How One Man Improved His Positivity After A Diagnosis Of Early Onset Alzheimer’s Dementia
How One Man Improved His Positivity After A Diagnosis Of Early Onset Alzheimer’s Dementia With William Yeates
Have you ever wondered how someone diagnosed with dementia can still live a fulfilling and joyful life?
In this recent episode of Christian Dementia Caregiving, we heard a remarkable story from an individual living with early-onset Alzheimer’s disease.
William Yeates’ (https://www.awakeningyourpositivity.com/) journey is not just about dealing with the diagnosis but about finding ways to live well and maintain a positive outlook. His story offers unique insights that go beyond the typical advice found on most websites.
Bill was diagnosed with early-onset Alzheimer’s at the age of 59. He described the initial impact as devastating, both for himself and his family. He experienced cognitive decline and faced the hard reality of no cure. However, Bill’s story takes a different turn from the usual narrative of despair.
Embracing a New Mindset
Bill emphasizes the importance of finding a passion and engaging in activities that bring joy and laughter. He believes in adapting to one’s abilities and focusing on what makes life enjoyable. This mindset shift helped him navigate the post-diagnosis period with a renewed sense of purpose.
Unique Approaches to Managing Dementia
Bill shared several unconventional strategies that have significantly improved his quality of life:
Swimming in Cold Water: Bill engages in cold water swimming, which he finds refreshing and invigorating. This activity not only boosts his physical health but also his mental well-being.
Massage Therapy: Regular massage sessions stimulate his brain and provide sensory enjoyment, which he finds crucial for maintaining cognitive function.
Community Service: Returning to volunteer work as a surf lifesaver has given Bill a sense of purpose and community. He trains kids and stays active, which keeps him socially engaged and physically fit.
The Tree of Positivity
Bill developed a concept called the “Tree of Positivity.” This tree has four branches representing different aspects of life that he focuses on:
Body: Maintaining a healthy diet, staying active, reducing stress, and limiting alcohol consumption.
Mind: Engaging in brain exercises, setting new goals, and adhering to a daily routine.
Heart: Finding a passion, engaging in community service, and performing acts of kindness.
Soul: Reflecting on one’s identity and maintaining a positive outlook on life.
Setting Goals and Overcoming Challenges
Bill sets challenging goals for himself, such as participating in competitive swimming and lifesaving events. These goals keep him motivated and provide a sense of achievement. His story highlights the importance of perseverance and resilience.
Conclusion
Bill’s journey is a testament to the power of a positive mindset and proactive lifestyle changes in managing dementia. His story encourages caregivers and individuals living with dementia to look beyond the diagnosis and find joy and purpose in everyday life.
Final Thoughts
Living with dementia is undeniably challenging, but stories like Bill’s show that it is possible to find hope and joy. By embracing a positive outlook and engaging in meaningful activities, both caregivers and individuals with dementia can navigate this journey with resilience and grace.
Read More:
Talking About Caregiver Burnout With Michelle Gordon
Check the other podcast: https://dignicarebydesign.com/category/podcast/
Email me: lizette@dignicarebydesign.com
Message me at Instagram: https://www.instagram.com/thinkdifferentdementia/
Listen to the Podcast
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[0:01] It is not often that you meet someone in the online space that truly, truly inspires you. I recently had the opportunity to interview Bill Yates, who lives in Australia and was diagnosed with early-onset Alzheimer’s disease at the age of 59. This interview is a little bit different than the normal format of this particular podcast because I allowed Bill to tell his story without many interruptions so that he would be able to stay on track and express his particular story in his unique voice.
[0:52] I would encourage you, if you are able to actually watch this interview online on YouTube or watch the video in the post because we use a lot of photos of Bill and his life. It is just a very wonderful, sweet story of how Bill is navigating his own dementia diagnosis with grace and with positivity and with tremendous love of living and life. I hope and I know that you will.
[1:42] Experience the same admiration and inspiration from Bill’s story that I have had in watching him over the last couple of years in the online space. So welcome to Christian Dementia Caregiving, the podcast where we teach people to still have hope and find joy in their lives as caregivers or people living with dementia because even though it can be difficult at times, it does not need to ruin your life, and it is actually very simple to navigate if you understand, what to do and how to do it. So without further ado, here is our next episode with Bill Yates.
Meeting Bill Yates
[2:52] Well, welcome to today’s episode. I am extremely excited on so many different levels to have a very special guest. His name is Bill Yates, and he lives in Australia, which creates a lot of time scheduling issues when you are working through international time zones like that. But Bill has a very unique story, and I’ve been following him on social media, primarily on LinkedIn, for probably over two years now. And he has just really inspired me with his journey as a person who is living with dementia. And I reached out and asked him if he’d be willing to come speak to you guys today about his experiences and what he is doing in his life to live well with a dementia process. So Bill, thank you so much, very, very much for being here today. Thank you, Lizette, and hello everyone.
[4:02] My talk today is probably a little bit different in the sense that I’d like to share with you my journey. I will talk about the diagnosis. In August 2019, I was diagnosed with younger-onset Alzheimer’s disease at the age of 59. And I have no problems in saying to anyone, was it tragic? Yes, it was. Was it devastating for me and my family? It was horrendous. It turned my life completely upside down. But that is one side of a narrative which we all hear about dementia. My talk today is probably, I’d like to show you another side. And that really concerns about how to live well, live a better life following post diagnosis. And where I want to share you with the different things that I work with, I’ve created, things that.
