Jodee Karlowsky - Speak Your Truth

"...even if my voice waivers, I'm still going to speak out  and  I'm speaking out because Greg can't speak."

There are many words one could use to describe Jodee Karlowsky - creative mind, passionate leader, persistent advocate, dedicated caregiver, CALI grad, animal lover, instant grandma - the list goes on. But if you ask Jodee what brings the most joy to her colourful life, she'll tell you it's her husband, Greg. 

After 15 years of marriage and 9 months of medical confusion, Greg was diagnosed with ALS in August, 2024. He and Jodee were left staring down a question that plagues anyone who's had a life-changing diagnosis: now what? Together, Jodee and Greg are finding out the answers one day at a time, learning to balance their bucket list with efforts to advocate for access to ALS resources across Manitoba.

Join us as we sit down with Jodee to talk about her journey of finding support in a landscape with little guidance, and the steps she's taking to make the process easier for others in the future.

For more information on the CALI program, visit https://als.ca/advocacy/canadian-als-learning-institute/.

For information regarding ALS Manitoba's support group, visit https://alsmb.ca/als-manitoba/services/.

For more information on the ElevenLabs Impact Program, providing free voice cloning licenses to individuals with ALS, visit https://elevenlabs.io/impact-program.

For more information on the ALS Canada Caregiver Mental Health Program, visit https://als.ca/get-support/community-support/supporting-the-mental-health-of-als-caregivers/.

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

These resources double as the references for today's episode!

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

Transcript

Flynn 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.

Hayley 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.

Jess 0:27

She possesses a great deal of empathy. She can meet someone new and make things feel comfortable, easy to talk to her and feel heard. Is always fun to be around.

Flynn 0:36

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. Today we are joined by Jodee Karlowski.

Hayley 0:48

Jodee Karlowski is a woman of many talents. She has a Bachelor of Science in Agriculture Plant Sciences from the University of Manitoba. She worked for the Alliance Seed Corporation for more than 16 years, initially in the role of marketing coordinator, and in February 2022, she became the company's general manager. Jodee loves baseball, reading, and all animals, especially her yellow lab, Finley, but the joy of Jodee's life is her husband, Greg. Jodee wasn't with Greg when he was officially diagnosed with ALS in August of 2024, but Greg's diagnosis wasn't a complete shock. By then the road had already been long. Jodee was filled with a numbness, a quiet, hollow feeling, and in her mind was the question, okay, now what? Together, Jodee and Greg are figuring out the answers one day at a time. They are finding ways to complete their bucket list, help the ALS community, and focus on spending time with loved ones. Jodee is a 2026 graduate of the Canadian ALS Learning Institute, and we're very excited to have her as our guest today.

Jodee 1:56

Ooh, thank you. That was so awesome.

Hayley 1:59

Okay, good, good.

Flynn 2:00

For more on Jodee, here's some love from her good friend Jess.

Jess 2:04

Hi there, my name is Jessica, and I've been asked to say a few words about my friend Jodee. Jodee and I have been close friends for over 40 years, ever since our first year of university. She is that extrovert friend that's always fun to be around. She can meet someone new and make things feel comfortable very quickly. Although we lived in different provinces for years, every visit felt like simply picking up where we had left off. As a friend, I found that she possesses a great deal of empathy, which always makes it easy to talk to her and feel heard. After processing Greg's diagnosis of ALS, it seemed like such a natural progression for Jodee to want to help others navigate that journey as well. I'm so proud of Jodee for launching herself into this new role to help advocate for others with ALS.

Flynn 2:49

We'd like to extend a big thank you to Jess for taking the time to share and help us learn a little bit more about Jodee.

Hayley 2:55

And your dog's name is Finley, correct? That's right. Finley Kabowey. Finley Kabowey?

Jodee 3:02

Yeah. That's what everybody calls us, the Kaboweys, because um, one time at work we were discussing about how when you get married, women change their names, but men don't. So we decided, this group of my girlfriends and I, that I didn't want to do that. And for a long time, I mean, I guess I've always kept my maiden name Karlowski because I always tell people it took me a long time to learn how to spell it. So I don't want to change my name to Bowey. Or we decided that we should have a merger. That's what a marriage is, right? A merger. When you merge or something, you put things together. So then we were kind of joking when we were going for coffee one day, and we came up with Kabowey. License plate on our car is Kabowey, our emails Kabowee, and all of our friends call us the Kaboweys.

Hayley 3:52

Jodee and Greg met one another working in the agriculture industry. Though they were located in different provinces, they worked for the same grain company and their paths crossed when Greg would come into Winnipeg for meetings. Over the years, they developed a strong friendship that blossomed into something more, eventually marrying at the beginning of 2009.

