- Hello, my name is Kevin. I am a First Nations advocate with Dementia Australia. These lands in 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 joined 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.
- We are about to pull up at your trainer's house. His name's Nick. - Yes. - Tell me about what you are going to be doing this afternoon. - 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. He's just very conscientious and very interested in trying to help, so, you know, that's supportive.
- What's the hardest bit of the training regime? - I hate the bike. - You dread the bike? - Yes. I hate the bike because, and he knows it, sometimes I try to talk because that's my thing, I can talk. - Do you talk your way out of the training? - 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've missed the bike, Jim, we've been talking."
I'll go, "Oh, really?" And he'll go, "Only joking, get on that bike," you know? I am Jim Rogers, 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 MacDonald. Hi Hamish, how are you? - Good 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? - 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?
- 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, bush walking, - Wow. - Ran 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. - It's something you can share, something you enjoy and remember that you did that with. - 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. - 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 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.
- Alright then, let's go and meet the incredible super Nick, - Let's go. Hey Nick, my friend, how are you? - Good, good. Yourself? - Yeah, all good. Ready for a workout, I always hate meeting with you because I know what's coming. So this is Hamish. - Hey Nick, nice to meet you. - Hey man, how are ya? - Thanks man. All right, about there, 3, 2, 1 bar comes up. Good, in the middle of your chest for me. Yep, we're going to go eight reps, all you, find the middle. Good man. Nice and controlled.
- My name's Nick Hughes, I'm an exercise physiologist. So background wise, I've just come out of two years of private practice work. - Okay. So what sort of people do you sort of deal with? - 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, work cover 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 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. - 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?
- Yeah, absolutely. So, cardio respiratory fitness, and I guess 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, that of how helpful cardio exercises for neuro conditions. - Jim's obviously a really fit, healthy guy. Does he need much help?
Does he need specific tailored exercise? - Yeah, absolutely. So, I know Jim looks a million bucks. - That's what he says anyway. - Yeah, I'll give you that tenner later, Nick. - So typically, a lot of people will 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 balance, planning, memory, all those aspects of cognitive function.
- What stands out to you in that sort of list of stuff that you wouldn't have thought of doing on your own?
- 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, et cetera,
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 is 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. - Alright, do you want to start? Jim, I want you to try to stay on this line the whole time.
- Yep. - So if you, yeah, 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 are walking towards me. I'm going to be passing the footy to you, all right? - Can you explain for me, Nick, what you were doing specifically just then? So at the end, there was an exercise where you were getting Jim to step one foot in front of the other, and you were 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? - 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 coming in, back to me. Good man. Couple more steps, make 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 was just through 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 in a new element to make it a little bit more difficult and test that. - Good, watching it, I'm thinking there's probably quite a lot of people that would really struggle to do that.
- Oh, it's certainly not easy, but yeah, Jim's doing well, and I guess that touches on what I 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 get better and hold onto what you got. - And last couple steps, finish off well, beautiful. Good, good. We'll take that.
- Cheers, thanks Nick. - A very interesting thing when I first met Nick as well, we sat down and he shaped up all this stuff, and did a whole analysis on me first, you know, got to know my background, blah, blah, blah, 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, think of it when you take your medication, this is part of your medication, you need to do it. And so, that 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. 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.
- We came from a very sporting family, we all enjoyed our sport very much. - This is Heather. - We loved to feel well. Our mother was very encouraging for us to eat well, and sleep well, and exercise well. - She's always been very active, ever since she was a young girl. - 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.
- Getting diagnosed with Alzheimer's in her mid-seventies only strengthened Heather's resolve to stay fit - 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.
- Was that what led to you investigating something's wrong? - It's an accumulation, Jim. I think we all know a little bits of ourselves are not quite going well, and I also noticed as I was doing my little jogging, 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 had always responded very well to me, things were not going well.
- So, did that lead you to exploring a little bit more with the medical field to find out what is happening? - 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 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, "Oh," and sent me for a scan almost straight away 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 have a great sense of humour, I was always, laughed and joke through the dramas that we have in our, 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." - What does your day-to-day exercise routine look like now?
- 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 just looking after it in every way, so not too much running, all 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 one day.
I swim, 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 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 3.5K in the morning, and about five in the afternoon.
- 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? - Oh, certainly. I have line dancing, which is now up to three hours a week. - Wow. - I know, it's marvellous! - That must be fun. - 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."
(all laugh) - How do you find with learning the routine and memorising the routine? - I couldn't memorise the routine, so she talks it through the whole dance through. There might be, say, 22 repeats of eight different moves, and she will talk, for all of us, she will talk those moves through, she'll abbreviate them because all I need is a hint, that it's going to be the left foot and not the right foot.
- Yeah. - And she would just gently talk that through - Repetition, repetition, repetition helps, because the more you repeat it, the more you repeat it, I know with myself, 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 learnt. Do you find that with your line dancing?
- The repetition, Jim, is you are so correct, and I said, 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."
- Yeah, so you can sort of relax and really throw yourself into it because you feel so confident then that you know, those steps - 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've, 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 to breathe as well. Work that out!
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?
- Yes, very good question, Jim. When I was talking about wondering about, you know, 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 are so right. I have this very regular route, and everybody in our village knows that there's that mad woman - There's 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.
- That's so smart to do it that way, so as you have some sort of focus how far you are 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? - Yes. I think unless you have a goal, you can cheat. - 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. - Alright. To start off, We will 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.
- 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. - I only want you to step on green, and let's go blue, green and blue. - What's that about?
- Yeah, 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 a recall involved in it as well, so what that sort of entails is we'll set up with 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 it can go, so he is got to plan it in that sense, and then he is got to execute it and remember the instructions at the same time, so there's a bit going on 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.
- You know, I suppose there's another way of looking at all of this, Nick, which is, this is a guy that's been dealt a tough card. He should have sympathy, he should be wrapped up in cotton wool, he should be looked after, doted upon, and here you are, flogging him on a bike. - It's just tough love. It's tough love, it's the best way to go about it. So, no, 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.
- 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?
- I think right from that sort of first initial session I had with Jim, and he was quite aware 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 the way to do that is addressing those focus areas mentioned before. So, things like balance, things like strength, things like getting your cardio activities, all your cognitive tasks.
Those are the ways you're going to be able to address that. - 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. - 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 put cards all around her, and she wrote acceptance on these cards."
And being quite a visual person, 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 fools cap size, and I wrote very, very big and very thick text, "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 struggle with the computer terribly, I could no longer type. And now, when I do, I type (laughs) 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 myself over the head with this fact and once I'd accepted it, I could move on.
- For Heather, exercise is full of rewards, far greater than just the rush of finishing a marathon. - I went for a run this morning and I was just trotting along, and as I went, there 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, everyone quite perfect, all the same, millions of them. It's just a wonderful world, please go and have a look. - Whether you've always been a long distance runner like Heather, or you just want to keep up with your gardening routine, you can call the National Dementia Helpline for advice tailored to your specific diagnosis.
- 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. - Hold the Moment is a podcast from Dementia Australia. It's produced by Deadset Studios. You can find more episodes and resources through the Dementia Australia website, dementia.org au.
Now, 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 Rogers, - And by me, Hamish MacDonald. The executive producers are Kelly Ridden and Grace Pashley. The producer is Liam Ridden, sound design 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.