Shawn Penno - What You Can, While You Can

"I want to do it. Give me a minute. I’m looking disabled, it might not be graceful, but I want to do it. Or at least try to do it.”

Shawn Penno is a bright light of positivity in the ALS community. After his diagnosis in 2023, Shawn has become an active participant in ALS advocacy and research, determined to move the needle towards a cure in any way he can. Guided by his mantra, "Do what you can, while you can," Shawn is a beacon of hope for his fellow PALS. Join us as we discuss post-diagnosis career shifts, clinical research, government funding, home renovations, and more in this episode of originALS: more than ALS. 

For more information on Everything ALS, the Everything ALS Health Tracker App, and the Pathfinders program, visit https://www.everythingals.org/

For more information on UBC'S Project HOPE, visit https://projecthopealsbc.ca/

For more information on BC's Move To Cure ALS, visit https://movetocurealsbc.donordrive.com/home

For more information on Ales for ALS, visit https://a4a.als.net/

And for more information on ALS, visit https://als.ca/

If you'd like to share your story on the show, or have ideas for what you'd like to hear us speak about next, send us an email at originals.morethanals@gmail.com. We'd love to hear from you!

Episode Transcript

Episode Reference List 

Transcript

Previous episode edit

Flynn 0:00

Before we get into today's episode, we'd like to clarify something shared in our previous episode with Rick Zweip. We stated that to date more than 100 genes have been identified that when altered can contribute to ALS. We worry this might have been presented in a misleading way, so for more context, 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. Without further ado, let's get into today's episode with Shawn Penno. We hope you enjoy. 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.

Land acknowledgement

Hayley 0:51

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.

Shawn 1:07

I did not want to quit whatsoever. I'm going to hang out as long as possible. I want to enable you, not disable you. Whatever mental, spiritual need they have, they're not alone.

Flynn 1:20

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.

Hayley 1:31

And I'm the other host, Hayley King.

Flynn 1:34

And today we're joined by Shawn Penno. Thank you for joining us, Shawn.

Shawn 1:37

Glad to be here.

Hayley 1:38

Joining us today is Shawn Penno. Shawn lives in North Okanagan, British Columbia, where he has worked as a care aidee for 25 years, helping others in his community. When he was diagnosed in September 2023 with Limb Onset ALS, Shawn made the conscious decision to continue for as long as possible the work that he loves and that means so much to him and his clients. Since his diagnosis, Shawn became involved with a patient-focused nonprofit organization called Everything ALS, where he volunteers as a pathfinder, providing support and mentorship to others affected by the disease. He has volunteered with ALS Action Canada and the Canadian Neuromuscular Disease Registry. Since graduating from the Canadian ALS Learning Institute in 2025, he has been very active in government advocacy and fundraising efforts for the ALS community. Shawn is amazing. He always shows up with a smile, a ton of encouragement for his fellow ALS community ambassadors, and a genuine love for the community. I'm just wondering if you can share with us kind of what the initial diagnosis looked like, you know specifically what were the earliest signs that something was not quite right.

Shawn 2:54

Yeah, that's always the big how to start, you know, when did it start? And it it even still, I don't exactly know when it started. It's one of those things where I had trouble cutting my fingernails. Like, man, I can't squeeze very hard. That's weird. You know, did I hurt something I overdo it? Blah blah blah. So I waited for, I don't know, a month, maybe two months, and I had other things I want to go to the doctor for. So I thought, okay, well, let's approach this subject. And the doctor does usual, you know, carpal tunnel, tennis elbow. Does this hurt? Does that hurt? And nothing was really obvious.

Flynn 3:28

A round of blood work revealed Shawn's B12 to be low. And this is relatively common amongst older adults, so Shawn was prescribed 1,000 micrograms of B12 daily and saw no changes in his symptoms after a month of following this regimen. At that point, he was referred to a physiatrist in Vernon who specializes in managing conditions affecting the skeletal and nervous systems.

Shawn 3:48

Even she was quite mystified, you know, you have this symptom, but not this blood biomarker, or you know, or vice versa, right? You know, no two things were correlating well. Right. So her best guess was something called thoracic outlook syndrome. There's a nerve that goes through your collarbone into your arms that with poor posture, it starts to get pinched. Maybe that's the cause of my weakness. So she referred me to physiotherapy. And posture type exercises, they were very helpful. I still do them today because I I do have bad posture and uh that really did help. But it wasn't the solution, something was still wrong. So the same physiatrist referred me to get an EMG, which is where they poke needles in you, they measure how fast your nerves are traveling. And she did notice that I do have carpal tunnel syndrome in both hands. So maybe refer me to a surgeon, and he, you know, that takes two months to get in. Look at that. Well, that that does seem true. We can try let's try a non-dominant hand first, my left hand, and see what happens. So I I went through a carpal tunnel surgery. Of course, still nothing really was getting better. But during that time of recovery, the EMG person called me back saying, you know, I've I've looked over your results, something isn't right. Let's do it again. So we do it again. And again, still something's wrong here. I'm gonna refer you to a neurologist in Vancouver. And that was when the big Aha came.

Hayley 5:19

Shawn's physiatrist didn't believe he had ALS, even denying the diagnosis when Shawn asked point blank if he might have the disease. He was then referred to a multiple sclerosis clinic, but after a month of radio silence, Shawn discovered the MS clinic had refused his referral, instead, referring him to an ALS clinic in hopes of ruling out an ALS diagnosis.

Shawn 5:42

They did the whole rigmarole of the testing, you know, two hours and more EMGs, and Mr. Penno, I'm sorry to tell you you have ALS.

Hayley 5:51

Yeah, yeah.

Shawn 5:52

Oh my god. My wife and I are both care aides. I work in the home, she works in a facility. And being care aides, we've both taken care of ALS patients. She sees them more at the end of life, like I try to keep them home as long as possible. When they're no longer able to stay home, they go to a facility. we've taken care of ALS pay.pa So she sees them more at the end of life. Like I try to keep them home as long as possible. When they're no longer able to stay home, they go to the acility.

unknown 6:07

Yeah.

Shawn 6:08

So if I get them, then she gets them. She's seen the end of life. I so she you know, she broke down completely like, oh my god, I know what this looks like. You know, emotions were like way up here.

Hayley 6:18

Yeah.

Shawn 6:19

So my first symptom was like May 2022-ish. And September 23 was my diagnosis. So like 16-ish months waiting, whatever. What could this be? You know, Dr. Google and up the wazoo that kind of thing. And to finally know what it was was a relief. It was a curse, but a relief that now we know we can we know what to treat.

Hayley 6:42

Or yeah. Or at least at least how to go forward. It's it's it's not good when you don't know what's going on and you know something is wrong. Yes, exactly.

Shawn 6:51

When it's a mystery thing that nobody knows what it is, well then how do you treat it? But at least now we have something. I'd say that was a big pivot for me. We're driving home from Vancouver and it's like, well, what do we do? Let's start writing down what needs to be checked off our list of things to do. Who do we talk to? Do we just quit our jobs and do our bucket list? Or do we stay and just keep on keeping on? And that's what we ultimately decided to do. I love my job. It gets my head space in a positive environment, as opposed to sitting at home and just dwelling on the negative, right?

Flynn 7:23

Shawn and his wife, Sabina, soon started looking into clinical trials for Shawn to participate in. There were a few options in Edmonton and Calgary, but nothing local to Shawn and BC. See, British Columbia faced a nearly 20-year drought of local ALS research after the retirement of Dr. Andrew Eisen in 2005, a pioneer of ALS research and care, whose work at the Vancouver GF Strong Rehabilitation Center was central in the shift from viewing ALS as a spinal cord disorder to a complex, brain-based, neurodegenerative disease. Soon, Shawn would become involved with Project Hope at the University of British Columbia, a program designed to reinvigorate ALS research in BC. We'll speak more about Project Hope and Shawn's involvement with the cause later on in today's episode.