Jodee 4:12

I got to be an instant grandma because uh his daughter has three young babies, and so I'm an instant grandma. Um, it's great because you just get the grandma stage without having the kids stage. So I like that.

Flynn 4:26

Greg has ball bar onset ALS, leading to early symptoms presenting through his speech. Jodee told us she feels oddly grateful for this as she's heard many stories of pALS with limb onset ALS being misdiagnosed due to non-specific symptoms. She recalls a memorable moment where it became clear Greg's voice was changing.

Jodee 4:45

In December of 2023, we were at his Christmas party, and um he sounded like he had sort of a cold voice was quite funny. And he was the MC at the Christmas party. We worked for a big grain company, and so we had a fairly big party, and he came to me and he said, Um, kind of sound like a bit of a douchebag. That's what sticks out in my head. And I said to him, I think you just need to stand closer to the mic.

Hayley 5:11

They chalked it up to some dental work Greg had recently undergone, but concerns continued to grow in early 2024 as Greg's voice was not improving and he was starting to struggle with chewing. He went to his general practitioner who eventually ruled out a suspected stroke. As the confusion continued, Greg began to have difficulty at work.

Jodee 5:33

He was slurring a little bit. People were thinking he was drunk at work. That was getting very gradually worse from January into June. You know, I can't say enough good things about his boss. If it wasn't for him, things probably wouldn't have happened as quick as they did. He kept saying to Greg, something's not right. You need to go and get it figured out. He kept encouraging Greg to go to the US and go and see somebody down there because uh things just go slow here.

Flynn 6:03

Greg's general practitioner set him up with an ear, nose, and throat specialist, but there was a nine-month wait to see the doctor. He was able to see a neurologist at the end of June 2024, but had continued to decline during the five-month wait. With the support of Greg's boss, they were able to secure a much more immediate appointment with an ENT specialist in Fargo, North Dakota, a four-hour drive south.

Jodee 6:26

Not uncommon for people from Winnipeg to drive to Fargo, but usually it's to go shopping, not to the doctor.

Hayley 6:32

Jodee had started to suspect throat cancer, but she was shocked by the ENT's alternative theory.

Jodee 6:38

He said, Well, you don't have throat cancer, your voice box is good, everything is good, but what I see happening is tongue fasciculations. That's a sign of ALS. And I remember distinctly saying to him, You're not serious, are you? And he said, Yeah, I am. Um, he said, I'm not a neurologist, but in med school, that's what they teach you. Fasciculations are a sign of ALS.

Flynn 7:04

After this visit to Fargo, the diagnosis process moved along quickly. In July, Greg saw the first of three neurologists, and by August 7th, 2024, he was diagnosed via EMG testing.

Jodee 7:17

It was kind of funny because this weekend we drove across Western Canada. So I said to Greg when we're driving, do you want to listen to the podcast episodes? And he did. And when Greg was listening to that, he was just nodding. He's like, Oh my god, same thing, same thing. It was about hearing he wasn't the only person that goes through those things. So there's like, no, you're not.

Hayley 7:40

That's really good because that is actually part of the purpose of the podcast. In fact, the primary one really is really we just wanted folks to feel like, yeah, I'm not the only one this is happening to. I I'm not alone. So and it's interesting, you know, my mom was diagnosed with bulbar ALS as well. Like it was bulbar onset, she had limb involvement too. But just in terms of her voice, it sounded nasally. You know, and when she went to the doctor, it was in the spring. And the doctor just thought it was her allergies, which, you know, of course, she'd had allergies her entire life. You know, but it was reasonable to kind of assume that, but that's not what it was. It wasn't her allergies. It did delay the diagnosis for several more months. And I guess from what you're saying there, really, by going to the clinic in Fargo, that sped up the diagnosis by a few months, right? Because otherwise it you wouldn't have been seeing the next specialist until the fall of 2024 in Canada.

Jodee 8:38

That's right. In that respect, we were really lucky because Greg's boss was so insistent on him going and getting this figured out.

Flynn 8:46

And it is great too that he was able to get that support from his boss, because that kind of support from an employer could definitely be um few and far between, especially if you know, you sound like you're drunk. And I I imagined that that would not be something that was in Greg's character. But, you know, you never know, especially at big corporations, how people are going to respond to that kind of thing. And we were even um mom, you were remarking the other day about Eric Dane, that actor who passed away uh from ALS in February, and he's in that show Euphoria. Third season of that has has just started coming out, and he he did record for that before he passed away. And you were really disappointed, mom, about how they're portraying him because the way that they've dealt with his ALS is that they've just made him, you know, a horrible drunk in the show. Um and you were quite bothered by that, eh?

Hayley 9:38

Yeah, disappointed is being really polite, Flynn.

