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- [00:00]
A
Welcome to the msgym podcast. I'm your host, Jodi Feltham, and today we're going to get away from the cold and travel to a land down under to speak with longtime Ms. Gym member Carrie. Learn about Carrie's rare diagnosis and how she manages it through diet and exercise. Carrie will also share with us some of her challenges in living with a chronic illness and how she has learned to focus on the things that matter most. Hello, Ms. Gym family. So glad you could join us for another podcast of the Ms. Gym. Today we are traveling far away and I have to say it was a little bit tricky to schedule this podcast because we're talking with longtime member Carrie, who is all the way from Australia. So, Carrie, thank you so much for joining with me today.
- [00:53]
B
Oh, thanks, Jody. It's a pleasure to be here. I love your podcast.
- [00:57]
A
Oh, thank you. And it's so nice. I always love hearing different accents. So, so glad that we can chat today. So, Carrie, you and I were chatting before briefly on email as we prepare for this podcast. And I know this is the Ms. Gym podcast, but there are many other conditions represented in the msgym membership. So would you tell us a little bit about your medical cond?
- [01:26]
B
Sure. Thanks, Jody. I have a rare muscle wasting disease, and when I was trying to get diagnosed, as happens with many people, I got a bit gaslighted. But when I eventually got my doctor to listen to me, she thought I might have Ms. Or in Australia, we call it motor neurone disease, als. But in fact, it took some. Another probably eight months of going through a sort of testing and I was diagnosed with a condition called inclusion body myositis. It's an interesting name. Everybody shortens it to IBM. It's like, you know, and it's called inclusion body myositis because these protein bodies accumulate in the muscles and they basically stop the muscles from functioning and. And the muscles actually atrophy and they say to you, you can't regain them. So it's really rare. It's depend because it is so rare. It's even difficult for them to say how many people have it, but it's like maybe somewhere between 10 and 50 people in a million. So down here. Yeah, I live in Australia, so. And on the west coast, far away from the east coast, where all the big cities are. And so based on our population, you know, there's less than 2000 people in Australia that have this condition.
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A
Okay, now how did they. You said that there's a differential diagnosis of Ms. Or als. How do they go about Dying. Diagnosing you with IBM and.
- [03:03]
B
Yeah, so with IBM, a big, A big part of the diagnosis is your clinical symptoms. So my, my first symptom actually was weekends. And then I started having difficulty going upstairs and then I started falling. But over probably five or six years, my doctor. And at this point I was in my 50s, so I'm. I'm now 66. And at that point it was like, oh, you're overweight, you're menopausal, you've probably got arthritis, it's your age. So of course, when they tell you those things, do you go back if you haven't lost the weight and you haven't done this? No. You just keep going. Okay. And this is where, like, the brain's amazing. And I love Trevor's neuroplasticity focus because of course, you make all these adaptations without realizing.
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A
Absolutely.
- [03:58]
B
So it was. Eventually what took me back was I couldn't operate the clip to put my dog lead on with my hand. It was becoming really infuriating. And also I realized I couldn't step up at all on like a step ladder. And I went back going, this is not just my age or arthritis. This has to be something else. So then sent me to a neurologist. So it was my local GP sent me to a neurologist who then. That took me four to five months to get in to see a neurologist here in Australia in the private system. And then he sent me for an EMG where they test what's happening with unit with your muscles. And they did that in my legs. And that was really when actually the neurologist doing the testing couldn't tell me, but he was like, I think it's quite clear what you have based on your symptoms as well, because with inclusion body myositis, it's in some ways very different to Ms. In that we don't get spasticity and we lose muscles and we lose our flexors in our limbs is one of the first things. So my ability to curl my head, like you can see here, I can't curl my fingers.
- [05:17]
A
Okay.
- [05:18]
B
And you have specific things. You lose your quadriceps, you lose your dorsiflexes. Part of the falling over is you trip over your own toes, you lose balance. So I had all the classic symptoms. And the next thing they would often do is a muscle biopsy. Right. But at the time, I opted not to have the muscle biopsy. I had twins in their final year of high school, and my husband at the time was working away overseas, which is what he has done mostly. So I was single parenting.
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A
Okay.
