discuss that.

SPEAKER_07 46:45

But it it is a really wonderful like service, essentially, right?

SPEAKER_03 46:49

Like yeah it's well that's why I love your podcast so much too, because this is a way to give voice to no, it's a way to give voice to things that otherwise would be unsaid or un or not understood, and that that helps. That's part of the awareness, is just helping people understand. The most empathetic people I meet in my life right now are the ones who've also experienced something in their own life journey with parents or friends or something. And it it opens up this sense of empathy that if you haven't lived through trauma, perhaps it's a little bit more latent.

SPEAKER_07 47:21

It could be I I mean I definitely I could a hundred percent say for myself, like my mom's illness changed me significantly.

SPEAKER_03 47:31

Um doubt, no doubt.

SPEAKER_07 47:33

So yeah.

SPEAKER_08 47:55

The project is on display at Parkway Central Library in Philadelphia as of January 31st, 2026.

SPEAKER_03 48:02

It's remarkable. It's a story in its own, and I think it's not getting enough attention yet. Eric Brunner is a guy down in the Philadelphia area who uh married with kids. He has ALS, he was an artist, and so at some point he was moved to create some sort of tribute to reflect ALS. So his vision was to create this light panel, I think it's about eight feet tall, eight feet wide, of various faces of ALS. So he just put out a simple call on social media with a bit of a deadline saying, send me a picture of your face and I'll include you in my artwork. It was that simple. Tell me a bit about your story. I'm I'm putting this art piece together. So it's just a grid box with lights in behind, and then he has this 3D printing thing that he can print our faces in monochrome on a plastic panel, and that gets put up in the grid. There's this entire three-panel work that you can see on on Eric Bruner's uh Facebook and Instagram pages. It's in a gallery now in Philadelphia, just this weekend opened up as he was putting it together in his his garage with help of friends, and as he lost function, it took longer and longer than he imagined. And he had to crowdsource a little bit for some funding. But I think now that it's done, we'd really like to see that thing go on the road if uh if ever, if even possible.

SPEAKER_04 49:16

That's a great idea.

unknown 49:16

Yeah.

SPEAKER_03 49:17

But it's also been really rewarding to see posts from people I know in the US uh ALS community who've gone already in person and represented. It's just a really beautiful piece of work and uh yeah, just very touching. I don't know how impactful it is outside the community, but I think anything that brings witness to something is useful. And for Eric himself to be able to channel his artistic towards ALS has been probably powerful for him.

The East Coast

SPEAKER_07 49:41

Yeah, it's it's pretty beautiful. And uh in terms of raising awareness, what a great way to do it. So with cross-country equity and accessibility to ALS research and care in mind, one thing I've noticed is that there haven't been many participants from the East Coast in the Cali program over the past two years. I asked Rick if he had any thoughts as to why this may be. I mean, in the Cali, and I just wonder what you think about this. Like there's less participation from folks on the East Coast. So I just I just wonder if you have any thoughts about that, like why that might be. I saw for I guess it's ALS Action Canada, your your advisory council, is it?

unknown 50:38

Yeah.

SPEAKER_07 50:38

Um Dr. Colleen O'Connell's on there, so I know she's in she's in Nova Scotia, right? So yeah, it's just interesting to me. Like, why where are these folks?

SPEAKER_03 50:49

It could be just population density and it could be the ALS Societies of Nova Scotia, New Brunswick, the LS Society in Newfoundland. I believe they're doing a good enough job in covering the local community that maybe people don't feel the need to kind of extend beyond that. There's also the just getting the word out, I think. And then perhaps a little bit of there is still this sort of people don't fully understand what's the difference between my local ALS Society and ALS Canada uh or ALS Action Canada for that matter. So we're working really hard to try and foster collaboration from both from many sides uh to cooperate and and work together so that we're not duplicating efforts, we're not wasting resources, and we can we can you know work to our strengths.

