Living with Secondary Progressive Multiple Sclerosis

Kim: Welcome to the Learn From Me podcast series. I'm Kim Repcak and today I have the absolute pleasure of interviewing Matt. Matt is going to share his experience in learning to live well with secondary progressive MS. Matt was diagnosed in 2003. He now utilizes his wealth of knowledge and experience to support others facing challenges with MS.

Matt provides hours of phone support to other people who need support. Matt also facilitates the men's tally group. He's an MS ambassador, constantly raising awareness of MS in our community. We are so grateful for all the amazing support that Matt provides. A warm welcome, Matt.

Matt: Hey Kim, how are you today?

Kim: Really good, thank you. I thought we'd kick off, if you don't mind, perhaps providing a little bit of background. Perhaps when your MS changed from relapsing remitting MS to secondary progressive MS perhaps what changes did you notice at that time?

Matt: Yeah, it was pretty confronting at the time, Kim. I guess it was really indicative by mobility changes.

I was sort of moving from walking around normally to using a walking stick to a four wheel walker and then finding that wasn't helping me out very much. I had a couple of falls when I was working. And I needed something more stable for me to be getting around. And the neurologist mentioned something about an EDSS score.

And I'd never heard of that score before. And it was really just that scale of mobility was an indication about where things were progressing.

Kim: So, it was mainly your mobility that you noticed, Matt?

Matt: Yeah, pretty much. I mean, the other symptoms that were still around there, the main impacts on me and around dexterity and other things, but the mobility was the most noticeable.

Kim: And what was going on for you in your life at that time?

Matt: I was right in the middle of building a career in 2013 when it was all the sort of confirmation about, yes, it's moved to Secretary of Progressive. There are lots of things going on in your life. I was in a pretty high-power job and in a senior position with a major bank and building a family and, you know, it was a big shock to the system.

Made me recognize that things weren't as progressive and smooth as they were before.

Kim: And was it a gradual change, Matt, or did it happen quite rapidly?

Matt: I think it was probably more a gradual change over that 10-year period. But once it became clear that, that a four wheel walker wasn't going to help me out that much you started to recognize that, yeah things have changed dramatically.

Not part of the plan. You all of a sudden have the control that I wanted over my own life. And my wife would tell you I'm a bit of a self confessed control freak. So, when you all of a sudden don't have the control of that part of your life anymore, the uncertainty kicks in again.

Kim: Absolutely. And you mentioned you're at that busy stage in your life of creating a career, having a family. So, lots of changes were going on for you at that same time.

Matt: Yeah, that's right. And I still remember a pretty negative comment to me at the time as well when I was working. Wouldn't I look more professional turning up to a meeting in a wheelchair than with a four-wheel walker?

And that's the kind of position where people don't have a full understanding about MS as an invisible disease and the impact that it has on your body. And so, one of the key things I want to talk about, being a peer support volunteer, is that there are no two MS journeys that are the same.

And going out as part of my MS ambassador role, to try and help educate the community about what does it actually mean for someone to have MS. And, you know, I think education is a great idea. It was certainly something that wasn't really available in the way it is now when I was first diagnosed back in 2003.

Kim: Absolutely, Matt. That education is so important. And I think coming from someone with MS, it's very powerful indeed. Now, my next question you've hinted at already, and that is, what's the most difficult thing that you've faced? And what are some of the strategies and ways that you've adjusted to the changes?

You've mentioned the issue around control and the loss of control, and I'm just wondering, you know, what are some of the strategies you've used in coping with these changes?

Matt: Yeah, really good question. I think one of the biggest confronting challenges was facing medical retirement at the age 43 you don't really expect that.

You see, the retirement age is 60 or 65, and all of a sudden you have to medically retire. And that brings another round of uncertainty in terms of financial support for your family. How does that change your social and family life? What does it change with the way you holiday even, for example?

But for me, one of the ways of doing that was getting more and more involved as a volunteer when I'm medically retired. Increasing the amount of peer support, voluntary work that I do for MS. And something to think about myself, my family, and my own health. So, re prioritizes, really changes your focus a bit.

It's the three prongs to the way I try and deal with it. There's the physical health. There's the mental health and then there's the diet and nutrition. Three ways of me looking at it. So, in the physical health, I joined the NeuroMove gym. Now I'd never been a gym bunny when I was working, but I now go three times a week.

I have a one-on-one session with an exercise physiologist, and that helps with the physical side. But there's also a social and community engagement part of that which assists with your mental health. The mental health side with the voluntary work and peer support voluntary work I do, it gives me the chance to try and help empower other guys with MS to live their own lives as best they can.