- [05:55]
B
Been going through exams, etc, and I went, will you do anything different? So that was, the next thing was like, actually there is no treatment.
- [06:06]
A
Okay, okay. Can they treat your symptoms? Sorry, can they treat your symptoms though? Like, as opposed to, like, with ms, you can be on a disease modifying therapy or you can have symptom treatment, but for IBM there's no treatment whatsoever.
- [06:24]
B
So that was, the neurologist was like, it wasn't an area that he was particularly specialized in, but he was like, the only thing that has shown benefit is exercise. So I'm going to refer you to a physiotherapist for an exercise program because what they try and do is help you to maintain the muscles you still have because it has this, it sort of attached specific skeletal muscles.
- [06:52]
A
Okay.
- [06:53]
B
And then over time it becomes more debilitating.
- [06:57]
A
Okay.
- [06:58]
B
So it was a case I did. So I didn't have to make any decisions. Like, I, you know, within the Ms. Community, I see people trying to make decisions what they're going to use. I'm like, well, maybe that was a positive. I didn't have to decide what treatment.
- [07:11]
A
Yeah, okay. So it's interesting how you, you talk about the differences between them, but at the same time there's a lot of overlap with Ms. Symptoms. Like I think about so many of the posts that I read in the members only corner, the Facebook group for members, so many of the symptoms that you have, like weak, weak hands, difficulty gripping, tripping, weakness and the like, like so many of those things are an overlap.
- [07:38]
B
So yeah, you can see why the doctor thought it might be Ms. And.
- [07:44]
A
Obviously Mississippi is a much more common neurological, you know, sickness than obviously I. So how did you go about finding the Ms. Gym?
- [07:55]
B
Oh, so well, actually I had, had, I, I, one of my children had had lots of health issues. And so I had already seen the power of early intervention with exercise to help. Right. And also being introduced to dietary things and had got involved in like clean eating and getting rid of toxins in our home. And through doing that, I'd connected with a number of friends who had relatives with Ms.
- [08:28]
A
Okay.
- [08:29]
B
And then through them and having conversations with them, it was like I'd heard about Dr. Terry Walls. So I went and I'd already bought her first book, Aligning My Mitochondria, because it was, I was trying to help, you know, I had this teenage daughter who at 17 still needed to have a really good diet to manage symptoms for her conditions and, but no longer necessarily believed what her mother said.
- [09:00]
A
Of course.
- [09:00]
B
So having an external person that I could go, but look and look at this research. And then. So I joined her Facebook community. And that's where I heard about the Ms. Gym, when Trevor was doing, like, the free YouTubes and had the free Facebook group. And. And this is all, you know, like, I was like, by then diagnosed with IBM, I'd started doing exercises with the physiothere, were some specific exercises that had been researched for IBM actually here in Wa. Oh. So my background is I'm a researcher.
- [09:36]
A
Okay.
- [09:36]
B
So as soon as I got my diagnosis for IBM, of course, I went home and Googled and looked for research, and I found some papers that had been done here in Perth actually at the Neurological Institute for Research.
- [09:52]
A
Okay.
- [09:53]
B
Where they'd actually taken cohorts of patients with IBM and put them on a home exercise program. And I outlined also, like, what they measured to track and everything. And so that involved a gym that had, you know, bikes and. And equipment that you could measure, all sorts of items. A dynamometer to measure your grip strength. So I went hunting then for a gym that could help me do that. So I was already doing the exercise. And I guess, like many people, when you have a chronic condition, you know, it's different if you're doing rehab, like. And even the gym that I found was used to people who'd had a knee replacement or a hip replacement. They were attached to a hospital where you go and you do a program and you improve. But of course, something like this, you don't. It's forever. And they're not really set up to help people like that. So I'd started not being so consistent, and I was like, I need to find something else. And that's where I love Trevor's energy, you know, so from having seen it in the World's Protocol Facebook group, I was like, okay, I'm going to look at this guy. And I was like, I just loved him. I. And, you know, back in those early days. So that was 2017 then also as it got going and, you know, the Motivation Mondays Misty is Misty moments. Yeah, the Misty moments. I really needed that mentor and motivation input to keep me doing things, you know, like, that was. That was how I found it. And then once I'd found it and once he started the paid membership, I was like, oh, I just really have to do this. I. So such incredible value for money compared to the, you know, going and accessing the gyms in person and the therapy. So that was how it came about. It was actually through the Walls protocol group.