SPEAKER_08 51:48

Currently, there are only a few medications approved by Health Canada for the treatment of ALS. One is rhylazol, sold under the trade name Rhilotec. This medication's exact mechanism of action is not fully known, but it's thought that it blocks glutamate signaling in nerve cells. Glutamate is a neurotransmitter, a type of messenger molecule released by nerve cells for cell-to-cell communication. When released in excess, glutamate is believed to contribute to motor neuron degeneration. As a result, reduction of glutamate levels is speculated to slow progression of ALS symptoms. Another approved medication is Edarovone, sold under the brand name Radicava. An oral formulation of radicava was approved in 2022, and while its mechanism of action in ALS is not fully understood, it is a known antioxidant and is theorized to reduce oxidative stress and motor neurons. Lastly, tofersin, sold under the brand name Calcodi, is a medication administered via spinal injection into the cerebrospinal fluid. Tofersin is specifically for those with ALS caused by the SOD-1 gene variant, a known cause of familial ALS. Rhylazole and Edivaron slow progression by a matter of months, not years. Therefore, staying up to date on new medications and clinical trials is crucial for the ALS community. Rick knows this as well as anyone, as he has worked with a team at ALS Action Canada to submit a patient input document to Canada's drug agency regarding Toferson. You know, for people who want to stay up to date on these kinds of things and want to get into this sort of research but don't have any experience with that kind of thing, I think it can feel very overwhelming. Like the idea for me, for example, of reading a paper on a clinical trial, it's gonna go over my head, is how I feel. So my question is if you have any suggestions or or resources for people who want to get into that but feel overwhelmed by the idea of it.

Rick's Passion for Biking

SPEAKER_03 53:36

I think there's a couple of avenues for sure. Taking advantage of the Cali, if you're in Canada, or the Curly, if you're in the US, and do the Niels program, which Cali was based on, is great if you can afford that investment of uh a bunch of days of your time to become smarter. I also deep dive by getting not textbooks, but but lay person, they're written by professionals, but they're for lay audience of you know, what what what are cells all about? What are prayons all about? What is the brain all about? And just trying to get a little bit smarter that way. We're blessed in our LS Action Canada group to have people uh pharmacists, people who've been involved with the drug industry, PhD level, so lots of bright lights and lots of regular folks who have other specialties who can you know bring all these ideas together and and help focus our efforts. I find personally webinars are phenomenal. Sometimes the content is very much over my head, but the Neels has webinars, what used to be the Northeast ALS Alliance, NEALS, now they're renamed because they're broader. Uh Everything ALS is an organization that has webinars every week. There's other ones put on by various ALS societies, and ALS Canada, of course, has uh an ongoing series of webinars with Dr. Dave Taylor that unpacks clinical trial stuff and and sometimes has special speakers on from the industry talking about recent developments. Your own neurology team or your own clinic team, obviously, can tell you about clinical trials that they're supporting in their hospital, provide you with the documentation around what's involved with that. There is a group run by a lady named Nadia Sethi, and it's the ALS Clinical Trials private group, which you could become a member of, which is a very good forum for discussing drug developments in a rational, sane kind of way with some very smart people. I really enjoy that one. There's a community on Slack that has been uh put together by the infamous Brooke EB, because she worked for Salesforce, which has a connection with Slack. So that Slack is just the tool, but there's basically an online community uh for ALS people that that everybody's free to join. It's fairly intimate. There's only about 1,500 members, and so we tend to develop online relationships there too. The very early clinical trials, the phase one, phase phase zero, phase one, phase two kind of things. They're not there to test efficacy so much as initial safety and dosage stuff. But there might be some signal that comes out of it that says it looks promising and that gets amplified a bit too much and and it's it builds false hope and and it gets very difficult for for people with ALS to say, is this real? Is this gonna happen? Is this gonna save my life? Not even and you don't want to be the person that says, Hey, even if it did work wonderfully, it's still gonna take many years to get through the regulatory approvals and get into market commercially. So this is part of the balance of getting involved in clinical trials too. So I've seen people involved in engaged in clinical trials without having all that prior knowledge, and I think that's okay too, because they trust their neurologist and they're at a place where they want to latch on to the hope that comes with being part of a clinical trial. That's not wrong, but they are first and foremost scientific experiments. So I think you know, understand your sources, make sure you're getting them from reliable places, and ask questions. Like many people, right? Got a bike as a kid, didn't think I could ride it, and all of a sudden I looked behind me and my dad wasn't holding onto the seat anymore. And I was like, I'm riding, I'm riding. Now I look at my grandkids in age two or three, and they're using these bikes without the pedals, and they're up on two wheels and not using training wheels or anything, so it's pretty exciting to see the cycling continue generation after generation. I never was into bike racing and stuff like that. I just wasn't a competitive kind of person that way. I did have a uh speed bike when I was a teenager.