Jodee 9:44

Oh, see, I haven't I haven't watched that. We watched the Eric Dane Famous Last Words. It was good because once again, that really resonated with Greg because he said a lot of the things that Eric said he felt. I watched him in Brilliant Minds, but I haven't watched him in Euphoria. Even his Brilliant Minds one, I was kind of like, everybody has a different way of dealing with things, but I thought I I would hope that people would not want to keep this from their family because man, it's um my word is shitty because that's the thing you can say that's socially acceptable. It's a shitty disease.

Hayley 10:21

Yeah. Yeah. Sometimes what we're thinking, the words we're thinking might not be socially acceptable, but as far as that Euphoria show goes, I watched it only because Eric Dane was in it. I guess what I was hoping was that for season three that they would somehow write his ALS into the story, and that is not what they did. They are portraying him as being drunk.

Jodee 10:45

That doesn't do the community any favors.

Flynn 10:47

It doesn't. There was an opportunity to do something much better with it.

Jodee 10:53

Yeah, that's too bad.

Hayley 11:03

When Greg was diagnosed, he and Jodee felt they were left in the dark by the medical community. One of Greg's neurologists mentioned the existence of Manitoba's ALS clinic, but otherwise, they were left to navigate this complex diagnosis with little guidance. The onus was on them to reach out for help.

Jodee 11:21

He reached out to the clinic to say, hey, when do I get to come to clinic? He did not. Nobody said to him, Well, you know, here's your diagnosis. Here's your next appointment. We're navigating stuff on our own. That's how I feel. And I think as more time passes, I still think that. People are left on their own here through no fault of anyone else. It's just that there's not enough resources here in Manitoba, right? I was just actually talking to Cali Orsulak, and uh she asked me, Have you ever had a home visit from the ALS Society of Manitoba? And I said, No, we go there all the time. I know in Ontario you guys have dedicated client coordinators that help figure out this is where I go for that, this is where I go for that. And here we don't have that. We reached out to the ALS Society of Manitoba, followed up with them. I mean, they're way understaffed. There's only two of them there, so that's an issue. You know, I started following the ALS Society of Canada, and I think that's how I found out about the CALI program. I wouldn't have known about it otherwise, applied for it, got in, and I was like shocked at how little I knew about what was out there. Even like the things like I asked the neurologists that we see, are we registered in the Canadian Motor Neuron Disease Registry? And he said, No. I'm like, okay, so we can do that though, right? We can self-register, and he said, Yeah. And I'm like, okay, we'll do that. So no one in Manitoba is in that. How do you even know how many people in Manitoba have ALS? Right. Then how do you assign resources to that, even?

Hayley 13:08

Yeah, exactly. How would you? They they wouldn't because they don't realize.

Jodee 13:12

I don't think I quite answered your question.

Hayley 13:14

Actually, Jodee, you did, you did answer it because really the answer is you weren't supported particularly well from the beginning. And there still is a lack of support and resources. Not it's not really anybody's fault at ALS Manitoba if they only have two staff members. I mean, my goodness, that's yeah, that's not a lot. But it's interesting. Like I j I just I guess I wonder about sharing of resources, like you know, what's available from ALS Canada that provincial societies could also use, right? I I don't know. It's interesting, Jodee. It's it's not it's not great. In terms of like the community services, that is where you would feel more supported if there were more. Like, yes, in Ontario, there are the Community Leads that go to people's homes to see how they're doing. And I am on the Community Services Advisory Council for ALS Canada. So they have a meeting four times a year. They're really good meetings. Like I learn a lot about how you know, if you need something like you need an occupational therapist to come into your home, they can organize to have that happen because the OTs that are at the ALS clinic do not come out to your home. They don't come out into the community, they're only in the clinic. So that sort of thing as an example of what things that they do to help, right?

Jodee 14:34

We've had that. They referred us to like the OT from our regional health area has come here to our house. For me, what I feel is that my dad's 94, he's still alive, he's gone through cancer three times. I always equate this to getting a cancer diagnosis. If you get a cancer diagnosis, there's kind of people there that say, okay, well, you go to the clinic over here, you do this, you're gonna do this, you're gonna do this, you're gonna do this, radiation, chemo, whatever it is. Uh, we're gonna do this, we're gonna try this. And if you need some help, I mean, I have an app on my phone for my dad that says, if you need a support group, there's a meeting Thursday night at the Grace Hospital in the back room, whatever. We didn't find that. I'm like, okay, Greg, I I need to talk to somebody about this. We have great friends, we've got great support from our family and everything, but I need to talk to someone that's doing this with me. Yeah, you know, that's going through the same thing. They're not going through it. They support us, they say, what can we do? But it's not the same. I felt like things were lacking. And I I still feel that things are lacking.