The uncertainty is always there. You don't know what tomorrow is going to bring. And then the diet and nutrition, trying to think about, because I'm no longer as mobile as I used to be physically, being in a wheelchair now what does that mean for me and my diet and nutrition? There's been a range of services through MS, various Webinars and other sort of conferences around diet and nutrition and engaging with another allied health practitioner with a dietitian for, to focus a bit more on that nutrition and diet overall.

Kim: Fantastic. So, you've really been proactive Matt in looking at those prongs in your life, the physical, the mental, and also nutrition, lifestyle factors. That's fantastic.

Matt: Yeah, that's right. You know part of my I guess, the other cap that I have on is being a husband and father to two kids. I need to be the best version of me that I can be.

And supported by my wife, I've often referred to her as an octopus on steroids. She's juggling so many balls in the air as my primary carer and working and looking after the family as well. So, I need to be the best version of me that I can be.

Kim: A real role model, I think, Matt, you described by other people, you're often inspiring.

I hear you talking to other men with MS and talking about the importance of them being proactive and linking into things, accessing supports. I'm wondering on that note, what are some of the services and supports that you've utilized, Matt?

Matt: A lot of it is through the MS education, so the various webinars and other podcasts and other information sources.

Through my tele group, I often get guest speakers on particular topics that the guys have raised. And that could include mental health and wellbeing, particularly during the COVID pandemic times physical exercise. We've had some presentations around diet and nutrition. The importance of some of the employment support services that are available for people who deal with MS, or live with, I'd say not deal with it, but live with the challenges of MS.

I want to make it clear that MS is not a death sentence. And I know there's a way you can, you can choose to deal with it, I guess. I choose a fairly positive approach. But like I said right at the start, there's no two MS journeys that are the same, right? So, someone may not as easily adopt that approach.

So, I'm trying to help the guys, because I'm not a medical expert, I don't have all the answers so I'm trying to give as much information to the guys as I can.

Kim: Absolutely.

Matt: To go and find out that information that's relevant and applicable to them and their own journeys. Back in 2003, there wasn't a whole lot of information or support type services available and I think MS has come along in leaps and bounds in that front.

Kim: Absolutely. I know one of the services that you utilize, Matt, and I thought for the listeners perhaps going to a little bit more detail is the NDIS and how that might've helped you in adapting to the changes that you're going through.

Matt: Yeah, sure. I mean, that was one of the, I guess, the starting points for me in getting a NDIS plan in place.

I met with the NDIS engagement team, I think they were called to sort of do a pre planning session and getting me to think about what sort of activities that I do and the family does, what sorts of supports might be available. It even got me thinking about some that hadn't even been considered with areas of support that I might need.

That's one of those challenges in life I guess, there's no crystal ball to pick out what you may or may not need. But being able to leverage off the advice and expertise from MS in terms of based on their own, own client experience as well, helped shape the sorts of supports that I then was able to ask for funding and support through the NDIS as well.

So, to me that was invaluable and I guess I'm trying to share that with the guys as well.

Kim: That's great.

Matt: I'm encouraging them to register as participants if they don't think they need it now.

Kim: Planning ahead.

Matt: Yeah, and I think you have to plan ahead a little bit. And I've heard it referred to Dr. Sally Shaw, it's also being the CEO of your own life. And I think that that's a perfect description for us living with the challenge of MS. You have to control as much as you can. And to me it's much information from multiple sources and not just dr. Google is really important and having a very strong medical team around you, both primary and allied health care professionals. It's the way that helps me manage that.

Kim: Absolutely. And as far as adapting, what are some of the adaptations you've had to make? I'm thinking around the home, you mentioned utilising a wheelchair. Are there any practical tips and tricks you'd like to share with the audience, Matt?

Matt: Yeah, so that's where the NDIS funding has been invaluable in terms of helping to fund home modifications.

The wheelchair that I use now, but then even just thinking about some things to help you open and close the front door. If you try and open up a soft drink bottle lately, that's very, very hard. And if you don't have that dexterity in your hands, maybe a one touch bottle opener. So, it does it automatically for you.

Just some little tips and tricks to think about. A strap to help move your leg around if your legs are quite stiff. Maybe it's the case of, you know, being now I've got the wheelchair the power wheelchair being much more independent in life. I don't need to rely on someone to push me around anymore.

I guess it's going to depend on everyone's own circumstances. But sometimes it's the little things that you can do or get that make a big difference in how you operate your life.

Kim: It's about building in the quality, isn't it?

Matt: Oh, that's right. I think it's, yeah, the quality over quantity sometimes.