SPEAKER_05 57:52

Okay.

SPEAKER_03 57:52

Some memorable things from my biking life were driving into a chain across the road in the dusk light and having the bike stop and me continue on over it. I survived that one quite fine. But um, and of course, biking in the woods is always really fun because you're navigating all the stumps and roots and holes while at the same time trying to enjoy the lake and the scenery and uh where we used to live. There was a trail that had been cut in the woods by a bunch of kids with ups and downs and jumps. So I like going there with my grandson and filming him while he did all the daredevil stuff, and I just watched a lot better that way. But my final biking adventure came uh just prior to my diagnosis. We were biking in our neighborhood, and I was coming to the end of the ride, so I sat up on my seat, took my hands off the bars, and my seat post broke. And so I literally just fell off the back of the bike flat on my back at speed.

SPEAKER_07 58:47

Oh gosh.

Rick's Final Message

SPEAKER_03 58:48

Ended up ripping my um my rotator cuff. At the time, your adrenaline is surging, it was like, I'm okay, I'm okay. About a half hour later, it's like I'm not okay, I need to go to the hospital. Ended up getting surgery during one of the last surgeries that was scheduled in in the hospital before COVID, closed it down, literally the last one that day before they sent the nurses home. And then I'm trying to recover from it doing my little physio stuff, and I started getting the cramps and the physicians in bed. And so I'm trying to recover. I've still got I'm supposed to be taking it careful, and the cramps in my legs were so bad that I had to fall out of bed on my knees and my legs, my arms stayed up on the bed, and it was so painful. To this day, I wonder whether I didn't damage it a bit, but any neither here nor there. But uh so cycling at ALS come kind of full circle. My only regret is I never did the velodrome. In Milton, Ontario, there's a velodrome that you can you could uh go and get an assist to go around the course. That would have been fun, but uh yeah, can't look back, right? Gotta be positive.

SPEAKER_08 59:59

Before we parted ways, Rick left us with a beautiful message of hope.

SPEAKER_03 1:00:04

Hope is all we have, so I think hope is hugely important. Dr. Richard Bedlack, uh, North Carolina has a whole webinar uh series that he or message that he keeps delivering about how important hope is and a positive outlook and uh remaining positive and surrounding yourself by a supportive community is to managing the disease. It's really important. There's a lot of downsides, there's lots of things to deal with, there's challenges every day, both inside the home and with the system, you know, in terms of support and medication and access and insurance and costs, incredible costs. But we gotta stay positive and gotta have hope and keep fighting for the cause. The things I do today aren't probably gonna benefit me personally in terms of advocacy or fighting for access for drugs. But I feel like I'm investing in the future lives of people who come in the future with ALS and as we fight for a a world with a cure, fighting to end ALS.

SPEAKER_08 1:01:04

Absolutely. Incredible. Okay, love to hear it.

SPEAKER_07 1:01:07

That's a nice thought to end on. Thanks, Rick.

Debrief & Outro

SPEAKER_08 1:01:10

Absolutely thank you, Rick, very much. How was that conversation for ya?

SPEAKER_07 1:01:24

I mean, it was fun. Yeah, I mean it was, and I I you know, I really want to understand more about ALS Action Canada and the ALS Super Fund. And Rick definitely his explanation helped me. Helped me to kind of get get get a bit more of a handle on that.