Hayley 8:04

That was one thing I was wondering. I thought in your day-to-day job as a care aide, had you seen ALS in somebody before? I suspected you probably had, and I wondered if that, at least in your own mind, even though the diagnosis took 16 months, you had considered that a possibility yourself?

Shawn 8:21

It was on the list. Like say Dr. Google, you know, it could be this, could be that. And ALS fit a lot of those criteria. Not all of them, but a lot of those criteria. Yeah. And say nothing fit perfectly. Right. But ALS was definitely one of them, because that's one of those things where ALS has no diagnosis. You kind of rule out ABC and finally you got to, well, you know, based on this and that, it must be ALS, kind of.

Hayley 8:43

It it kind of sounds like I guess it was a neurologist or whoever you were being referred to at the MS clinic. They must have thought this based on the EMG or something that it was maybe more likely to be ALS.

Shawn 8:56

I don't know if you've heard or seen an EMG. I I have, yeah. It sounds like a radiostatic as you move your muscle. And they know what a happy muscle versus an unhappy muscle sounds like.

Hayley 9:08

Yes, yeah.

Shawn 9:13

As you're lying there you have no idea what all this means but so an MS person must know, well, that's not what you hear with a nerve for MS. That's something else.

Hayley 9:20

Upon further research, it was determined that an EMG is not used to directly test for MS. Rather, it is used as a test to rule out other potential diagnoses, including ALS, that may be causing a person's symptoms. We suspect that the MS clinic Shawn was referred to felt his tests at that point did not fundamentally rule out ALS as a diagnosis. And then also, Shawn, you just you saide at the beginning there, okay, like your first thing was like you're having trouble cutting your nails, so you're right-handed then.

Shawn 9:52

Correct. Yeah, it started my left hand, so I'm I'm with my left hand trying to cut my right nail and I can't squeeze. Like, well, that's weird. You know, that's yeah, yeah. Why am I getting weaker in this one hand? As time went on, that was my first complaint to the doctor was I I'm not just my muscles getting weak. Well, what's going on? But then coming back the second time, I was also getting cramps where, like, say you reach behind you to scratch your back, just a weird twist of your arm, I would get a cramp in my forearm as well as a weakness getting inside. So more and more things started to happen as time went on, and not until after my diagnosis, I started noticing my right hand as well. So it spread to both hands.

unknown 10:30

Oh, okay.

Shawn 10:32

Yeah, so it was slowly, slowly progressing, and still today I'm very slow progressor, but it's happening, right? You know, it's one of those things where it's starting to get harder and harder to get my hands above my head to wash my hair, or there's those little increments you lose it, you know, millimeter by millimeter.

Hayley 10:49

Yeah.

Flynn 10:59

Shawn became involved with our podcast during an important transitional period in his life, and that's the shift from full-time work to semi-retirement. While Shawn is still part of the OHS committee and is doing some office work, our conversation with him happened exactly one week after his final official client care day.

Shawn 11:15

So I'm still doing a little bit of office work here and there. Yeah, good. But as for client care, yeah, I've I've been saying it put up to pasture, which my wife hates that phrase, but yeah, and just trying to move on to the next phase of my career in a way, in a good way, is giving me more advocacy, right? So I'm more available to do stuff like this and listen to more podcasts and bug government more and whatever the case might be, right?

Hayley 11:40

Which I think government needs to be bugged a lot. So anyway, Shawn, you know, basically because your career, you know, really the main part of it has officially come to an end at this point. So you really are literally at the very start of kind of this life transition or a turning point just in terms of your work, right? So would you be willing to share with us a little bit of how that feels for you? And and has the diagnosis of ALS given you a different perspective on accepting change?

Shawn 12:13

Very complex mix of emotions. A month ago, I did not want to quit whatsoever. I'm gonna hang around as long as possible. They're gonna have to kick me out before I stop working, kind of attitude. And I progressed to say that, you know, I've been asked for more and more rest time, like time off between clients, or work two days, take a day off, work two days, and have a weekend. Now the newest suggestion is work one day, take one day off. If they can find me a job, companies have what's called a duty to accommodate that they have to try and find you work within their environment. I I have a meeting at the end of the month to discuss is there a job out there that I can do but to keep me employed. Yeah. And keep me off of the insurance system. Because once you go to long-term uh disability, you're now an insurance company's problem, kind of thing, right? They're they're paying you not the company, right? So to adjust that in my mind has been a long wearing down process that yes, I need the rest, I need to take care of myself, I've loved what I've done, but there comes a time when with the disease you can't do it anymore. And I I accepted that I've got to that point where I can do a little bit, but not enough to be productive on a full scale. I can do some clients, but not all clients. And that becomes a burden on scheduling. How do you pick and choose who to send Shawn to and not to send Shawn to, right? So yeah, I finally decided that you know it's time. And uh my wife keeps reminding me that I've got this wide scope of things I'm involved in. Let's take out the heavy, tiring thing of work and concentrate on things that you can do, right? So instead of dwelling on what I can't do, let's dwell on what I can do. And that's that's always been my mantra. Do what you can while you can.

Hayley 14:02

Do what you can while you can is a mantra that has applied to Shawn's ALS journey from the very beginning. He'd always planned on building a wheelchair ramp onto his back deck for his in-laws, and an ALS diagnosis was the push he needed to take on that project as soon as possible.

Shawn 14:19

When I got home after my diagnosis, I built a wheelchair ramp. A beautiful, like concrete pavers type ramp that curves around our pond. Made a nice wood ramp up to the deck, up to our door. It's wonderful. And it's it's aesthetically pleasing, but I had to do it while I could still do it. Right now, two years later, there's no way I could lift those things that I lifted way back then.

Hayley 14:44

Yeah.

Shawn 14:45

I did what I could to minimize future efforts while I could do them having right.

Hayley 14:52

Yeah, yeah. So that's smart. So that basically allows you to get into the house if at some point you end up in a wheelchair.

Shawn 15:03

A walker or wheelchair, I can still get into my house. We've always kind of designed our house with wider doors, we have a walk-in shower, just in case we're not thinking we would need it, always like say thinking ahead to what if the in-laws have to come uh visit or live with us or whatever. We would want to keep our in-laws out of long-term care and take care of them ourselves. So we need a house that is very well accommodated for that. So we've always renovated. I love renovating. That's my sort of my other side gig love that I have is I love creating things and doing woodwork, and I built half our house, kind of thing with my father-in-law, who was a contractor.

Hayley 15:40

Okay.

Shawn 15:40

Stuff like that. I love doing that. You know, that my my son called the visual progress. VP. Oh. Great VP that day. You know, yeah, you go from an ugly wall that's studded to now you got a drywall and it looks nice and clean. Beautiful VP, you know, that kind of thing.

Hayley 15:54

Yeah, yeah.

Flynn 15:55

Shawn and Sabina's experiences as care aides led them to center the need for accessible housing in their plans for the future, well before Shawn's diagnosis. This was fortunate for them, as renovating or moving to make accommodations for accessibility after a diagnosis has been a topic close to home for a lot of our previous guests. In fact, Shawn's work as a care aide has provided him with a lot of guidance and wisdom in several aspects of his own ALS journey.

Shawn 16:18

I I've got a couple clients who kept warning me even before my diagnosis that don't get old, don't retire. It's the worst thing I've ever done was retire. Because now all I do is sit at home and watch football or hockey. You know, I I don't have a side hobby. So their life is over because their work was their identity. And for me it was as well. Like that's that's what I did. That's what I love. It's my job.

