Hold on to exercise

Staying physically fit while living with dementia

Hold the Moment podcast S01E03: Hold on to exercise

Transcript

[BEGINNING OF RECORDED MATERIAL]

Kevyn: Hello, my name is Kevyn. I am a First Nations Advocate with Dementia Australia. These lands on which we are meeting are many countries filled with languages: similar and different. For more than 50,000 years, we have come together to trade knowledge: to learn and to teach. Today, we join to keep up that tradition. So with that in mind, we now pay our respects to the traditional owners, to Elders past and present, to those First Nations people joining us here today. Welcome and thank you.

Hamish: We are about to pull up at your trainer's house: his name's Nick. Tell me about what you're going to be doing this afternoon.

Jim: I lift weights, I do some cardiovascular work. And he also builds into what I do some balance work and memory. So look, those things, do they help, do they not help? But you know, he's doing everything he can to try and build the program to benefit me. It's just he's just very conscientious and very interested in trying to help. So you know, that's supportive.

Hamish: What's the hardest bit of the training regime?

Jim: I hate the bike.

Hamish: You dread the bike?

Jim: Yes. I hate the bike. Because... and he knows it. Sometimes I try to talk, because that's my thing.

Hamish: You talk your way out of the training.

Jim: Yes. So I try to get him talking. And at the end of the program, if it's too late, because he's got another client, you know, I could miss the bike. And he'll say: "oh I think you're you've missed the bike Jim; we've been talking" and I'll go "oooh, really?", and he'll go "only joking: get on that bike", you know. I'm Jim . And this is Hold the Moment, a podcast from Dementia Australia, full of real stories about life after diagnosis. It's hosted by me and my friend Hamish . Hi, Hamish, how are you?

Hamish: G'day Jim. So we're covering all the ups and downs of life with dementia across this series. And I know that staying fit and healthy is a really big part of living a good life with dementia. And I know, Jim, that you are active now, because you won't stop talking about it. But you weren't always a gym junkie, were you?

Jim: I'm definitely not a gym junkie. But no, absolutely not. I was active. We'd go on a lot of walks and things like that. But before my diagnosis of younger onset Alzheimer's, you'd never really catch me in a gym. But now I'm trying to stay more on top of it. You know, you got to do the best you can. How about your dad? Is he managing to stay on top of his exercise?

Hamish: So, Dad is living with Lewy body dementia and he does exercise a bit. We go swimming. He's always been an incredibly active man: was a rower in his early days, cross-country skiing, bushwalking, marathons, that kind of thing. So these days, we go to Bronte beach in Sydney and there's an ocean pool there. And it's quite accessible. So that's really important for us. But I think the best thing about it from my point of view, is that it's a really joyful thing that we can do together.

Jim: It's something you can share; something you can enjoy and remember that you did that with...

Hamish: Totally, it just means that the relationship is not consumed by all the other health stuff that's going on in his life. So, if you weren't a gym junkie before, tell me about this guy, Nick, that's kind of turned around your fitness journey.

Jim: He's absolutely great. He just won't let me quit. And you know, without him I really don't think I'd be able to discipline myself into doing, you know, what he's prepared for me, but his process is great because he's very understanding. Sometimes I can feel quite lethargic and don't have the energy, so he'll tailor it to suit me.

Hamish: All right then, let's go and meet the incredible 'super-Nick'.

Jim: Let's go.

[Music plays.]

Jim: Hey, Nick, my friend. How are you?

Nick: Good, good: yourself?

Jim: Yeah. All good. Ready for a workout. I always hate meeting with you, because I know what's coming. So this is Hamish.

Hamish: Hey Nick, nice to meet you.

Nick: Hey mate. How are ya?

[Noises of exercise equipment.]

Nick: All right. About there. Three, two, one: bar comes up. Good, middle of your chest for me. Yep, we're gonna go eight reps for you: find the middle. Good man. Nice and controlled. My name's Nick , I'm an exercise physiologist. So, background-wise, I've just come out of two years of private practice work.

Hamish: Okay, so what sort of people do you sort of deal with?