SPEAKER_06 1:01:43

Yeah.

SPEAKER_07 1:01:44

I I do love my bike. You know, I wasn't sure if he was gonna say he was more into cycling, like he was a cyclist and maybe he was more competitive with it, but no, he's just just more like me with my bike, you know.

SPEAKER_08 1:01:55

Yeah, and I like too that you know, even though he's not able to cycle anymore, it sounds like he's still able to get joy out of the sport or or out of that hobby through his his children and his grandchildren, and and that's pretty awesome.

SPEAKER_07 1:02:09

Yeah, it is, yeah. Yeah, and I like hearing about the support group that he moderates. Just sounds like a a a great spot for folks who are looking for for that kind of social support, right? Um, that have ALS. So Yeah.

SPEAKER_08 1:02:25

Yeah, absolutely. I mean, we talked, I I can't remember if we spoke about this with Andrew, but I know for sure we talked about it with Leah, is the the way that ALS can be isolating. It's a very isolating disease. With Leah, we were speaking more specifically about caregivers and being isolated as a caregiver, but that's perhaps even amplified as a person with ALS, especially as you grow later in in your disease and if you're you're more confined to your house or to your bed. Yeah, that's very isolating. So for people in in that position or at any place in the progression of their disease, being able to get on there and do something social with other people is super important. So I think it's it's great that it's something online so it is more easily accessible. I like that Rick talked about, you know, the ways that he's very careful when he's moderating to make sure that people who are using different forms of technology to communicate are being given um an appropriate amount of time to speak and and be invited into the conversation when there are still people who aren't using any devices to speak and and can speak with more ease.

SPEAKER_07 1:03:31

Yeah, yeah, for sure. Yeah, it it it must be a challenge, but a challenge that, you know, they focus on. Like they they he's doing his best to make sure he keeps on top of that so that everybody's voice is going to be heard.

SPEAKER_08 1:03:46

Yeah. And I think it sounds like that that's a very important thing for for Rick as a person and for ALS Action Canada is to make sure that every patient's voice is heard in the capacity that they want it to be heard in. And Rick is doing a lot of incredible things. I we didn't even get to touch on everything that he's done or or is doing uh because there's just so much of it, and he's pretty darn good at talking about it.

SPEAKER_07 1:04:13

He does like to talk. He likes to talk, which is awesome for a podcast.

SPEAKER_08 1:04:18

It is, it is.

SPEAKER_07 1:04:18

Thank you, Rick.

SPEAKER_08 1:04:20

Thank you very much, Rick.

SPEAKER_07 1:04:23

That brings us to the end of today's episode of Originals More Than ALS. We'd like to extend a huge thank you to Rick Sweep for joining us and sharing his story.

SPEAKER_08 1:04:34

For more information on ALS Action Canada and the ALS Superfund, go to ALS Superfund.ca. Please note the ALS Action Canada website is currently under development, so info on ALS Action Canada is currently being consolidated on the ALS Superfund website. Keep an eye out for when the independent ALS Action Canada website is up and running again.

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We recommend checking out the ALS Action Canada and ALS Superfund 2024-2025 Impact Report, available on the ALS Superfund website and linked in the episode description.

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To join ALS Action Canada's free online support group, you can send an email to community at alsactioncanada.org or Rick at alsactioncanada.org.

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For more information on Eric Brunner's project, Flickering Souls, Illuminating ALS, visit Eric BrunerArt.com.

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For more information on the ALS Therapy Development Institute, visit ALS.net.

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For more information on Brooke Eby's project, ALS Together, visit alstogether.org.

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For more information on the Northeast ALS Alliance, visit niels.org. That is NEALS.org.

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And finally, for more information on ALS and access to information regarding the Canadian ALS Learning Institute and other online Educational options, please visit the ALS Canada website at als.ca.

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Thank you so much for listening. Join us again next month where we'll speak to another member of the ALS community about their experiences and the passions that make them more than ALS. Bye for now.