Hayley 16:43

Yes, yeah.

Shawn 16:44

That's such a big part of your life to let that go.

Hayley 16:48

Yes.

Shawn 16:51

What are you now that you're not working anymore? What's your identity?

Hayley 16:52

So I think a lot of people struggle with that, just like just with regular retirement or semi-retirement, or just what do I do after I retire? Yeah, yeah.

Shawn 17:02

Do you just travel? Do I just go shopping every day?

unknown 17:05

Yeah.

Shawn 17:05

What do you do through your day, right? You gotta have something to get up for.

The importance of self-advocacy

Hayley 17:08

Yeah, that's right. Some something that's fulfilling, right? I consider finding a fulfilling path in the face of life transitions to be a form of self-advocacy. Shawn, too, believes it is a crucial life skill and one that everyone should work to develop.

Shawn 17:34

Everyone needs it, everyone has it in different degrees, but yeah, it's one of those things where it's very hard sometimes for some people to self-advocate, you know, they're too shy or they're not knowledgeable enough on whatever subject it is. And it's so important that the only one who cares about you is you. Everybody's busy, everyone's short staffed, uh, whatever the excuse might be. Yeah, if you want or need something, you've got to go out there and do it, or ask, or you know.

Flynn 17:59

Like, you know, it's a skill that takes practice too, right? It is it something that you feel kind of came naturally to you, or did you have to r really sort of hone that craft after your diagnosis?

Shawn 18:10

Well, it's been something I've been developing over the years. Like I saide, I've been a shop steward for for years in OHNS, so I've been advocating for other people. And um now that my my parents and in-laws are getting older, you start to hear, well, I went to the doctor today and he saide blah blah blah, and they just take it at face value. And but us knowing more about healthcare, well, why didn't you ask for this? Why didn't you insist on that that? And uh yeah, I we have to instill that upon them to make sure they get the proper care they they need. But you can't always be there to hold their hands, so I'm getting them to self-advocate because I I know I have to do it as well. You know, when I go to the doctor, I have to make sure I have the questions I want answered ready to go. Make sure you get the right answer, you know, not the right answer, but an answer you understand. You know, like maybe you can't get what you want, but why? You know, why is that not practical or feasible or whatever, right?

Hayley 19:06

I gotta at least get an explanation. And since our time is usually really limited with our doctors, like, yeah, you're right. You really should have questions written down so that you don't forget something and you take advantage of your opportunity while you're there in front of them.

Shawn 19:20

Right in front of that expert, exactly. Yeah, yeah.

Hayley 19:23

Yeah.

Shawn 19:23

And unfortunately, as we get older, that is the best way to do it, is you write it down, put it in front of you so you don't forget. You know, you get talking about XYZ topic and you forget to ask about that really important one.

unknown 19:33

Yeah.

Shawn 19:33

Is it down? It's so easy to uh skip over it and oh my god, you know, you walk out of the office and I forgot to ask about the one thing I really wanted to know.

Hayley 19:42

Yeah. Or or sometimes it's upsetting or or you're emotional about whatever the thing is, right? So again, if you if you had it written down, it's definitely gonna help you.

Flynn 20:00

As part of the goal of continuing to advocate for himself and others, Shawn became involved with Everything ALS, a wonderful organization with a patient focus dedicated to the support of research and technological innovations in the journey to find a cure for ALS. Everything ALS offers, quote, an open data platform for direct engagement with patients, caregivers, researchers, and drug companies. End quote. I asked Shawn, what is meant by an open data platform and how does this format contribute to the organization's overall goal?

Shawn 20:29

It's a growing movement that we need to open up data to everyone who needs it. Like you've got uh everything else can you know is collecting this kind of data, Access ALS collecting that data, the CNDR is collecting that data, but we need to somehow cross-communicate that data to make a bigger pool. The more data, the better things like AI can look for clues, right? So it's an open data source that any clinician can get a hold of it by applying that it's an open database. So they're more uh concentrated on stuff that's remote. How do you collect uh speech, how do you collect movement via sensors that you you uh you can do at home by yourself? Wearable technologies, there's speech study you you go online, there's an assistant you talk to just like we're talking, and you repeat this sentence and that sentence, and over time they have a longitudinal database of how your speech has progressed or degressed. They've got all this data that they're trying to create biomarkers on.

Hayley 21:31

Biomarkers are biological measures that provide real-time information into processes in the body and a person's health status. Validated biomarkers that are specific to ALS are urgently needed to help clinicians diagnose ALS more accurately and to understand and track disease progression. In clinical trials, ALS biomarkers could greatly change how we measure an individual's response to potential treatments, ensure participant groups are balanced and even predict who might respond to a treatment. Without the use of biomarkers in clinical trials, researchers cannot know for sure if the potential treatment changed anything in the body biologically or understand why a trial has failed.

Shawn 22:16

Their speeches example, they've actually applied to the FDA to make it an official biomarker in a trial, to look at your speech to see is it getting better or worse because of XY drug, as opposed to looking at neurofilament light or whatever those blood biomarkers are, right? So yeah, they've got lots of good stuff coming. And um, yeah. So they're they're trying to really share and even with us as patients, I can look on my website, on my my portal, to see what has my data done over the year I've I participated.

Hayley 22:48

Okay.

Shawn 22:49

And it actually gives me something I can take to my doctor and show, well, this is my speech is staying steady, or my FRS has only gone down by one point in six months, or whatever the case may be. So they're sharing it with us and they're sharing it with drug companies to say, well, we've got all these patients who are trial ready. You know, that we've got all this data for you. So yeah, we're really trying to be very open and trying to find the most efficient way to get from A to B. You know, how can we change the rules or modify them to get to our answers quicker?

Hayley 23:25

So basically, like this open data means I mean it's available, but it's not public.

Shawn 23:32

Yeah, so have to apply it. So it is open to anyone who wants to use it in a reasonable way. But yeah, it's not an open thing where I can just go in and look at all their data.

unknown 23:40

No.

Hayley 23:41

Yeah, yeah, yeah, exactly. Okay, so that that's good to kind of understand. That voice study that you're talking about, like that was something actually that I contacted them about. Because I remembered you saying at some point, like during one of our CALI meetings, that you know, whatever the regulations are, things had changed so that like somebody who's Canadian could participate in their US voice study.

Shawn 24:07

That's changed this year where they are opening up their platform to uh Canada, Australia, and the UK because each country has their own rules around confidentiality and how data can be collected and shared. There's another group called ALS TDI, who also has a study that they are participating in Canada and they've found a way to rewrite their protocols that is blinded in such a way that they can't collect data in the in Canada and share it in the US. Whereas everything ALS is just getting to that point now.

Hayley 24:41

Because I I spoke to somebody at Everything ALS about it, and then as soon as I saide I was Canadian, she was like, Oh no, you can't do it yet. So I guess they're not quite there, but they're getting there.

Flynn 24:52

Exactly. Yeah, good. Shawn has worked with the Canadian Neuromuscular Disease Registry, helping with the development of a Canadian chatbot for an app specifically to support people with ALS. We asked Shawn for a little bit more information about this, as well as some more information on a similar app being developed by Everything ALS called the Everything ALS Health Tracker app.

Shawn 25:12

So I was a part of discussions about what should be in that app. And uh it was like an hour interview of what's important to me as a as a patient. But yeah, so the Everything ALS app has some basic functions like that, where you can track what your ALS FRS score is. They have a nutrition app where you can track what you're eating, how many calories you're taking in, it calculates your BMI, how many uh inflammatory foods you're eating versus non-inflammatory foods.