Nick: I get a really wide variety of clients that I look after. So I do a lot of rehab work. I do a lot of, I guess insurance WorkCover stuff, NDIS work, conditions through NDIS that I've covered before. So obviously, dementia, cerebral palsy, multiple sclerosis, ASD. So yeah, I've got to cover a wide variety of clients and that's, I guess, a big part of the joy in it, that it's not sort of seeing the same person every day, you get to experience a lot of different people and conditions too.

Hamish: Probably sounds like a dumb question. But we think of dementia as a disease of the mind. Why does the body and physical exercise matter? Does it actually help the brain?

Nick: Yeah, absolutely. So cardio, respiratory fitness, and yes, getting your heart rate up is going to be one of the biggest positives for something like dementia and really any condition that has a neuro element to it. So getting oxygen to the brain is going to be huge in that regard. And that's a lot of evidence in regards to that, of how helpful cardio exercises for neuro conditions.

Hamish: Jim is obviously a really fit, healthy guy. Does he need much help? Does he need specific tailored exercise?

Nick: Yeah, absolutely. So I know, Jim looks, looks a million bucks.

Hamish: That's what he says, anyway.

Jim: I'll give you that tenner later.

[sound of cash register]

Nick: So typically, a lot of people sort of focus on purely the cardio or strength side of it. But I guess, as you've seen before, through our session, it's really important to also integrate things in, like balance, planning, memory, all those sorts of aspects of cognitive function.

Hamish: What stands out to you, you know, in that sort of list of stuff that you wouldn't have thought of doing on your own?

Jim: Oh look, you know, I've never been a gym junkie, or interested in doing the things I don't like, like lifting weights, or, you know, as we've mentioned, the bike and things like that, where he gets me to get my heart rate up and stuff. So, I wouldn't really have the discipline now to do those things. If it wasn't for the fact that I know, when we meet, he's going to make me do it. And he's also set up a hydro program, where I have to get my heart rate up through swimming, etcetera. But these things, I would definitely, I wouldn't discipline myself to do it. So it's only because I show up and see him: I know he's invested in me wanting to do it. I feel as though I should do it, for him more than me now, you know? So it's worked, really.

Nick: All right, do you want to start? Jim, I want you to try to stay on this line the whole time. So if you, you can start where you are, you're going to go tandem walk. So, you're going to go heel-toe, heel-toe - all the way down. As you're walking towards me, I'm going to be passing a footy to ya, all right?

Hamish: Can you explain for me what you're doing specifically, just then? So at the end, there was an exercise where you're getting Jim to step one foot in front of the other, and you're passing him a footy while he was doing that. What's the purpose of that? Why does that work? Or why is that valuable for someone living with dementia?

Nick: Balance is one of the common things that will decline after being diagnosed with dementia and the condition. So that exercise in particular was focusing on Jim's dynamic balance. All right, you go, take a couple steps, get your balance, little pass going in. Back to me. Good man. A couple more steps, smack it all the way down to the bench. Good. I'll get you to turn around there, face the other way. I'll switch. And that's we'll just do a tandem walk. So walking heel to toe along a straight line. And then again, Jim's balance and function is quite good. So I was just progressing that challenge and adding in a footy, and adding a new element to make a little bit more difficult, and test that.

Hamish: Good. Watching it, I'm thinking there's probably quite a lot of people that would really struggle to do that.

Nick: Oh, it's certainly not easy. But yeah, Jim's doing well. And I guess that sort of touches on what I sort of mentioned before, what we can currently do, you just want to be able to do that for as long as you can. And the only way to do that is challenge yourself. That's the only way you can sort of get better and hold on to what you got. And last couple of steps, finish off well. Beautiful: good, good. We'll take that.

Jim: Yes, thanks Nick. A very interesting thing, when I first met Nick as well, he said, he we sat down and he shaped up all this stuff and did a whole analysis on me first, you know, sort of got to know my background, blah, blah, blah, what, what the condition was, and he'd also got notes. But what he said to me, which really resonated with me - and I've often thought about this: "You need to treat this session as medicine. Don't think this is for fun, this is something to do. This is: think of it when you take your medication, this is part of your medication - you need to do it." So that's stuck, really stuck with me, even though I don't want to do certain aspects, I'll do it, because I think of it as taking another pill, you know.