- [12:02]
A
That's awesome. That's awesome. So are you still part of, like, do you follow the Walls diets currently or modify. Yeah.
- [12:12]
B
So I mean, the thing for me was, because the Walls protocol, because she wants you to exercise, that was, you know, so for me, it made a huge difference. And I'd had that experience as a parent, seeing the difference that food could make to my daughter. We'd been through fodmaps, diet, GAPS diet. We'd done all these different things because she had learning and physical challenges and. And I'm a researcher, so I loved the fact that Terry Walls does the research and had done the interventionary research. So I started on the diet. Now at that point with IBM with inclusion body myositis, it has a huge impact on fatigue. And now like a decade later, they're actually saying we have abnormal mitochondrial processes. Really? They still don't have any medications, but there are trials going on. And so in. At that time in my disease journey, I would have two to three days a week where I couldn't get out of bed due to the fatigue.
- [13:19]
A
Okay.
- [13:20]
B
Right. Fortunately, by then my children were old enough to be driving, so they were driving themselves to things. So I went. So I bought the money, my mitochondria, but I went on. I think it was like level two of the diet. So I took out all gluten, dairy, added in, all the vegetables, all the clean protein and the. And the, the bone broth. Okay. And actually my kids were happy to support me. We were already doing pretty healthy food because of my daughter.
- [13:55]
A
Yeah.
- [13:55]
B
So we all were doing half cup of bone broth before breakfast.
- [13:59]
A
Fair enough.
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B
You know, breakfast was like a cooked breakfast, so I didn't have to do it alone. Right. They were happy to go along. And you can tweak it, so it's very much. You know, you can do a barbecue in a big salad and you just not using the usual dressings and things. And within, at that point, as well as the fatigue, I had really bad dysphagia, so I couldn't trouble swallowing.
- [14:24]
A
Yeah.
- [14:24]
B
Really huge. And at the end of the day, if I went to take. I don't know what was I taking at night, Magnesium or fish oil or something. I couldn't swallow it. It would get stuck. Right. So within three weeks, I could swallow those pills at night again. Wow. My fatigue had just lifted. I was like. It was like. I couldn't. I almost could not. I couldn't believe it. And you know, really, I don't think we had that terrible A diet before, but I was eating gluten and dairy and some processed foods before and everything wasn't terrible. And a couple of weeks after that, so I was like, well this is interesting. But you know, a couple of weeks after my sister had like a morning tea with scones and jam and cream and you know, all of that and I allowed myself to indulge, you know. And that is, the feedback was amazing. That night I couldn't swallow again. So in those early days that was really convincing and I was like, this is amazing. You know, they, and my daughter was, she was really into sports. She's the one with the health issues and she was fencing and she was right into all the nutrition side and everything and so she was happy to do it as well. So having that other person doing the big nutrition thing in your household was really helpful and I was really fortunate that one of my friends down here is actually married to an American and he comes from Illinois and they were doing a holiday over there. And Cherry Wolves in those days was running like three day seminars and retreats and which you could just attend as a patient. But also I decided to keep myself motivated. I wanted to do her certification to teach the world's protocol.
- [16:27]
A
Oh, wow. Okay.
- [16:28]
B
So I enrolled in her course to be one of her coaches and I traveled to America and went to the seminar and retreat.
- [16:36]
A
Okay, that's quite an adventure for sure.
- [16:40]
B
Oh yeah. That was like the whole Planes, trains, automobiles for sure. I had a family member in la, so I flew over to the train across to Iowa. Oh, and going to that, it's a bit like the community you have in the Ms. Gym. So. But you're in person with hundreds of other people dealing with mostly Ms. And different things and having, you know, choosing to make changes and investigate what might help them. So I became really committed and I spent, I went a couple of times actually I was lucky to go a couple of times when it was in person pre covered. And so I'm still in the Walls Protocol coaching group but I have not done any coaching for the past year because last year for me was a big family event year and I have to manage my activities for sure. Yeah. So I'm still a Walls Protocol follower. And interestingly for last year when I went through a mat when I had falls and down times, like I record my falls in my phone diary so I can go back and look look at what else it's when I go off, I, I, I indulge in things that you wouldn't normally indulge in. On the Walls protocol. Because I'm human of course, and it's like. And I go, this is when I fall over, this is when these things happen. So yeah, I still, I'm, I'm still following the walls protocol diet, but the lifestyle is like, yeah, doing the daily exercise, you know, it's like. And that's where I'm still in the Ms. Gym. So what, six, seven, however long it's been?