Hayley 25:42

The ALS functional rating scale revised, or ALS FRSR, is a scale commonly used to track functional decline in ALS. It covers 12 categories of functioning related to ALS, including, but not limited to, speech, salivation, and respiratory insufficiency. Five potential answers are provided in each category, each assigned a zero to four point value. Patients select the answer that best corresponds with their ability to function in each category, with a lower total score signifying more advanced functional decline. In addition to the ALS FRSR, the Everything ALS app will also include the Rasch overall ALS Disability Scale, or the ROADS. ROADS involves 28 questions regarding a patient's function, with answers existing on a scale of 0 to 2. 0 meaning you cannot complete the specified function, 2 meaning you can complete the function normally, and 1 meaning you can complete the function but with difficulty. Although the ALS FRSR and ROADS have performed similarly in observational studies, ROADS has a higher point total, suggesting it may have the ability to more accurately represent granular clinical changes experienced by PALs over time. Shawn is excited for the Everything ALS Health Tracker app to include both scales for patients to use.

Shawn 27:11

And they have that built into the app where they actually show you pictures of, you know, can you squint your eyes shut? Can you smile? Can you and they'll have a little graphic of what you're supposed to do? Can you do this, yes or no? And that kind of thing, right?

Hayley 27:24

Oh neat. Yeah.

Shawn 27:25

Yeah.

Hayley 27:25

Yeah, great.

Shawn 27:26

So I'm hoping the Canadian version will be very similar where they'll have even more kind of data points that they're collecting. And the chatbot on everything ALS concentrates on their expert talks. So every two weeks they have some expert talk about whatever their drug is of choice, and they have that hour-long talk. So that gets archived and the chatbot only draws from that information. So if you ask a question about something not in the expert talks, it will tell you that you know we don't have information about that. Or we have we've talked about it in this thing, and this is what it refers to, but this is all we know so far. So it doesn't look at the internet as a whole, it only looks at that specific pot of information. So the CNDR one, I'm not sure what their limitations are going to be me, what pot of information it's gonna pull from. So we'll see what that looks like. I I don't believe it's out for release yet. I was hoping to be part of that beta tester group to test out this chatbot and whatnot, but I haven't heard uh the University of Calgary, I believe, is is spearheading that.

Flynn 28:36

I will say that that's relieving to me, I think, to hear a little bit more about how that chatbot is gonna work and and where it's drawing that information from.

Shawn 28:44

Yeah, it's very specific on where it gets this information from. So we believe it's more trusted than just pulling random stuff off the internet that may or may not be vetted.

Flynn 28:54

Yeah, yeah, exactly. Shawn is a part of the Everything ALS Pathfinders Program. Officially launched in 2024, the program started as a newsletter in 2023 that highlighted how community members could benefit from Everything ALS. Over time, this morphed into the Pathfinders program, where via email or the Everything ALS Pathfinder app, community members can reach out to a Pathfinder using a list of bios provided on the app and website. Patients can send messages to a Pathfinder of their choice for support at any time, physical, emotional, or spiritual. Shawn remarks that the program is still in its infancy, and he's excited for the day that thousands of ALS patients use the service rather than hundreds.

Hayley 29:33

I was again thinking, Shawn, like your career as a care aide, this probably makes you very well suited to this role of Pathfinder. Wondering, you know, kind of like what specific skills do you think you've developed in your work that that are helpful in your role as a pathfinder?

Shawn 29:51

I I have a lot of empathy for people's suffering and for whatever they're going through from my days as a care aide, right? So my motto back in the working days was that I want to enable you to do what you can do, not disable you. So some care aides tend to want to do everything. You know, uh let me help you with that shirt, let me put yourself, let me do you know, they're doing everything for them.

Hayley 30:17

Okay.

Shawn 30:17

Whereas I want them to do what they can, and I will just help with what they can't do. And that's a big area of respect. Where you're respecting their needs, they have to keep putting their shirt on or putting the socks on the best they can because there may be days we can't come. If I can keep them doing what they can, they're gonna stay in their home longer and be happier because they're in a space they love versus if I take away all those abilities and do anything for them, now I've disabled them and they might go to long-term care even faster. That that kind of attitude. So I've always taken that forward in my life and my you know, even as a patient now, I'm having trouble accepting that help because I want to keep doing it myself as long as I can, and it drives my wife crazy that she sees me struggling. Let me help you with that. No, no, I want to do it. Give me a minute. I may look I'm looking to see. Well, I don't look you know graceful, but I want to do it or try to do it, right? Before I ask for help. Yeah.

Hayley 31:21

Boy, your your job's really it really is helping you out a lot. I mean, you've helped a lot of people over the years, but it's it's a benefit to you now as well.

Shawn 31:33

25 years of really loving my job, like when I first started when I came out of school, I went into long-term care. That's where most of the jobs are. I I liked it. It's the same kind of work, but it's also very, very busy. You're taking the same eight patients, you're looking at the same four walls every day. There's always a bell going on that someone needs help. So you're cutting short this care so you get to that care. It's very busy. Is it's you've got to be very disciplined in time management. Right. One day I got headhunted by a community care nurse saying, We really need a male, where there was all females at the time, to do male bath. You know, some of the clients were getting a little handsy, and if you have a guy doing a bath, now they're not gonna be handsy anymore. So that's kind of how I started, and they it slowly built into a full-time job. And I really love the fact that you get a half an hour, 45 minutes, or whatever it is, for that client, period. Right.

unknown 32:27

Yeah.

Shawn 32:27

So now you can focus your care, your attention on that one person, and then you get to go to your car, you get a second to sort of breathe, you drive to the next time, you get the fresh air, and now you have time for that patient. You can leave that patient behind, compartmentalize, you're done, now go to the next time. And give them all your attention. And I really found that satisfying. And being a small town, you start to see pictures on the walls of grandkids. Oh, and I know that person or that person. And you start to put that web of of familiarity together, and they you become part of their family.

unknown 33:01

Yeah.

Shawn 33:01

Because you know their grandkids, or you've gone to school with so-and-so and and you know, I know hundreds of people in town just through my work.

Hayley 33:10

Yeah, exactly. And I would imagine being in long-term care, well, you're gonna see the same people, I suppose, every day, but for briefer periods of time, you don't have as much time to talk to them. Versus if you're in their home and you've got that 30 or 45 minutes, whatever it is, so you kind of get to know people a little bit better, you must. It's through the Pathfinders program that Shawn continues to make these deep connections with his community. Everything ALS has identified three core missions for Pathfinders: physical empowerment, mental resilience, and spiritual support. Throughout Shawn's career, he has become very well versed in providing physical and mental support. But I wanted to know more about how the spiritual support piece plays out for these Pathfinders.

Flynn 33:56

These are all super important focuses and physical empowerment, mental resilience, those are ones that we hear about a lot doing this podcast and speaking to people within the community. The spiritual support piece, I think, is something that we've heard less about, which I think is interesting because that's so entwined into the mortality of it all. How does that play out for you?