[Music plays.]

So even if I don't exactly love doing it, I'll keep exercising for my body and my brain. Not everyone has to be convinced to exercise though.

Heather: We came from a very sporting family. We all enjoyed our sport very much.

Jim: This is Heather.

Heather: We loved to feel well; our mother was very encouraging for us to eat well and sleep well, and exercise well.

Jim: She's always been very active, ever since she was a young girl.

Heather: So we value our bodies tremendously as a family. And all my grandchildren are very enthusiastic in their various sports and other activities like that.

Jim: Getting diagnosed with Alzheimer's in her mid 70s only strengthened Heather's resolve to stay fit.

Heather: Well, the diagnosis was very much part of how I felt about my body and it not working for me as it should. For example, I'd ridden my bike to school as a child. I'd ridden my bike to university. I'd ridden my bike mostly to work, even though that was a lot of distance. And then I couldn't ride my bike. I couldn't balance on my bike. And I had to put my bike in the shed and wonder why.

Jim: Was that what led to you investigating something's wrong?

Heather: It's an accumulation Jim. I think we all know a little bit to ourselves and not quite going well. And I also noticed as I was doing my little jogging, sort of a disbalance coming up, so that was balance. And vision was a bit of a problem as well. And so I just felt my always-excellent body that it always responded very well to me. Things were not going well.

Jim: So did that lead you to explore a little bit more with medical, the medical field to find out you know, what is happening?

Heather: I think I pretended that nothing was happening. "Oh, I can't balance anymore. Maybe I've got an ear infection. Oh, no, I'll be fine. I'll, I'll manage." And then I had quite an incident. I had to go to the doctor, I think for an injection, or some minor happening. I went into the doctor's surgery and I said to him: "I think I've just driven through a red light." And he said "ohh" and sent me for a scan almost straightaway to a local hospital. That scan sent me for a couple of MRIs. And within 10 days, I had a phone call from the psychiatrist at the main hospital to say that they'd like to see me. And then I got my verdict. I think I spent 12 months in the doldrums. I think I came to grief. The psychiatrist pronounced her verdict. I can still remember that blue file that she was holding and reading from. Physically, I felt as if somebody, a gang had attacked me and bashed me all over the place. And I was just quite ruined. I recovered because my family loved me and gave me lots of sympathy, but immediately reminded me that I had a duty to them, not to burden them and leave them in sorrow with their mother having Alzheimer's. I always, I have a great sense of humour. I was always, you know, laughed and joked through the dramas – that we have, little dramas that we have in our life; cheered the kids on with their cut knees and all that sort of thing. So I couldn't have my family grieving for their mother with Alzheimer's. And that's why I sort of picked up my crumpled little body and held it up and said: "Come on. There must be something you can do."

Jim: What does your day-to-day exercise routine look like now?

Heather: Oh, it's very, very structured. I aim quite high, at something like a half marathon or something like that, so I really structure my exercise around keeping my body really limber. And you're just looking after it in every way. So, not too much running, right, because you know, you can't keep pushing those bits too hard too long. So I do that four times a week. And then the other two days, I do cross-training. And then I have a rest on Monday, yeah. I swim with our community bus only takes us once a week to where there's a pool. So I do I swim a kilometre there. But my swimming - my swimming is not I'm not the best swimmer in the world. And of course, I walk every day. And we've always had lots of dogs. Some have been working dogs, kelpie dogs, and they like about 10k under their belt and the new little pup, she has about three and a half k in the morning and about five in the afternoon.

Jim: Fantastic. They're lucky dogs to have such a good owner that's taking them out. Do you do anything else sort of from a social aspect with your exercise?

Heather: Ooh, certainly. I have line dancing, which is now up to three hours a week.

Jim: Wow.

Heather: I know. It's marvellous.

Jim: That must be fun.

Heather: Well, my teacher only the other day, she said: "You're all facing the wrong way." And she was pointing at them. And they said: "Oh, and Heather is too." And she said to them: "And Heather's got an excuse."

[Line dancing music plays.]

Jim: How do you find with learning the routine and memorising the routine?