Flynn 15:54

As a part of her advocacy, Jodee has reached out to her local MP and MLA to discuss the deficits faced by the ALS community in Manitoba. Her MLA happens to be the province's health critic who followed up with Manitoba's health minister. While Jodee is grateful to have been connected to the health minister, she doesn't feel the response she received aligns with her lived experience trying to access ALS resources.

Jodee 16:16

And I just got an email back from her from the minister talking about how great they're doing with ALS care. And I was like, really? I don't know.

Flynn 16:27

One thing I notice about what you're saying is, you know, part of it is, yes, a marked lack of resources. But the resources that do exist, there's not a whole lot of guidance towards them. And, you know, there is some responsibility on a person to take initiative, but you know, your anecdote about a cancer diagnosis is a really good example, right? Because we think to ourselves, somebody's just received this cancer diagnosis. That's life-changing. We can't put the onus on them to find these resources. Here's all the resources. And it should be the same way for ALS, but you're not receiving that care, and that's not fair.

Jodee 17:04

That's you're exactly right, Flynn. That's exactly how I feel. I think because I'm the kind of person I am, I do look for resources, but there are lots of people that don't. And to give you an example of that, we have a small support group going here in Manitoba. We met a lady just at our last group. She said Greg was the first person she's met with ALS Bulbar. So she asked us lots of questions about how do I get this voice banking? How do I get this text-to-talk app? She just asked us about different things, and we just said, this is what we can help you with. This is how you do that, and make sure you ask about this. And just those little things that unless you go out and seek that information, you don't even think about it.

Hayley 17:49

Jodee acknowledges there is some access to this kind of information through the ALS Society of Manitoba, but she feels the organization needs more staff to provide the level of support that people with ALS and their caregivers need. ALS Manitoba's executive director, Diana Rasmussen, also functions as their client coordinator, roles that Jodee feels ought to be separate.

Jodee 18:15

She's doing too much. How can she be the client coordinator and the executive director? It's too much.

Hayley 18:21

Yeah. Sounds like it. I think the truth is too like part of your story there in terms of when Greg was diagnosed. Let's say the neurologist who did the EMG, that individual is giving Greg the diagnosis. I do understand that people are busy, but that is not an excuse for not taking literally, you know, maybe 30 seconds to provide additional information. How about just a kind word, acknowledging people? Again, I I understand, I understand they're busy, I understand they're stressed, I understand their job is difficult, but also part of their job is to support people. So it does it does really bother me that Greg walked out of there just cut loose. That's brutal.

Jodee 19:08

Yeah, basically. In fact, I think Greg said to the guy, Well, I'm gonna be the first person to beat this. You know, it it's a good attitude to have, but that's not quite reality. I think the doctor kind of just said, uh yeah. He wasn't very uh encouraging and saying, Yeah, you know what, that's a great attitude to have, or whatever. Um, I don't know why Greg asked about a power chair already, why he put that in. But he says, Oh, you could never afford a power chair. Good.

Hayley 19:38

And how did he know that? That's just very poor bedside manner. Greg could have been treated much better than he was. It already sucked the big one. But somebody could have done something to make it just a little bit easier.

Jodee 19:59

Yeah, that's what I think my point is, is is um you get this diagnosis and you literally go, what now?

Flynn 20:07

Jodee suggests that in Manitoba there could be room to share resources attributed to other neurological diseases in order to help the ALS community. She feels there may be more resources available to people with a disease like Parkinson's or MS, and wonders if these could be extended to ALS patients while the means for more dedicated ALS care is assembled.

Jodee 20:27

Is there ways to share somebody that helps those types of people too? Because these are neurological diseases. If the money isn't here in this province for a dedicated nurse practitioner, one of the comments that I got on the response that I got back today from the Manitoba Health Minister was we have this new motor neuron clinic that has dedicated neurologists, dedicated uh nurse practitioners, dedicated OTs, dedicated speech therapist, dedicated social worker, dedicated um respirologists and respiratory therapists. We don't actually have a nurse practitioner anymore. She quit. She hasn't been replaced, and I don't know if they will. We have two neurologists. The clinic only runs Mondays and Tuesdays, so 140 people in Manitoba with ALS. And the social worker is brand new. She's young and she's been in the job since January. Nothing against them, right? But in a system that's got issues for us and here in this province, I feel like if we had that, it would be easier.

Flynn 21:40

Oh, well, I mean, you've got to start somewhere, right? And I'm not some expert on diseases, right? But just in what I'm hearing and learning, is it often feels like ALS is just sort of forgotten. Like one of my best friends is uh about to finish school to be a registered massage therapist. I met with her the other day and uh I can't remember what the name of the specialty was that she's deciding on but she's picked this specialty that is supposed to be very helpful for people with Parkinson's and MS. I should have followed up and said, well what about ALS? That's in the same category. And I think I didn't ask because she's still a student. I figured, you know, if she knew anything about whether or not it would be helpful for ALS, I'm sure she would have said it because she knows our our history and that we do this podcast and whatnot. But you know I should text her about it because it did sort of bother me. I I always hear Parkinson's and MS I never hear ALS in the follow-up.