Shawn 34:17

It's it's funny because um our spiritual advisor is McFinn Lovere with Everything ALS. And he's he's kind of our pack leader, and he is very spiritual. His background is he used to be a priest or a monk. I can't remember exactly what denom denomination he practiced under. But very, very spiritual. It's very empowering to some, very turn-offish to others, if that makes sense. Um but super nice guy, and he really tries to hone in on it. Doesn't matter what nationality or or religion you are, we all have spiritual beings. You know, we we all have some sort of aura about us, or you know, I don't believe in any particular religion, but I I feel I'm spiritual and that there is something bigger and better out there. We're all energy, right? You know, the how to connect to somebody on their wavelength, right? You know, so if they're uh East Indian, you know, they'll have a certain practice, or if they're from Israel, they'll have certain traditions. If they're from North America, they'll have certain traditions, right? So to respect that person and to connect with them on their level is kind of to me, that's a spiritual part of that, is that you're not alone, we're here to help you no matter who you are, no matter what you believe, we're here to be part of your journey. You know, whether you need like say physical help, you need you know help finding a proper commode, or if you need emotional help because you feel alone, or if you need spiritual help because you're wondering where the end of your journey is gonna take you. We're all here to to listen, to talk about it, and to be part of your journey. So um one of our pathfinders, Joe, came up with our our motto that we're here to lead the way, but to reach back and help others coming behind us. We we we blaze a path and we reach back to help others join us on that path.

Hayley 36:14

Nice. Okay, that kind of explains. So I was I was wondering about the term pathfinder. So you just explained it. Yeah, I don't know if I had mentioned this to you before, Shawn, when we talked before, but that gentleman McFinn, I I mean I've watched a few of the everything ALS or expert talks, and they're really good. Like I I I really like these, you know, and he does have there is something about him. So I'm not surprised that you say he he was a priest or minister or or something previously, right? Because there's something about his energy. And anyways, there was one where after the talk was done, he just sort of said to everybody, Okay, say goodnight to whoever you want to. And then all these people, I don't know if you were on that call or not, but all these people on the call. I was just watching the recording.

Shawn 36:59

We do it every meeting. That's one of our rituals, is that we all say goodbye to each other. They all sing to say goodnight to.

Hayley 37:05

And uh it was it was nice, it was just good energy. It was it, it really was very uplifting, and I I could see where maybe some folks would think that's a little too much for me, but I thought it was great. So, and clearly the people who were there were were getting a big kick out of it. So, yeah, nice.

Flynn 37:34

UBC's Project Hope was spearheaded by former ALS BC chairperson Wendy Toyer in an effort to bring ALS research back to BC after Dr. Andrew Eisen's retirement. She started fundraising for a new space in which to operate and to bring on board a new clinician and head of research. The first phase of Project Hope brought in over $5 million, establishing a new clinic space in Vancouver's Djavad Mowafaghian Center for Brain Health with a new lead researcher, Dr. Erik Pioro. As an ALS patient with Project Hope, Shawn has participated in a public service announcement as well as a global news story promoting Project Hope.

Shawn 38:17

We're now in that space, huge windows, beautiful location, very much a more positive area to, to go. So now that we have the space, of course, we have to continue to fundraise to keep funding the project, right? So uh every year during our uh April's ALS Awareness Month, and then after that we usually do our what we call Move to Cure, which is our walks. I think in Ontario they're called the Walk for ALS, but each province has its own name for it. Yeah. So I believe forty percent of the funds raised on our moves go towards Project Hope, and the other sixty percent goes towards our equipment loan program. You know, free wheelchairs, commodes, respirators, all those kinds of things that we may need are all provided free of charge to ALS patients.

Hayley 38:58

Yeah, very good. So that's through um ALS Society of BC.

Shawn 39:02

Uh BC, exactly, yeah.

Hayley 39:03

Yeah, okay.

Shawn 39:04

So so they they they fund the the LSBC portion of that project hope. There's all other fundraising going on through the CALS program. And you know, we're we're we're trying to fundraise for the you know Canadian collaboration to Cure ALS, which will help fund that. It'll be a supplementary to LSBC funding.

Hayley 39:24

Yeah, so that's kind of where some of that funding, if we can get it, hopefully we do, some of that funding in in the province of BC, that's where it's gonna go.

Shawn 39:34

So yeah, it'll go to the CALS network, which is all these provincial clinics, so we'll get a percentage of that as part of the CALS.

Hayley 39:41

Okay, makes sense. Yeah, got it.

Shawn 39:43

I don't know exactly how it's all you know integrated, but that's my understanding.

Hayley 39:47

Yeah, yeah. That makes that makes sense. Project Hope is currently in the process of establishing a biobank through their research clinic. So far, research has included an observational study comparing patients with ALS versus FTD, also known as frontotemporal dementia, an umbrella term for a group of neurodegenerative disorders caused by nerve cell loss, predominantly in the brain's frontal lobes.

Shawn 40:13

That's all part of the research clinic. So it's so far we've started with observational trials. So they they've done one on ALS and FTD. They they think it's a spectrum. You got pure ALS, you have pure FTD, or something in between. Okay. And uh so they did an observational study. I I took part of that observational trial as a control. As you know, I h I have only ALS, not FTD. So they took all kinds of readings and and tests. And they also did that for the FTD people, right? So uh the next one is their biobank. So that's they're collecting samples of blood and looking for biomarkers, you know, to see what can we find. They're gonna take samples to make IPC cells.

Flynn 40:59

Induced pluripotent stem cells, or IPSCs, make it possible to create essentially any cell type in the body using any other as a starting point. In ALS, IPSCs provide the opportunity to take skin or blood cells from someone living with the disease and turn them into motor neurons and other relevant cell types. Researchers can then study human cells with the exact genetic makeup of the person donating them.

Shawn 41:22

Myself, I have what they call a variant of unknown susceptibility where I do have a genetic marker, but it's not the one that is linked to ALS. I have one little spelling mistake, but they don't know what does it cause ALS or not. Is it just some harmless or not? Gotcha. So they're gonna take my blood and turn it into a motor neuron to test my variant to see what they can find out. So there's experiments they can do and then they're actually gonna move forward with interventional trials. We're actually gonna do drug trials this coming spring. I I haven't heard of an exact date yet, but they actually have three trials that they're you know, applying for all the different paperwork they have to apply for to get those trials going in BC. So we'll have three of them this year.

Hayley 42:12

Yeah, that's awesome.

Shawn 42:14

Yeah, so things are finally unfolding. Like I said, it's been three to five years of work and looking and fundraising, and it's finally coming to fruition that uh real research is actually happening at UBC.

Hayley 42:29

Yeah, that's awesome. That's really good news. You can support Project Hope year-round via donations on their website. Fundraising efforts are particularly strong in the ALS Awareness Month, June, where BC Cities organize their annual Move to Cure ALS events.

Shawn 42:47

I think we have at least a dozen in BC where each city does its own walk. I know Surrey, Victoria, Vancouver, Kelowna, Vernon, Prince George, wherever they uh they can organize, they'll uh they'll have a move. I understand I will be part of that program again this year. I haven't heard how or why, but uh there's meetings coming over at the end of the month that we'll find out more.

Flynn 43:09

Shawn may not know why he's being asked to have a hand in the Move to Cure program this year, but I do. Shawn is too humble to tell us that he actually ran the Vernon Move to Cure ALS last year, taking over the event for the first time since his diagnosis. The event featured a live band, silent auction prizes donated by local businesses, and over 50 walk attendees. The event raised over $6,200, nearly a third raised by Shawn's own team. It's no wonder they want him in a leadership role again this year.

Hayley 43:35

In June of 2025, Shawn was invited to participate in ALS Canada’s National Research Summit, an event attended by researchers, caregivers, and people with ALS. Shawn tells us the event

Hayley 44:00

was organized to prioritize identifying a shared vision for federal government advocacy in the face of ALS.