- [18:27]
A
Six, seven years. Yeah, no, it started the free stuff started May 2017 and then the membership was December 2017. So it's been, it's been a long time now. So yeah, this year, I guess this may will be what, like eight years. So. Wow, amazing. So that is amazing. So that's, that's incredible that you had, you know, you want. Your one daughter was, was doing the diet with you. So that helped motivate you and then just tracking, tracking your own progress and some of your setbacks, like that would be motivation in itself to stick to it. But like we're all human, right? And we, we all do want to indulge, right? And sometimes when we restrict, restrict so much that sometimes it's, it's hard when you get opportunities to, to have a treat outside. Sometimes it's hard to, to hold back or not to overdo it. So definitely for sure.
- [19:24]
B
And I do find the tracking for me helps. It wasn't enough though, so at times I would get really slack with the msg. Okay, and, and you have setbacks. You know, fractured an ankle, did this, did that. But I think being in the members community and being able to share about that was great. And I joined a buddy group because of that reason of like in my, in my own life when I was first diagnosed, I had a close friend who was going through cancer, right. So and, and another close friend whose sister had Ms. So there were a couple of people that understood what it's like to manage a chronic disease. But really I didn't have a support group outside of that, you know that and I think that's been the big thing to me of being in the Ms. Gym because myositis is. Well, there's two other forms of Myositis, but IBM, it's rare. So we have a great patient community here. But you know, and we get together here once a quarter here in my state in Western Australia, but There's only like 30 of us.
- [20:44]
A
Okay.
- [20:46]
B
And, and I often, I, I often will talk to people about what I'm doing. I've tried to encourage people to join the gym, but you get A bit of flashback of like, but it's not the same, you know, and if I post things on the patient groups that people, I sometimes feel quite attacked because they're like, but it's myositis, it's muscles, it's not ms, it's not neurologic, you know, like, so sometimes you can encourage people and sometimes you just have to sit back and go, well, you know, I've let them know it's there.
- [21:19]
A
Yeah.
- [21:19]
B
And I found one of the key things for me in the Ms. Gym was the importance of the positivity, the things that people are trying to do. And so in order to try and keep myself exercising as my hands start to deteriorate more, I joined a buddy group. So I've been in that for quite some years. The Scribblers, I think it was called the Grinders and the Scribblers. And, okay, I can only turn up at one particular time where we're not a large group, where are only three or four. But I think I've lost track of how many years I've been doing that with Michelle, who hosts it, and Kathy hosts, but I don't make it to her one. And that has been amazing, like, three, four years. And that gave me that consistency of actually doing that sort of three times a week. I make it to that. And I joined another buddy group where there's a few of us in Australia, so we're on the same timeline. We don't exercise together with that one, but it was like, let's keep in touch. And then I've managed to meet up with one of those people and, you know, things change over time. So then I wasn't working when I was diagnosed because of what my kids were doing, but I went back to work in, like 2019, part time. And up until then, I had quite. I was being quite consistent with my exercise.
- [22:55]
A
Okay.
- [22:57]
B
But then I let it fade away. Right. I was doing pretty well. I hadn't really thought about the additional stress. And I mean, my work, I loved my work. I was working at one of the universities helping researchers in the medical field connect with patients who had diagnosis relevant to whatever research they were doing.
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A
Okay.
- [23:21]
B
So it was that whole patient involvement. But I only did it for a year because my physiotherapist was the one that flagged with me. Like, so every six to 12 months I go back and I still do all the testing that I started doing back in 2015. Yeah, on my muscle strength, and you expect a certain level of degradation, but I'm I'm staying above the norm.
- [23:47]
A
Okay, that's great.