Jodee 22:40

Yeah.

Flynn 22:40

And that's important. It's a wonderful ultimate goal to have distinct care just for ALS, but you have to start somewhere. We should be able to share the wealth a little bit.

Jodee 22:51

Yeah , definitely.

Hayley 22:51

Since participating in the CALI program, Jodee has connected with a variety of local politicians about her experiences. And she doesn't necessarily accept all of their responses at face value. She's determined to challenge the health minister's overly positive response to her concerns, acknowledging the progress being made while pointing out the next steps that need to be taken.

Jodee 23:24

So yeah I'd love to still sit down and talk with the minister and say that's great. But there's still room for improvement. Means that um when I sat down with my MLA, she listened to what I had to say so I'm thrilled about that. And I've met with my MP here. He's actually a doctor and he was very aware of ALS because he was a minister when Mauril Belanger that is responsible for changing the words about Canada from an all of our sons command to well in all of our commands and was diagnosed with ALS in 2015 and passed in 2016. So he knew of ALS you know um I asked about the the $50 million ask.

Flynn 24:09

What Jodee's referring to here is the Canadian Collaboration to Cure ALS an advocacy campaign that involves asking the federal government for $50 million over five years towards Canadian ALS research.

Jodee 24:24

He supports it. I haven't done any follow-up but I invited them to both come to the walk in June the ALS walk so some of the things I've done.

Hayley 24:30

It's awesome that you did that Jodee I've I probably had the same feeling in terms of you do something and it does feel good to do it. It feels like okay maybe I got somewhere because they agreed to talk to me. It's hard not to afterwards think to yourself has is anything really gonna change as a result of that meeting but I can only assume that yes but it just it is one of those things where it's a marathon not a sprint. So you know I I forget how many times you have to tell somebody something before they really remember it but I think it's at least five times. So uh hopefully these these folks remember us.

Jodee 25:06

I thought it was actually 16 times.

Hayley 25:09

well you could be right you could be right I I wouldn't be surprised. ALS advocacy is still a new endeavor for Jodee and she did have some apprehensions about getting started with it.

Jodee 25:21

For me I think the fear was do I know what I'm really talking about? And I don't know everything. Am I talking about something that I have no right to talk about but in my head I think I overcame that because I'm like yeah I have every right to talk about this because it's impacting me. So maybe I don't have every single fact right but try and find the facts as much as I can if I don't have the right number I say I I don't know that I that's not in my realm of knowledge. But I'm living this so if I'm going through it somebody else is going to go through it too. And I I really wouldn't want anybody else to go through this.

Flynn 26:05

So of course absolutely we had an episode with Paula Trefiak that's coming out in a couple days now the the big sort of message that she wanted us to to amplify is that lived experience is expertise. You you've got the right idea you absolutely have every right to to stand up and say what's impacting you right because whether you have all the facts about every little thing about this very complicated disease of course you don't nobody does but you have all the facts about your own experience and that's important.

Jodee 26:35

And that's probably the one thing too about ALS is like everybody's disease is a little different and so their experience is a little different right you know um some people in the group that we have in Winnipeg have different concerns in what we do and other people are like oh my God that's a big deal and we're like whatever and everybody's different but this is a disease right never tick the box tick that box tick that box

Hayley 27:02

yeah very well said both of you yes you had some apprehensions but you did it because I I do think the more of us that do it they cannot ignore all of us. They can't I know it's a rare disease but there's enough of us that they can't ignore all of us. So I think it's great what you've done.

Jodee 27:20

Even if ALS is a rare disease there's lots of things that impact people with ALS that impact everybody else accessibility. That's just not an ALS problem right that's gonna be a lot of our problems. So I don't like to think of things in silos. That's the way I try and look at this.

Flynn 27:38

Jodee got into advocacy after her time in the CALI program. She felt stuck about how to proceed in the ALS community and found out about the CALI through ALS Canada social media sites. We asked what Jodee would say to someone considering the CALI and her answer was simple but powerful.

Jodee 27:55

Yeah do it

Hayley 27:58

Hayley its simple do it

Jodee 28:01

yeah um you know what like I don't really have anything bad to say my only complaint was it was a lot packed into the time that's maybe the one thing is the intensity was high. I realize why they do it that way right because you don't want to take up 30 days of people's time but it's almost like 30 days of people's times packed into six days if six days it's not even six days right a huge amount of information a huge amount of knowledge people that have been in the program that present their stories they were fabulous. They were inspirational yeah and it just made me want to do i i can't can't say enough good things about it

Hayley 28:57

today Greg is no longer able to speak physically Jodee recalls the first time she had to step in to speak for him.