Shawn 44:08

They put it on a survey before the actual summit to ask various, I can't remember all of them, but they were they're asking researchers, clinicians, people with ALS they asked all these different questions about how do we think the system could be better? What needs to be done, what needs to be changed. And from that survey, they actually wrote out on big flipboard papers, you know, like whatever that is, two foot by three foot big papers. Yeah. And they plastered an entire ballroom with all these quotes from that survey. Okay. So when we all got there, like I say, it was about a hundred of us where there's uh a mix of people with ALS, people from the different provincial ALS, you know, ALSBC and Alberta and whatnot.

Hayley 44:52

Yeah.

Shawn 44:53

As well as researchers and clinicians. So we all had, you know, there's a breakfast get together, you know, first hour or whatever. So that gives you time to go around the room and read all these different responses. What are the ideas out there? What what can change, what should be changed? And then when we got down to it, the basic question to the group was if you were in an elevator with a the federal minister of health and you had a chance to pitch we need fifty million dollars to do what? What would that pitch be if you had you know a minute of someone's time to get that next meeting to discuss what we what we need, or what would you say? So the whole day was uh was organized by an outside committee that was very good at these kinds of meetings. So we we we sat at tables of six, I believe it was, and we uh we we went through exercises of what would you ask for, how would you make that pitch. And it was a whole day of those kinds of exercises to get as much information out of as many different people as we could. And at the end, we had I think eight different presentations of going on through all those exercises, make that pitch to to the uh the Minister of Health. It was really, really fun. It was it was quite the experiment. I don't know how ALS Canada narrowed down those hundreds of ideas into that one. But they did, and and it's absolutely true. Yeah, what have we already done that's successful? Like we already have the CALS program, we already have the CNDR. How do we make that better and how do we build on that rather than try and build a whole new system? Let's take the three things we have that we do really well and make it bigger across Canada so that anybody with ALS can contribute somehow, whether it's just from a survey to the CNDR because you live in the middle of nowhere, or because you're near a center and you can actually get to a clinic, you can actually become part of an actual research trial. Everyone has their opportunity to do something to help f move the needle and try to find a road to that cure, whether it's in Canada or out of Canada. Hopefully it's us, but you never know, you know, but we're open to that. Yeah, yeah. And that's that that's actually how I got invited. During one of our community ambassador meetings, yeah, I had asked Dave. I see that we're uh listed as a sponsor for I think it's called Access ALS in the US, where they're trying to collect all this big data in the US for all the patients with ALS and we're listed as a sponsor. But we as Canadians cannot participate. That is US only. Okay. Why are we supporting this? And the answer is, well, because we we you know we're looking for the answer anywhere. It's a worldwide effort. Why shouldn't we be helping where we can, even though we're not participating? And that's how I got invited. That I wanted to open up that data to say, well, if they're gonna do it there, why can't they do it here as well? Let's let's go global. Yeah. We wanted that kind of voice, that kind of thinking. And that's how I got my invite to the summit was that I just started asking people about why are we doing it this way? Is there a better way? And you know, yeah, so the conversation just grew from there. And they're just looking for people with other ideas, you know, that are not just going with the status quo, well, that's right. That's what we've always done, so that's why we're gonna keep doing it. No.

Hayley 48:38

Yeah, yeah. Like listen, if if we want yeah, and if we want things to change, you gotta change how to do it. Yeah, you gotta you gotta get other people involved to get some fresh ideas.

Shawn 48:48

We do the same old, same old, and we've gotten no, we need to change how we do this. Yes, we've gotta keep it scientific. We've gotta do it the right way, but there's gotta be a better way.

Hayley 48:59

Mm-hmm. Mm-hmm. Yeah, definitely.

Shawn 49:01

With all the new technology we have out there, let's find a more efficient, faster way to get to that end.

Hayley 49:08

Yeah, yeah. Yeah, because for this community, like in terms of the amount of funding or the amount of air time that we get, everybody working together is like super duper critical. It really should be critical for all health charities. Um, but I have this sense of like for the ALS community, it's like they've had no choice but to like work together because otherwise the cure is going to continue to elude researchers.

Flynn 49:47

On October 1st and 2nd, 2025, Shawn joined a group of 47 delegates from the ALS community at Parliament Hill in Ottawa. The group advocated for the Canadian collaboration to cure ALS, asking for $50 million over five years. Delegates had a training session to help them prepare for their meetings with MPs. Shawn was not able to attend the official training session as he was in Montreal, where he is part of an ongoing ALS clinical trial. So his training day was more of a last-minute crash course on ALS advocacy.

Shawn 50:15

I got a crash course from Tammy Moore, the head of ALS Canada, about what was talked about the day before, and this is what we're gonna do, this is how we're gonna do it. But my part of the conversation was, because what we did is we basically broke out into groups of four, where there was one patient with ALS, one from an ALS society for me was Tammy. Okay. We had a clinical researcher and a clinician. We had those four people, those four perspectives, and then we all got assigned to talk to a certain minister. So I got two of them, one from BC, from I believe Richmond, and one from uh Ontario. Okay. And we had certain appointments at a certain time, we had half an hour, okay, and we basically sat down at the beginning of the day and say, okay, what's our speech gonna be? Shawn, you're gonna talk about your journey with ALS, how you got to where you are. Tammy, you're gonna talk about ALS Canada and how we've got these programs already built. We just want to expand on them. Yeah, and the clinical reachers are gonna talk about their research and how they need more funding to do have the proper equipment, blah, blah, blah. Yeah. And so we got our speech together, basically, and we went and talked to our two ministers. And um, yeah, it was very enlightening. It's the first time I've done it.

unknown 51:37

Yeah.

Shawn 51:38

Apparently, it's the first time they've done it a couple years because of COVID, of course.

unknown 51:41

Right.

Shawn 51:42

And they got kind of sidetracked for uh for that kind of thing.

Hayley 51:45

Yeah.

Shawn 51:46

So I think we got quite the impression. We got lots of follow-up letters and endorsements after Hill Day. Okay. Uh like Elizabeth May from the Green Party was super supportive.

Hayley 51:58

Oh, good. Yeah.

Shawn 51:59

Wrote a letter of recommendation that we really need to do this. Uh we had several liberal caucus members who wanted more meetings where they actually want to meet in their riding with someone in their ridiing who had ALS. Okay. To really drive that point home that this is something we need.

Hayley 52:16

Yeah.

Shawn 52:16

And that we have people in their ridings, obviously. We're all over the place, right? So it's one of those things where we're really trying to drive that point home.

Hayley 52:26

Yeah.

Shawn 52:26

That this is gonna be something critical for Canada to start to lead the way in research and to ultimately find that cure or be part of finding that cure.

Hayley 52:36

Yeah, yeah, yeah. I I like too that you're taking this idea of like, you know, being innovative too in Canada. Like we have this opportunity to kind of be a leader in terms of research in this field, right? So like presenting it to government in that way too. But yeah, it sounds like really well organized, right? And I it's neat that, yes, you had like groups of four. So it wasn't just you meeting with an MP on your own, then you had like three other people from different areas of the ALS community, right? It's great, yeah.

Shawn 53:06

And uh, you know, we're trying to follow that up with more many like they they want me to meet with my local MP here in in North Okanagan. And even though it's a conservative in my riding, you know, they can support it, but uh hopefully they won't shoot it down if it does come to fruition that they can support that bill and um even though it's not them bringing it to the forefront. Right, yeah. If if my MP was a liberal instead of a conservative, but yeah, they're all gonna make a difference. So we we're trying to chat it up with as many people as we can.

Hayley 53:36

Yeah.

Shawn 53:37

Uh so that when that next budget cycle comes around, we're part of that conversation.

Hayley 53:41

Yeah.

Shawn 53:42

Fifty million for five years, like that's as a drop in the bucket. It should be five hundred million, but you know, we've got to start somewhere. And that's right, it's not big dollars when you consider the kinds of money being put into all these other projects.