- [23:48]
B
So, so I, in my house I don't use any aids, but when I go out, depending on what I'm doing, if I'm, if I'm going and not having to hold the dog, I'll use trekking poles. But if I'm going with the dog currently, I'll use a wheelie walker.
- [24:06]
A
Oh, right, right.
- [24:07]
B
And I have a light foldable electric wheelchair because both my kids were living away in different places and if I wanted to go further, so. And you know, I think some of that has also come from being in the Ms. Gym community where you get to chat with people about what they're using and you get ideas. The trekking poles definitely came from Trevor, otherwise I'd just be using a cane.
- [24:33]
A
Yeah, I know. That's, that's one of the huge. That was kind of Trevor's. Trevor's big thing was the trekking poles. I think that revolutionized so many things for so many people, so.
- [24:44]
B
Absolutely.
- [24:46]
A
And you know, in the members only corner they talk a lot about energy conservation. Right. And not doing yourself in just to, to prove a point or, or for, for safety too. Right. Like sometimes it's really important to use, you know, a wheelie walker. Like maybe you can walk in inside independently, but then in stressful situations. Right. It's not safe. And you were mentioning before that you've had a few falls. Right. And obviously whether it's Ms. Or any condition. Right. Falling can really set us. So it's important not to put ourselves at risk in that way.
- [25:21]
B
That's right. And I think that thing of the different environments, and I know Trevor talks about that too because I definitely find, you know, there are certain environments, whether it's the lighting or the pattern on the carpet or different external. External inputs that affect my ability to balance myself and move. Okay. So that's. And last year, as I mentioned, was huge. So both my children were finishing their second degrees. We had graduations in other places like I had to for my sons. It was on the other side of Australia, you know, which is the same sort of width as the States. And, and my daughter actually studies in Italy, so that was a 30 hour journey to get to her. And I looked at the year ahead and this is the benefit of, you know, I've worked with my physiopath therapist a long time and he had this great analogy like Trevor about being athletes. Yeah. So he was. If you think of yourself as an athlete and you look at this, it's like You've got, you know, a local competition, a national competition, then you're going to a regional competition and your Commonwealth Games, and then you're going to the Olympics.
- [26:37]
A
Absolutely.
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B
What are you going to change? And I mean, that was part of me stopping working, doing things differently, looking at, you know, doing the walls, protocol, coaching, because it was like, actually, I need to change the whole focus of my life. And I started a buddy group doing Reconnect. And so there's just half a dozen of us in the group that meet. We meet Monday to Friday for me at 6am so.
- [27:06]
A
Oh, wow.
- [27:06]
B
And there's two, two other people in Australia. One other is in my city and the other one is half the way across the country. And then the other three are all in the States. So. And I mean, I, I recognize and we've had some conversations in MOC that, you know, it's tricky to do your core program together because you have all different needs.
- [27:29]
A
Absolutely.
- [27:30]
B
But, you know, we attach. And we were like, okay, but the consistency. So we've exercised Monday to Friday Daily since May 2024.
- [27:41]
A
Okay. Wow. That's phenomenal. That's phenomenal. So you were talking about really focusing the last year, really focusing on what your priorities are and obviously being there for, for your kids, big, big events. What would you say might be another goal in the next few years for you? Like, what are you hoping to do? Whether it's traveling or achieving something. What are you hoping to see?
- [28:06]
B
Yeah, the next few years. So I have a couple of. I, I mean, one thing for me is staying able to visit my daughter in Italy. So she stayed working there once a year. I'd like to do that trip each year. So that's a. To do that, I've got to try and keep my body and my health as well as possible. But another thing for me is doing a bit of reconnecting socially with friends and family because I've found this huge focus. You know, it's the same when you have Ms. As IBM, except with IBM we have to, we have to hunt for supports. There's no, like, our patient society is just all volunteer patients. There's no funding. There's no right. We can't, we can't sort of link into things that are already set up, which is another reason I'm in the Ms. Gym. So it takes a huge amount of time. So. So I'm hoping to gain some of that time back and put a bit more of an emphasis on socializing within what I'm able to do and, and recognizing Maybe it's going to be. I have to like invite people over to my house every couple of months because going out can be so challenging when you can't do stairs, you can't cope with different light, different sound, all those types of things. And hopefully keep consistent with my exercise. And I, I plan to get back to doing a bit more coaching this year, which I haven't done for the past 15 months, so that I've got that additional. The thing I like about it is it means it's easier to stay up to date with the latest research of what's happening, even if it's not directly in my diagnosis. Within that whole neurological neuromuscular field, it.