Heather: I couldn't memorise the routine. So, she talks it through, the whole dance through. There might be, say 22 repeats of eight moves, eight different moves, and she will talk, for all of us, she will talk those moves through. She will abbreviate them, because all I need is a hint that it's going to be the left foot (or not the right foot).

Jim: Yeah.

Heather: And she would just gently talk that through.

Jim: Repetition, repetition, repetition helps, because the more you repeat it, the more you repeat it, I know with myself, if you if you do it over and over and over, it seems to be a lot easier than something that's new, or you've just learned. Do you find that with your line dancing?

Heather: The repetition, Jim is, you're so correct. And I said to her, I said: "Chris, I love it when I've done 23 of the things. And the 24th one, I get it: all eight steps right and in the right order."

[Applause.]

Jim: Yeah, so you can sort of relax and really throw yourself into it, because you feel so confident then that you know those steps.

Heather: And the confidence, the confidence in the fact that you've got so much brain, that you can use other bits to store this dancing that once you would have, as you said, memorised, but you're not doing it that way anymore. I think you're doing it by a repetition and somehow ingraining yourself in that work. Now, that is why running is so good. And you're feeding your brain with oxygen on this boring, repetitive over and over again. And it's the same with the swimming. I mean, you've got four bits going, and then you've got a breeze as well. Work that out!

Jim: And do you find as well with your running, that doing repetitive routes in a way that, you know, off the back of your hand, inside out, back to front. That makes the running a little bit more relaxing. So you don't have that feeling of perhaps getting a little lost, or feel a bit confused, you know that route so well, that it's sort of ingrained in your memory. Do you feel that way?

Heather: Yes. Very good question, Jim. When I was talking about wondering about my situation with my possible Alzheimer's, we have a very large garden. And even out in that very large garden, if I was bending down doing something, I'd stand up, and I didn't quite know where I was in my own garden. And then, if I was running out in the forest, I would have to be thinking about where I was. If I'm thinking about where I am, then my running, I may trip and fall or some other thing. So you're so right. I have this very regular route. And everybody in our village knows that that's that mad woman.

Jim: That's Heather.

Heather: Who lives there. She's running again. And that's where she runs and I have a bottle of water placed under a gum tree at every four kilometres distance, so I stop and have a drink there. And then I run to the next bottle of water.

Jim: That's so smart to do it that way. So as you have some sort of focus, how far you're getting around the route, and you've also got a little bit of refreshment there to keep you going. Have you got a little bit of an addiction now to marathons, because I believe you've signed up for a marathon this year. Is that right?

Heather: Yes, I think unless you have a goal, you can cheat.

[Music plays.]

Jim: Heather's right. Unless someone else is holding you accountable it's easy to let yourself off the hook and just stop exercising. That's why I personally see my trainer, Nick. So let's go back to the gym with Nick and Hamish.

Nick: All right. Start off, we'll go, keep it nice and simple to start with, we won't have any things to pick up. But I want you to start on this end. Now as you go through, I only want you to step on green and red.

Hamish: So, there's an exercise that you do with Jim, where you lay out plates on the ground with different marks on them that are different colours. And then you give him basically a code to walk through the little field of mats.

Nick: I only want you to step on green, and let's go blue. Green and blue.

Hamish: What's that about?

Nick: Yeah, that's, that's, again, another fun one that I like to use with Jim. So the idea behind it is it's a motor planning challenge for Jim. And to a certain extent, there's also a bit of memory and recall involved in it as well. So what that sort of entails is we'll set up, with sort of, I guess, as you mentioned, different coloured plates moving along the floor for about five metres. And before Jim takes off, I'll give him instructions on what colours he's allowed to stand on. And then again, if you want to sort of make that a little bit trickier and progress things, I'll usually chuck things out on the floor where I'll instruct Jim before he takes off: when you get to the other side, you've got to pick up this, this and this - ignore this one. So yeah, Jim's got to essentially pick a direction where he can go. So he's got to plan it in that sense. And then he's got to execute it. And remember the instructions at the same time. So there's a bit going on for, in that exercise. But again, it's a really good one where you can regress and progress to the individual and how they're going.