Hayley 53:56

It it isn't. It it it really isn't. And in fact, you know, when I first read it, I thought it was fifty million dollars a year for five years. And then when I reread it, I was like, okay, 50 million over five years, and I was like, dang, is that enough money? But you're right, like, you know, logically, we we really could reasonably ask for more. But also, how can governments say no to this ultimately, right? Like, I trust that the people at ALS Canada, like they they know what they're doing, right? Like, they know the best way to like try to get things moving forward because we don't want to ask for a billion dollars and then they just go, yeah, come on, like, no, we're not doing that.

Shawn 54:39

It's gonna be steps. We've got to find a way to get that into the conversation. So, because really, if you look at healthcare in general, if if ALS and different motor neural diseases are becoming more and more frequent, which they're projecting is going to be, we need to spend the money now to find that cure and that treatment so that later on we're not spending billions in care. Like really it's a savings program, but it's it's a matter of finding a way to get them to understand that and to invest in it and believe in it. So it's almost like climate change, you know, the the the weather shifts go plus and minus to what you spend money on, and money is there, but what do you spend it on, right? So hopefully we can keep ourselves on top of that wave and keep it keep talking about it.

Bringing Ales for ALS to BC

Hayley 55:23

Yeah, 100%. But the more of us that talk about it, the the better. Eventually we'll get there. Shawn is working with fellow ALS Canada Community Ambassador Olivia D'Amici to partner with a local brewery in BC and bring the ALES for ALS program to Western Canada. ALES for ALS started back in 2013 in the US when the ALS Therapy Development Institute partnered with Hops producers Yakima Chief Hops and Loftus Ranches. These brands agreed to donate hops to participating breweries so they could brew a unique blend dedicated to ALS awareness. $1 per can or $2 per four pack of cans is donated to ALS TDI. This program came to Canada last year when PAL's Louis Del Rey used his connections to develop a Canadian arm of the program in Ontario. Shawn hopes to do the same in BC.

Shawn 56:31

It's very new. He just started last year. I think there's five or six Ontario breweries doing it for Canada. Something like 10 or 20% go to ALS Canada, and the rest goes to ALS TDI, which is a nonprofit research company. It specializes in the very early stages of research. What chemicals interact with, what they're not part of the phase one, two, three part of the trials. They're part of what drug will work to get to phase one kind of thing. Gotcha. Like the fundamental stuff. Very fundamental stuff, exactly. So if they find a target, now they'll say, okay, out of these hundred medications, which one's the most effective at hitting that target kind of thing.

Hayley 57:14

Right. Okay, gotcha. Oh, that's interesting.

Shawn 57:17

It's super important work, but uh again, it all takes money, and they're a nonprofit that doesn't, you know, they're not being funded by the government per se. So I love the idea that, you know, why not enjoy a beer and support a cause? But Louie really lucked out in a weird way where he found someone in the brewery industry that had ALS. The daughter of Ron Keefe is a manager of Grant Brewery, but Ron has ALS. So they have an instant connection that, well, yeah, I'd love to help out and donate, blah, blah, blah. So they they had a really good in to get certain breweries going. So now I'm trying to be the Western arm to see can we get something going out our west? We've got tons of microbreweries out there that I'm sure love to do it. But how do you get the foot in the door? That you know, they've got people knocking on their doors looking for money all the time, too.

Hayley 58:19

Yeah, yeah.

Shawn 58:21

Uh, so Ron has a connection with the BC Provincial Microbrewering Association. So I've approached them as a group can use spread the word because you know Ron is part of this. He knows these people. Yep. And they put some leverage on the breweries to say, yes, we want to help. Yeah, okay. Yeah, I put the word out to them and uh I put the word out to two microbreweries here in my North Okinagan area, which I haven't heard back yet from, so I'm still pushing that to see. You know, make a visit here and there and you know, leave some information every time to see if we can get some traction. And Olivia has one in her area in Port Coquitlam, which is outside of Vancouver, that uh she believes would be a good fit because they do do lots of uh charity work and they have all kinds of bands and functions and they're a very busy pub kind of thing. So we're approaching them to see if they would be interested in contributing. So yeah, so we're we're putting out the the the hooks, the the lures out there to see if somebody's gonna bite and help us with our project. But uh so far, no hard hits yet, but I I I'm I'm uh I'm pretty sure that now that I have more time to get out there and bang doors, I think yes.

Hayley 59:41

Yes, because somebody's gonna say yes to your smiling face, Shawn.

Shawn 59:44

Exactly, exactly. Rather than an email, which is kind of lackluster, I can try to make my case best I can, but yeah, you can actually see somebody and ask for that help for more for more uh yeah.

Hayley 1:00:02

I mean, like let's face it, it's it's pretty easy to ignore an email, but it's it's not quite so easy to ignore somebody standing right in front of you.

Flynn 1:00:26

As we heard Shawn allude to early in this episode, he’s got quite the passion for carpentry and home renovations. This is something he's enjoyed doing with his wife and in-laws for years. But his approach to the passion has changed out of necessity since his diagnosis.

Shawn 1:00:35

My wife and I have been very active trying to build a retirement. So we've uh worked with my in-laws. My father-in-law is a contractor by trade. So we as a team with the four of us, myself, my wife, and him and his wife, we would buy a house together, fix it up, and flip it. And we did that about uh four times as a family, and you know, each time make a bit more money, kind of thing. So we were able to buy our own house to keep and rent, and doing the renovations and upkeep uh on our own, I think, because uh we've got the skills. He's taught me what I need to know about uh you know, plumbing and tile setting and framing a wall and roofing and whatnot. And it's something I really love to do, like working with my hands and and uh saying I built that, that that kind of pride. And I've loved doing that forever. Uh it's me has always been the the designer, the color, the the textures, that kind of thing, right? When I got diagnosed, I guess I tried to do a few things, building a wheelchair ramp. We redid our deck with more ramps and put some different decking on, the uh the kind that's got the plastic over top of it, so it's kind of a forever deck. So anytime soon, hopefully. Yeah. And we've now had to transition as mine is upper limb, my my hands and my arms are getting weaker. Uh, as of about three months ago, I can no longer squeeze hard enough to squeeze a drill or a saw that trigger. Yeah. So I'm having to teach her how to do what I used to do. Because we love doing what we do, but we're also cheap. And I'd rather do it myself than pay someone hundreds of dollars to do something I know I get we can do ourselves.

Hayley 1:02:19

Yeah.

Shawn 1:02:20

Like I said, we have a rental house that we just actually we had somebody move out after eight years of living there, but after eight years of life, there's been a lot of damage. She's had a son growing up to the teenage years and was angry and punched a few holes in the wall, this and that. So there was about four months worth of renovations that we had to do to get this thing up and rentable again. So I'm teaching my wife how to lay flooring, how to put carpets on stairs, how to put you know, cut and install trim and crown molding, and all these kinds of things. So I've I've helped when I can, you know, holding the tape measure, instructing her how to do this or that, and um and she's been my hands kind of right. So I'm still involved, I'm supervising, doing what I can where I can, but having to teach myself patience that now it's someone else doing the work and I've got to let it do it on their time, yeah, but I'm gonna help out when I can, right? So yeah, it it's a bit of a dichotomy where you're you're used to doing at a certain pace, certain uh you know, order of steps, but now you're teaching somebody else who has their own ideas of what steps should be done. So yeah, it it's been a journey, but uh we're getting there. We ended up selling another different rental we had, and our newest project is we're gonna build a garage with a suite above it for my younger son because this uh rental we sold, he was living in the basement. So now he's living at home in our basement. So now we've got to find a new space for him. So supervised the building of a garage and a suite in our driveway this spring. So always something to do. Yeah, never a dull moment.