Jodee 29:04

We were in Saskatoon in December and we were buying a barbecue from Home Depot and he asked the lady a question and I don't remember what the question was and she didn't understand him and I was like okay I have to speak for him.

Flynn 29:21

Greg now uses a text to talk app to communicate. Initially the provided voice was auto-generated but this past November Jodee and Greg learned about Eleven Labs an American company providing free voice cloning and banking to ALS patients.

Jodee 29:36

We searched through all the video we have in the house and CDs and things like that and pictures and videos and we were fortunate to find from our wedding actually about 45 seconds of his speaking saying his wedding vows and um it was actually my sister-in-law that had tape and so she held her phone to the videotape and was playing it quite hard to hear Greg's voice but you can hear it you can hear that it's him actually this past week when we were in Saskatoon with his kids the first time he used it his daughter said it's you dad

Hayley 30:12

it's nice to hear that you feel like his voice it really does sound like him

Jodee 30:17

It does

Flynn 30:17

Now I I would imagine even when you're using text to speech communication that still drastically impacts your ability to communicate you know when you have known someone for so many years and you become attuned to them and their modes of communication how does your relationship change when your ability to communicate changes so drastically

Jodee 30:43

oh my God it's funny because um Greg tells people now that I'm bad at charades because sometimes yeah you know even though you can text to talk it's it's not as simple as just you and I talking right now first you have to put your head down and actually he's losing his left hand so now he holds the phone in his left hand and does it with his right it's not just as instantaneous as what do you want for supper? So charades become a huge part he's like says looks at me and goes I'm like do you want me to steal third or I don't know what you want. So yeah it and it it can be very frustrating it can lead to arguments and other times it's really funny because like yeah he says I'm bad at charades and I said I'm not bad at charades you're the one that's doing the charading and I can't guess it so it's you that's bad at charades. So it's um it's really challenging and it that's probably like you know one of the things that's a really hard part of this is we've had a very good marriage. I've always called him the joy of my life before even his diagnosis he's always been the joy of my life because we talked about stuff and we did things together and so now having those discussions and even just like talking about well how did you think that this happened or can you believe that that person did that you know just those stupid little things that you talk about in a marriage they're not there. They're there but they're not the same instead of saying can you believe she did that his answer is an eye roll or something like that or you know he's like that's one of the things I find hardest is who to talk to who because I'm used to talking to him. I still can talk to him but it's harder for him to talk back to me right I do a lot of talking now because talking for both of us

Hayley 32:45

when Jodee started going to the ALS Society of Manitoba she repeatedly mentioned her need for a dedicated ALS support group in the province. She was very clear with us that she does not want to take credit for the creation of the support group that has since become available but she certainly made it known to the community that it was important to her.

Jodee 33:06

I just kept asking can we do this? Can we have that? And so now we have it going monthly so I don't want to take credit for it but my old boss always said that I'm a good person to keep moving things forward and if I want something I probably keep asking for it.

Flynn 33:22

Jodee mentions that even with the advent of social media ALS is still very isolating. Word doesn't always get around fast about the resources that are available. She was reminded of this when she made a post with her support group sporting some t-shirts made by fellow ALS community member Mark Combot.

Jodee 33:40

One says F ALS and mine has ALS in um sign language and somebody asked uh I've never heard of this support group in Winnipeg and then somebody else said well it's going and you should come and join so people didn't know about it. It's just like getting the word out and getting this community together so those are things that I like to do and I want to do

Hayley 34:06

very good so do you feel like you don't want to take credit for it but you definitely played a part in it happening. That's what it sounds like to me.

Jodee 34:13

Yeah help other people with what I've experienced.

Flynn 34:17

We did want to highlight as well I I don't know if you've heard about this it's a fairly new announcement ALS Canada now has ALS Canada Caregiver Mental Health Program funded by Petro Canada Caremakers Foundation which provides caregivers across Canada with licensed provincial therapists for up to four virtual sessions and that just came out at the beginning of April which you know four sessions is four sessions right but it's something I just wanted to mention that put it out there for any listeners who who might be interested in that

Hayley 34:56

Jodee and Greg are working together to balance their bucket list with the desire to advocate for the ALS community luckily the more Jodee gets into advocacy the more advocacy efforts become a part of that bucket list.