Hamish: I suppose this is another way of looking at all of this Nick, which is this is a guy that's been been dealt a tough card, you should have sympathy, he should be wrapped up in cotton wool and should be looked after, doted upon, and he you are flogging him on a bike.

Nick: It's just tough love: it's tough love, it's the best way to go about it. So I think it's, I know, he doesn't like it at the time. But I know it's all out of love. And it's good for him. So I make him do it.

Hamish: And on a more, I suppose, serious kind of personal note, chatting to Jim on the way here, he was talking about, you know, an idea he has in his mind, of his life and his trajectory in life. And, you know, really wanting to see his grandkids grow up and convincing himself actually he can in some way beat this. Are you kind of on board with that project of like giving hope, I suppose?

Nick: I think right from that sort of first initial session I had with Jim, there's - and he was quite aware of that - there's no way you can undo or reverse the condition. But it's all about ensuring that I guess Jim can live the best quality of life and do everything that he wants to do for as long as possible. And, and the way to do that is addressing those, those focus areas mentioned before, so things like balance, things like strength, things like getting your cardio activities, all your cognitive tasks. Those are those are the ways you're going to be able to address that.

[Music plays.]

Jim: Even though I dread it, I get back on that exercise bike because I know staying active will help me enjoy life for longer. Heather's found acceptance of her diagnosis through exercise and it's something she works on every day.

[Music plays.]

Heather: My husband and I went straight into Dementia Australia office when I had the diagnosis. I think it was even on the day. And we went in and we said: "Help!" And they provided us with booklets. We then did a course with them. It was a course as a couple and that was good. Then I saw Lisa every, once a month. She's a counsellor. Lisa said to me: "Heather I've worked with a lot of people." She said: I've worked with a ballet dancer who was very, very, very good in her profession and she'd have to give up. And she found it really good, she would put cards all around her and she wrote 'acceptance' on these cards. And being quite a visual person I like to, you know, I like colour and I like paintings and art and things. I thought: "Yes, right!" So I went home and got large sheets of paper, double-foolscap size. And I wrote very, very big in very thick Texta: 'Acceptance'. And I pinned it up on the kitchen pinboard. I put one in the bathroom, because you go into the bathroom, and you look in the mirror and there's your mother and you go: "What are you doing in there, Mum?" So you need acceptance of how you are, and just how you feel. Where else did I put it? I put it where I, I struggle with a computer terribly, I could no longer type. And now when I do, I type a bit like an orangutan, you know, I look at the keys and that's how I type. So I put 'acceptance' up there, just under the computer screen. So 'acceptance', 'acceptance', all over the house. And more or less hitting yourself over the head with this fact. And once I'd accepted it, I could move on.

Jim: For Heather, exercise is full of rewards, far greater than just the rush of finishing a marathon.

Heather: I went for a run this morning. And I was just trotting along. And as I went, they were beautiful frangipani flowers, scattered on the footpath. Some were white. And then I came upon another large tree and they were pink. And I just enjoyed that so much: the beauty of nature, the perfection of each one of those flowers, all with that touch of yellow in the frangipani, all beautifully-shaped every one quite perfect. All the same, millions of them. It's just a wonderful world. Please go and have a look.

[Music plays.]

Jim: Whether you've always been a long distance runner, like Heather, or you just want to keep up with a gardening routine, you can call the National Dementia Helpline for advice, tailored to your specific diagnosis.

Kristin: Hi, I'm Kristin, I work on the National Dementia Helpline as an advisor, you can give us a call with anything that you're thinking about. And we'll have a chat with you about whatever's on your mind. You might wonder how exercise can help with your dementia. Sure, might make you feel physically stronger, might help if you're worried about falls. But more than that, it can help build your confidence. You can start to meet new people at a shared activity that you like, if you start swimming laps at the local pool. It doesn't have to be difficult. The types of exercise that you do really comes down to you. What sorts of things do you enjoy? What do you love, what makes you smile and feel good and strong and confident? If you've run marathons before that's great, you can keep running. But if what you really love is dogs, walk yourself up to the local dog park, throw a couple of balls for the dogs there. It's really about finding what makes you feel good inside: doing a bit more of that. And if you're the adventurous type, you could try something new, something you've always been interested in. Look in your local council for something that might be going on, like Tai Chi: if you've never tried that, you could give something new a try too. What's really important is finding an exercise that you like to do something that makes you feel good that makes you feel strong and that you enjoy doing. If anything you've heard today has prompted questions or you're interested in knowing more about keeping active with dementia, you can contact the National Dementia Helpline. We're here 24 hours a day every day of the year on 1800 100 500.