Hayley 1:04:05

Good. Yeah, yeah. For your wife, Sabina, then you know, you're you're kind of the one in charge and you're you're teaching her, telling her what to do. So how does she feel about that? We're still married. Oh, right on, right on. Yeah, do you guys do you have some some system worked out where it's like, okay, Shawn, you get to boss me around right now, but then later I'm gonna boss you around for some other thing?

Shawn 1:04:33

Something like that, yeah, yeah. We got a bit of an understanding. You know, there's there's definitely some emotions here and there where uh it's overwhelming, and yeah, we worked through it over the years, and uh we know how to work together, and we gotta give each other grace here and there. Yeah. Like you say, we're still married after all these years of renovating, and you know, well, I want that wall this way, and it's like, well, but I gotta build it that way, and you know, you've got to come to common ground. It's like any any marital fight, you've gotta find common ground, not just quit and walk away and and go find a different partner, right? You know, it's just right. Everyone's getting divorced because they find greener grass over here, right? But yeah, yeah. Yeah, no, we we've we found a way to compromise and respect each other's opinions, and it's heat it's heated at times. I I won't I won't uh skirt around that, but yeah, we're still here, we're still we're still going strong. I've always said that that this disease is hardest on caregivers than it is on the patient.

Hayley 1:05:31

Yeah.

Shawn 1:05:32

I see that my family, especially my wife, yeah. You know, to to see me uh going downhill, uh, you know, the retirement tried to plan with rentals, blah, blah, blah, and doing all these different things. It's still there. Like I'm blessed and I'm very slow. I'm kind of like Stephen Hawking that way, where I'm gonna be here for twenty thirty years, but how am I gonna be here? You know, that kind of thing. What's it gonna look like? That unknown of when isn't Next loss gonna happen in a in a bigger way, right?

Hayley 1:06:04

Yeah.

Shawn 1:06:04

Before I'm walking well, I'm breathing well, but I can't lift or squeeze. But how long's that gonna last, you know?

Hayley 1:06:12

Yeah, yeah.

Shawn 1:06:18

Gotta wait for this thing to happen, be as flexible as you can, and uh like I say, just do what you can while you can and try to keep positive and something down the road's gonna happen. You just gotta keep those eyes open and look for possibilities. That's right. Science is is working, just unfortunately slowly, but I'll be here to to see it, I'm sure. But uh is always a question mark.

Hayley 1:06:41

Yeah. Yeah, and I I think like with with you and your wife, I mean, obviously you both really enjoy this doing the renovations and carpentry, and so yeah, you're you must be having a ton of fun with it, and sometimes you're gonna have disagreements, but no biggie there. So yeah, it's good.

Shawn 1:06:58

But yeah, I have a let go of that being able to do it myself is hard, and for her to accept instruction for her is hard. It was all kinds of fun.

Shawn's final message

Hayley 1:07:08

Oh gosh. Oh, of course, yeah. As always, Shawn left us with a message to consider.

Shawn 1:07:24

My mantra is why I what I go by, you know, do what you can while you can. Enjoy life while you can. It's you know for anybody with or without a disease, life is short, you never know when it's your time, right? So you gotta you gotta enjoy every moment. And having a disease now really solidifies that that there is gonna be an endpoint. You know, you g you gotta either accept it and m and move forward and live life, or you're going to accept it and go into misery and it's gonna take you faster, kind of, right? So I choose a positivity way, and uh you know, the the brain's a powerful thing, and uh there are things out there called reversals of ALS. There's been a couple handful, like 60-ish, out of thousands, so it's not that many, but it has happened, and I'm aiming to be number sixty-five, but we'll see what happens. Right on, Shawn. Yeah, you just you just gotta keep moving forward, trying the best you can, and uh life will find a way.

Hayley 1:08:34

It was a very enjoyable conversation with Shawn. He is like really kind of a bright light.

Flynn 1:08:40

Yeah, he's very kind.

Hayley 1:08:41

He's a very kind demeanor, and he is a very positive person. Um, I enjoyed um hearing about Project Hope, learn a little bit more about everything ALS because I really like that organization in terms of the talks that they have. And you know, if you can't make it in person to the webinar, you can listen to them after the fact. So really good for learning more about the disease and where things are at. You know, when he was talking about the ALS Society of Canada National Research Summit in June and how they went about trying to like get this one message to put forward to the federal government, right? Like really innovative, definitely taking everybody into consideration. It was people with ALS caregivers, researchers, clinicians, people from the different societies, like so from provincial ALS societies, ALS Canada, ALS Action Canada. So they had this broad representation from all these different groups and organizations that make up the ALS community. Right.

Flynn 1:09:43

Yeah, the way he described it, it did sound like kind of a powerful thing to be a part of. Obviously, the the Hill Day as a whole and going there as a group and speaking to MPs, that would be powerful. But the way he described, you know, having all those uh messages from the surveys kind of pasted up on the wall, and I'm just sort of picturing all of these people walking in and seeing these messages that they probably really resonate with, even if they're not the ones who said it, right? It just yeah, it feels like a very powerful moment. So I I agree, I really enjoyed hearing about that as well. I also really liked that Shawn was able to clarify a little bit of the AI-related stuff in regards to the Everything ALS tracker app. It makes me feel a little bit better, right? You know, you and I have had a couple of discussions uh before today about you know my stances on AI. And as a media person, generative AI very much feels like a threat to me in many ways. You know, I have a lot of concerns about creativity, I have a lot of concerns about the environment, I have a lot of concerns about ethical and unethical uses of AI. And so pretty much anytime I hear that an app is using generative AI of any kind, I I've got like red flags going up, right? But it absolutely makes me feel better to know what their particular chatbots are going to be drawing on, and it's from these webinars. And I haven't personally seen any of these webinars, but I know that you said in particular, you really think that everything ALS provides, some really solid education. Makes me feel better.

Hayley 1:11:15

Yeah, yeah. Yeah, well, they're definitely like they're expert talks. I mean, these are again clinicians and researchers that are in the field. So yep, they definitely know what they're talking about. And it's nice to hear about his, you know, his passion for carpentry and building things. My dad, or your grandpa, your papa, he he had that same passion. And it is special when you can build something with your own two hands, right? To you know, you can hold a lot of pride in that. And and those pieces mean something, right? You know, much more than things that you've just gone out and bought, right? So yeah.

Flynn 1:11:49

Even though it sounds like there's the the occasional struggle having to adjust and and be sort of coaching his wife Sabina a little bit and doing these projects now. I think that comes with any project, right? There's always stress and whatnot, but I think it's very much a testament to a strong relationship, and I'm sure it's very fulfilling to work through that stuff. And even if he's not building something with his own two hands, I feel like having your life partner help you with something like that is perhaps the next best thing. Yeah, agreed. 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 Shawn Penno for joining us and sharing his story.

Hayley 1:12:30

For a full list of resources mentioned and references used in the creation of this episode, such as information on how to get involved with everything ALS and Project Hope, please check the episode description, where you'll find all the links you need.

Flynn 1:12:45

If you're enjoying originals more than ALS, please consider liking, commenting, sharing, rating, and following us on the podcast platform of your choosing. Not only do your comments help us improve the show, but these actions really help us to branch out of our immediate circles and recruit a broader audience to join us in the journey for a world without ALS.

Hayley 1:13:03

And if you'd like to share your story on the show or suggest what you'd like to hear us talk about next, feel free to send us an email at originals.morethanals@ gmail.com.

Flynn 1:13:15

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.