Jodee 35:10

And I think that's sort of like evolution as you get more involved there's things you see happening that's like oh I wish I could be involved in that what would be super cool is to go to some of the other walks and other places and things like that. You know what I think that would be a fun thing to do. It is evolving but it is difficult because like we want to do as many things as we can on our list. I've been asking about the Blue Jays and Lou Gherig's disease day it's funny because I feel disappointed you know as you look at your Facebook page and all these things come up about so many other teams that are having like special days you can sign up through the ALS Association of California if you were in California and say I want to go to a Angels game or a Dodgers game or something like that on Lou Gherig's Day and I would love to have that in Toronto that we could all go and say yeah bucket list and and then a huge advocacy thing. Yeah and that would be fun.

Flynn 36:07

Do you have any words of wisdom you know for other people that would be in your position that are sort of struggling with this dilemma between bucket list and advocacy because they're both things that take up a lot of time. You know what would you say to somebody who who is having similar feelings about it.

Jodee 36:25

Man that's a hard question to answer because my own experience is my experience somebody else's experience is their experience. So I guess I feel like I don't want to live life with regrets. So I try and do as much of both as we can and we're fortunate that we can do that. I retired and like I say Greg's he's walking slowly pretty good other than you know he doesn't speak he shouldn't eat he does a little bit. So we're fortunate in that we can do some of our bucket list things I think that there might come a time when we can't so you just have to say what's important to me at this time and for us it's been doing the things that we like to do and what we want to do. If I had to work I wouldn't be doing this so I'm I'm very lucky to do this. You gotta pick your battles.

Flynn 37:14

On the heels of that great advice we asked Jodee if there was any other advice she would give herself if she could go back in time to Greg's diagnosis.

Jodee 37:24

I would probably say to quit your job right away don't wait get more involved and continue on with the traveling as you have and doing your bucket list. So that's exactly what I would have said to myself I would have said quit. I liked working it was really hard to quit just added the layer of stress that I did not need. I think every caregiver will say that that need to look after them. I'm not just Greg's caregiver I have my dad and so I have a younger brother but I'm sort of the one that everything falls on right so as a daughter and a wife and a woman that's what we do I think that I shouldn't stereotype like that but for me that's how I approach it and um it was a lot so taking that stress out would be my first thing take as much stress out as you're as you can

Hayley 38:23

that's good advice Jodee. We spent time chatting with Jodee about her interests outside of the ALS community she's a big baseball fan loves the Toronto Blue Jays is someone who enjoys flexing her creative muscle and always has a project on the go. Jodee you gotta tell me your favorite moment from last year's season or the World Series what was your favorite moment?

Jodee 38:58

Addison Barger's Ace Clarion home run

Hayley 39:01

okay which game was that

Jodee 39:03

game five I think they were in Seattle yeah I can't remember

Hayley 39:07

I kind of remember there were so many good moments

Jodee 39:12

yeah the iconic George Springer running to the first base and jumping and everything that was that's a good one too but

Hayley 39:20

I personally like Ernie Clement when he I don't remember if he was already on base. I don't really know but somebody hit the ball I don't think it was a home run so he must have already been on base and he came around third base and he slid into home plate and he was like doing this he like literally looked and he had this big smile on his face I thought that was the most amazing I I just loved that he did that like but there's so many of them they'd get up to bat and you just had this feeling they're gonna hit it they're they're gonna get on base yeah and even though we didn't win the the World Series I really didn't feel sad or disappointed about that. I just thought they played so it was so great to watch them

Jodee 40:01

it was fun.

Hayley 40:02

I thoroughly enjoyed myself

Flynn 40:07

how do you feel about this season do you have high hopes

Jodee 40:15

I I want to but what I um I don't I just you know I guess I keep saying it's still early but it's not getting early anymore man if they could get some of the injured guys off the list and and pitching what what's with the pitching I don't want to bitch too much but i

Hayley 40:40

It is still early in the season but they're having a slow start

Jodee 40:44

they are but I guess the good thing is like so are a lot of other teams right so that are supposed to be ringers but they're not doing so hot either. So maybe they're gonna have a slow start and then uh come July it's gonna ramp up so that would be okay.

Hayley 41:02

You know the other question I had was about your t-shirt creations you like to create t-shirts I do so is that something you're thinking of doing

Jodee 41:09

yeah I I've got a list about a million pages long of things to do. What did I say about making priorities and so um but yeah no I don't know if this resonates with people I made a t-shirt that has the corn flour in it and then it says even if your voice wavers speak your truth to me that's like you asked me earlier about was I worried about advocacy. So even if my voice wavers I'm still gonna speak out and I'm speaking out because Greg can't speak so it resonates twice with me. So I made a t-shirt I ordered the wrong size so I can't wear it so I have to get another t-shirt. So but I do like that I love making stuff and um I guess in my past life you know I was a marketing person so I did a lot of ads and things like that. I I like creativity and I'm always thinking of things that we can do and uh we have tons of projects Greg just ordered a 3D printers so he can make stuff because we're hoping to have a ALS garage sale on the 6th of June but I'm like oh my god I'm like we gotta do a lot of stuff between now and then

Hayley 42:27

so so like what kinds of things is he gonna print?