Jim: Hold the Moment is a podcast from Dementia Australia is produced by Deadset Studios. You can find more episodes and resources through the Dementia Australia website: dementia.org.au. And don't forget to follow Hold the Moment on your podcast app, so you don't miss an episode. The show is hosted by me, Jim and

Hamish: By me, Hamish . The executive producers are Kellie Riordan and Grace Pashley. The producer is Liam Riordan; sound designed by Sean Holden. A special thanks to the whole team at Dementia Australia, and to all the advocates who shared their stories on this podcast.

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About the episode

You don’t need to become a gym junkie when you’re diagnosed with dementia – but a little physical activity can go a long way. Find out how you can incorporate an exercise routine that includes balance tasks, strength training and memory games.

Bonus episode

Hold the Moment podcast S01E03 bonus: Staying active with dementia

Transcript

[BEGINNING OF RECORDED MATERIAL]

Jim: Before my diagnosis of younger onset Alzheimer's, you'd never catch me in a gym. But now I look forward to each exercise session. I treat it like medicine. It's just something I have to do if I want to live well with dementia. I'm Jim Rogers. And this is Hold the Moment, a podcast from Dementia Australia. It's full of stories about life after diagnosis. We have a whole episode on exercise you can download in your podcast app right now. In it, I head to the gym with my trainer, Nick, and we meet Heather, who loves line dancing, walking her dogs, and even running marathons to stay active. This is our bonus episode on exercise with an advisor from the National Dementia Helpline. So whether you prefer to swim laps, try something new, like yoga, or you just want to keep active in your garden, here's some advice.

Kristin: I'm Kristin, an advisor on the National Dementia Helpline. When you call us you'll speak to someone like me, we're available 24 hours a day, every day of the year. So you might be feeling a bit overwhelmed after a diagnosis of dementia with all the changes that people are suggesting. If you have an exercise routine that you like, you can keep doing that if it feels like it's safe and makes you feel good, go for it. If exercise is something new that you're looking to include in your routine, then you might have to think about how it might fit. Now that doesn't mean you have to start running marathons today. That might mean you park a little further away and walk to the shops. Or maybe you've always wanted to join the community garden so you can go meet some new people and get digging in the dirt. If you're wondering about how physical activity can help with dementia, there are some of the physical health benefits that everybody thinks about with exercise: getting stronger, building up muscles. But there's a number of other things that exercise can help with: things like improving your mood, you'll feel better if you're on the move, it can make you feel more confident in yourself that you're able to do things that maybe you couldn't do before, if you practice them enough. And there's also a social piece. If you're sharing exercise of any kind with other people, you might meet some new friends. And that's also important. It does seem like there's some research that suggests that exercise regularly can help slow the progression, especially if some of the symptoms that you're experiencing are physical, so you can build up strength that reduces the chance of falls and gives you confidence again in moving through the world. The types of exercise that you do really comes down to you. What sorts of things do you enjoy? What do you love, what makes you smile and feel good and strong and confident? If you've run marathons before that's great, you can keep running. But if what you really love is dogs, walk yourself up to the local dog park, throw a couple of balls for the dogs there. It's really about finding what makes you feel good inside; doing a bit more of that. And if you're the adventurous type, you could try something new, something you've always been interested in, look in your local council for something that might be going on, like Tai Chi. If you've never tried that, you could give something new a try too. What's really important is finding an exercise that you like to do, something that makes you feel good, that makes you feel strong and that you enjoy doing.

Jim: If you want to talk more about keeping active with dementia, you can contact the National Dementia Helpline on 1800 100 500 and speak to an advisor, just like Kristin. The helpline is available 24 hours a day, every day of the year. And there's lots more episodes of Hold the Moment in your podcast app right now. So do follow the show, or have a friend or family member help you access each episode.

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