And I'd rather want to live the safest, most independent life I can. And if that means I should get some assistive technology to help me do that, then I'll do that.

Kim: I think sometimes it's hard though, isn't it? Asking for help. Some people are resistant to asking for help because they don't want to depend on others.

But in fact, it helps your independence, doesn't it? By asking for help and getting all these different gadgets and equipment.

Matt: Yeah, it does. But at the same time, it's not the, it wasn't the greatest feeling to have to swallow that pride and ask for that sort of help. When you try and do all the things to help out around the house and home and you can't do those sorts of things anymore.

You know, as the traditional role, often times that is quite hard to accept. And you have to swallow your pride. But again, as I said, trying to live my safest and most independent life. If that's the help that I need. Then that's what I have to get.

Kim: I heard a gentleman I was speaking to in a support group say that you need emotional and mental strength and that he made a decision to physically take charge of whatever he could do every day and that was his medicine.

So, he talked a lot around. Taking charge. And I think that's what you mean when you say how to be the CEO of your life and take control as best as you can.

Matt: That's right. And that's part of that 3 pronged approach I've talked about the physical health and mental health and the diet and nutrition are sort of the three prongs.

And I can try and control as much as I can of those things. I can choose how much physical activity I'm doing. I can choose what I'm going to get involved in. I'm a very strong and firm advocate for those with a disability, not just MS, but other disabilities that might be visible or invisible.

And I'm quite open to trying to challenge, constructively challenge the status quo. And it's through some involvements with our local council that then led into involvement with our local hospital. And it's really trying to change things for the better for people with disability. I think it's great.

Kim: It's fantastic. So Matt, we all have our good days and bad days. Just for some tips for someone that might be struggling out there, they might've just heard from their doctor that they've now got secondary progressive MS. What are some of the things you'd suggest to them to cope on those down days, those hard days?

What are the things you do on a, on a bad day?

Matt: On a bad day. Well, a sense of humor is pretty good. Sometimes you have to laugh at yourself and I remember one day I said to the kids, when are you going to put the bin in the rubbish? And they all, they all cracked up laughing at me and sometimes you have to just laugh along with it.

You get frustrated and angry and all of a sudden, you've got your words mixed up. But I always laughed along with them. And if they said something funny, I might pick up on that and say it back to them. I do a lot of a lot of reading. I enjoy live theatre and concerts and sports events. So, I look for things that are going to benefit me. Probably one thing that's really helped me a lot and with our family life is a companion card, and that that's a scheme that allows a person with a disability to go out and about and enjoy.

The things that other able bodied people will be able to do and have someone come along with them as a carer or a support person and their ticket is free.

Kim: Fantastic. I know you, I think you took your wife or she took you or you took each other to a few concerts?

Matt: Absolutely. I sort of go through and look at the, what's come up in the calendar and in terms of concerts and what have you and everything from opera to comedy sports events, even tourist attractions. Or the movies, you know, whatever it might be so let's find something that you're passionate about. And I think that really does help on those down days. And maybe it's a case of just going and sitting outside in the sun. I often do a little, what I call a 50, 55 phone free. So, for 55 minutes on the timer on the phone. Put the timer on and turn the phone off and we'll put it aside and just don't do anything. Don't respond to emails, don't answer any phone calls, messages, and just do something else for those 55 minutes. And maybe you reset the time ring and at the end of that you go, I'm actually enjoying that. Sitting outside in the sun getting a bit of vitamin D.

And it just helps reset your mind, I think, too. There's so much going on in life these days. There's so many distractions. And sometimes just having a pause in your day just resets your front of mind.

Kim: Absolutely. Well, thank you so much, Matt, for sharing your insight. You're a very positive role model and you help so many people with MS in showing them how to live well with MS and how to take charge. Any closing comment or tip that you'd like to leave the audience with today, Matt?

Matt: I think that my closing comment is, I'm stronger than my MS.

Kim: Fantastic.

Matt: Regardless of the day it can be the worst day in life. I know that tomorrow I'm still going to be around. I'm stronger than that, than my MS. Find out as much information as you can, leverage off the services that are available and get involved in a peer support program. Because sometimes the problem that you're having, somebody else has already dealt with the same issue. And they might have one tip that actually helps you dramatically.

Kim: Thanks so much, Matt.

For those listening, if you'd like to connect with someone like Matt, please reach out. Please call MS Connect on 1 800 042 138. And ask to speak to a peer support person today. MS also have lots of information on the NDIS and other support services that you might utilise. So don't be a stranger, please reach out.

Thanks for joining us today.