- [30:02]
A
Sounds like you have, you have many different passions and you are very giving of yourself. Right. Wanting to be a coach and, and making. Even when you're, when your daughter was not well, like you were, you were all in to help her. And it sounds like you want to provide more for your community too. And, and you are so willing to be adaptable like you said, you know, maybe people coming over to your house to help as opposed to so many people would say, well, going out is too stressful to me doing this, I can't do this. So then they just shut everything down. But you sound like you're, you've become so flexible so that you can do these.
- [30:41]
B
I mean, it's understandable. And I've been in that space that you talk about of sort of having to just focus on yourself really probably for the last two years because I knew I had all these things coming up. So I think at times it has value to do that and just really focus on self care. And I've been lucky. You know, I've had a couple of people that I've socialized with throughout that, but I think now I've sort of gone to this next level of going, okay, actually now I want to widen my social circle which. And I'm only, I'm doing that really for self care and self support and recognizing that's something I miss. And you know, doing the coaching helps me as well because I'm getting those constant reminders of how do I look after myself. I have a little. I try and do. I try and do at least three self care things every day. I mean, one of those is walking my dog. Like for me that's self care because we get to walk in a nice environment and you know, I'd, I'd really like it if I can get back to walking without having to use the Willy Walker But I'd rather be safe. Okay, so it is that thing of being safe. And then another thing for me is every night trying to do three gratitude things. I don't have to write them down, but just thinking before I go to sleep, what am I really grateful for? And, and recognizing, it's hard. Like my, my local physio, she gave me this really interesting analogy when, when you have, you know, a chronic condition and she lives with one, too. She said it's like, it's like being at the beach and trying to dig a hole in dry sand. Like you can't stop. Whenever you stop, it starts to feel anything.
- [32:28]
A
Okay. Yeah.
- [32:29]
B
Right. So it's like trying to find a way to support yourself, to keep going.
- [32:37]
A
Absolutely. Absolutely. Well, I can't believe how quickly our time has gone. It's been, it's been so amazing talking with you. I, I really enjoy that you, you can tell that you are a researcher. Just the way you articulate yourself and, and you speak like, I'm learning so much from you. And, and I re, I really appreciate so much of what you said. And, you know, you, you touched on that piece about gratitude and how important that is in our healing, right? To, to look for the things to be grateful and, and it's very hard to do at times, especially when you have falls or you have a really, you know, a really rough day or week or month. But it's, it's so important. And, and I'm glad that you have the, you know, the support of the, the MOC and hopefully other people around you too, because, you know, we all need each other. We can't do this alone, so.
- [33:31]
B
No, absolutely. And being able to go in the MOC and just plug into the different things. I love the fact that Trev is back doing more lives. Little chats like that really helps you, I think, when you're going through those downtimes.
- [33:47]
A
Absolutely. And then you can just search, you know, whether it's, whether it's your issue or just a symptom that you're having. And, and again, I always say that it's amazing that, you know, the msg, it's online, but it's international, you know, like you and I are speaking, we're 13 hours apart, but in the members only, there's always someone there. It doesn't matter what time of day it is in your country, there's always there. So I, I, it's.
- [34:14]
B
Because of the Ms. Gym now. For me, it's been so transformational. Monday to Friday to get up, put my exercise gear on, go in my TV room and meet up with these other five people and exercise, you know, and like, we'll chat for a few minutes, then we do our program and then, and then we'll have a chat afterwards. And like, that just sets my day off so well. It's amazing.
- [34:40]
A
Wonderful, wonderful. So thank you so much, Carrie, for meeting.
- [34:43]
B
Thanks.
- [34:44]
A
And, and for teaching me so many things. And I know that the people that are hearing the podcast are going to learn things from you. And obviously, it's good to have more exposure and learn about other conditions as well. So thank you for your time, and I hope that you have great day. Thanks for tuning in to another episode of the Ms. Gym podcast. You can find more about the Ms. Gym on Facebook, YouTube, Instagram, and at the MSGym.com.