Jodee 42:31

Well so he got this idea from his brother his other brother that we were at in Grand Prairie that has this 3D printer and a couple of things that uh his brother has made he made a huge giant the Star Wars spaceship uh Death Star is that it he's also made cups like you can print a cup figurines things like that but this is his baby right now he's gonna figure this all out but I thought was thinking one of the things he could make is the flower and it can be made in purple I think because they come with different colors inks or whatever and then maybe you could put them onto a pin and things like that and sell them. I was thinking to make bumper stickers or like just window stickers for your car that say ALS sucks or FALS to put on your window and sell them and then the money would go towards the walk. I have so many ideas are just flowing everywhere and

Flynn 43:36

to leave us off Jodee shared a message of camaraderie and the beauty one can find in community amidst this harrowing disease.

Jodee 43:43

It's a shitty thing it's really a shitty thing you can't put it any other way but um I think once you find the community there's there is hope there's friendship there's support which everybody needs so you just gotta look for it. If I can be that to someone, that's great. And I'm always willing to do that. So how's that?

Flynn 44:05

That's great. Thank you very much.

Hayley 44:16

I want to extend a very big thank you to Jodee for joining us today because Jodee and Greg lost somebody very close to them in the past week. So they had a funeral to go to and they had to drive through a big snowstorm in Alberta to get there. So they had a rough week. It would have been reasonable for you to say, hey, let's reschedule this, but you didn't. So thanks for joining us today. Just wanted to say that for starters.

Flynn 44:42

Yeah, and I uh uh I was, you know, kind of rudely kicked off our call before I had a chance to to thank Jodee. So it was very admirable to still show up and show up in a big way, too. I think we had uh a very nice conversation about a lot of important things. Uh, what stood out to you?

Hayley 44:59

Well, I was definitely bothered by the fact that the day of Greg's diagnosis, like, it's a tough day no matter what, but a little bit of better bedside manner could have made it just slightly less bad. That bothers me. Bothers me that Jodee, you know, hasn't really felt particularly well supported in her province. And that's that's nothing against the ALS Society of Manitoba. It just sounds like it's more of a staffing issue than anything else, really. That's uh unfortunate. A Minister of Health in Manitoba, while they may be doing a lot to support the ALS community in Manitoba, they need to do more. And I hope that they will meet with their constituents, people like Jodee who have concerns and that they will listen to those concerns.

Flynn 45:49

Yeah, I hope so too.

Hayley 45:51

I guess what really s stood out probably most for me is that Jodee has found a way to in some ways get some of the support that she needs. She has played clearly an important role in getting that support group going. And then the other thing about her is that she's very supportive of the other people in the community, like maybe specifically the people that have done the Cali program. So those are the parts that stood out for me.

Flynn 46:16

It's great too that, you know, she talked a little bit about being a little bit nervous about foraying into advocacy, and you know, how she's becoming more comfortable with it. And we had that discussion about the bucket list piece and whether or not advocacy has somehow made its way onto the bucket list. And, you know, they are sort of distinct things, but she said yes, right? That there are certain advocacy things that she now would consider goals of hers. And thought it was interesting that she brought up Lou Gehrig's day for MLB teams and how the Toronto Blue Jays don't really do that. That was pretty surprising to me, uh, considering the way that Canada is sort of in some ways on the forefront of ALS research and advocacy. That's just surprising to me that, you know, the the only Canadian team in the MLB doesn't really seem to give a crap about it as of right now.

Hayley 47:06

Yeah, I don't know. It is it is surprising. I will say this that another one of our CALI graduates, Faye Murphy, who graduated the same year as me. Uh I know Faye threw out the pitch at technically the Lou Gehrig's Day in 2025. And I remember her saying that she is trying to do some more work with the Toronto Blue Jays to maybe get more support from them. So, you know, maybe, maybe there are some changes coming. I don't know. It's yeah. I think that's probably just another example of something where the more people that are involved, the more likely that organization will support the community more, perhaps. Sure.

Flynn 47:44

Well, you know, maybe we can connect Faye and and Jodee in that effort and they can maybe work towards that one together.

Hayley 47:51

Yeah, yeah, that would be great. Two powerhouses.

Flynn 47:57

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 Jodee Karlowski for joining us and sharing her story.

Hayley 48:07

To access a full list of resources mentioned and references used in the creation of today's episode, please check the episode description where you'll find all the links you need.

Flynn 48:16

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Hayley 48:35

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 48:47

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.