[5:02] My idea is not to mimic me, is rather to look at your own experiences, look at your own abilities, look what gets you up in the morning. And I refer to that as a passion. What are you passionate about? And out of all that, look at doing things that you enjoy, that make you laugh, bring you enjoyment. And that’s the part that I would like to really emphasize with everyone. Um is everything i show you it’s been now probably four and a half years since i adopted a completely different mindset and please in some some respect i hope that i inspire you you see something different but it’s something which has taken a long long time um to get to where i am so let’s see how we go.
Understanding the Diagnosis
[5:54] I think the first thing is that it’s probably to understand my diagnosis.
[6:01] Like everyone, I showed a whole range of behavior I’ve shown. I showed a whole range of cognitive decline. And that’s one side of a diagnosis of dementia. The other side you need is the clinical evidence. So initially prior to my diagnosis I had a what they call is a perfusion scan and that basically measures the blood supply to your brain and in my case it showed that it was it was diminished. So it doesn’t actually tell you have Alzheimer’s it actually just indicates it’s a possibility.
[6:41] So I then went and saw a geriatrician, and she was exactly the same way, thinking, yep, you’ve got symptoms, I can do measurements on you, yep, there’s something there. But to be definitive about it, in Australia, this test, which is called an amyloid PET scan, it’s not covered by our health system. So it cost me $2,500, and I paid for that. And what it does is it measures the amyloid beta deposits in your brain.
[7:11] And way back in five years ago that was measured on a scale of zero one two and three three being the highest grade in my case my grading was three so what it actually showed was that in my lateral temporal cortex which is deal it deals with auditory information and encoding memory there was a grade three and the parietal cortex which is involved in receiving and processing impulses from your sensory system i was also very high at the highest grade so what i’m sort of saying is my diagnosis was based on two aspects one you have your the clinical evidence what the geriatrician was observing for my behavior my symptoms and then together with this hard evidence that clearly the two supported by diagnosis but i also like to say it wasn’t my first experience with Alzheimer’s disease and dementia. I’d previously looked after my father for four years before he passed away of dementia. So that’s what I sort of say from the very beginning. I understand the word devastating. I understand the word tragic from that perspective because it’s exactly what how I felt.
[8:30] And I learned that there was no cure. And I suppose that was the hardest thing in my whole life was that where I wanted to fight this disease, everyone was telling me there’s no cure, which I sort of understood. But the worst side of that was that there was no plan. I couldn’t access some post-diagnostic care and support program which would show me how to fight this disease. And I had no doubt my geriatrician was great, fantastic. fantastic she told me look bill you can look look to increasing your exercise you can do brain stimulation you can sleep well reduce the stress but being an ex-science teacher of physics and chemistry and things like that i needed something a lot more structured in my life um that sort of just didn’t work for me but and i sort of say there’s one part i think a lot of people can relate to is that at that time for the next couple of months for me there was a period of darkness and i’d say that was it for me socially i retreated um i ate and i drank too much i put on over 20 kilograms so for me that was the first time ever i was over i think it was 106 kilograms, and basically i felt sorry for myself i thought you know the world was against me.
[9:57] Life had no very little meaning for me i didn’t want to interact i didn’t want to do anything and it’s and it’s an interesting state to be in i think and i think a lot of people experience that or all too different to curse but in my case i was probably a very good example of what you shouldn’t do and luckily for me is that a group of my group of friends who are very close they took me to japan and that was and i went and saw what we what we refer to as the world cup in rugby it was the 2019 world cup rugby oh and this is me and i have you see i have the orange shirt on you can see the guy to my left maybe to your right um with the blue hat he’s He’s my identical twin brother, would you believe? Wow. So he shows no signs or symptoms. So obviously there’s something that happened in my life which triggered this. I’m fully aware of what that was.
Rediscovering Joy and Resilience
[11:02] But I think it was laughing and carrying on like a 20-year-old, I think, for about 10 days. What that meant, I’m not going to go into, but quite simply, I had such a fantastic time. I realized what I was doing, this period of this darkness, I had allowed it to surround me. So I came back with a completely renewed view on life. I’d gone to this tour thinking this is that’s what you guys say the last hurrah i thought this i’m never going to go overseas um this this disease will progress just like my father and four years that’ll be it so to me it sort of all made sense but what it did is it showed me that hey you’ve got to get up you know we all face adversity in our lives we stumble we fall no problem matt what makes the real difference is what my father used to say was that when you stand up it’s what you actually do so what i’m going to share you share with you now is that first concept is that i came back and being in my prior life a pharmacist and my twin brother there was also a pharmacist too twins do twin twins tend to do exactly the same things.
[12:26] We figured out there was two things i had to do firstly i had to enroll in a novel clinical trial, and i’m just going to talk about that now for you now so immune bio is a californian company me um so i have a strong attachment to american lots of ways one of the last hurrah and the story i’m going to tell you now so i decided in probably the biggest gamble of my life, that the amyloid beta and the tau hypothesis was something i wasn’t going to follow i figured in the 20 25 years that they’ve been experimenting there’s been no breakthrough with these two with these drugs and sure enough in more recent times that’s probably not true but in six years ago that’s where it stood so i decided to follow what they call the neuro inflammation hypothesis so i actually viewed my alzheimer’s my my dementia, as an inflammatory response within my brain so the concept behind this drug is to remove the information.
[13:38] And and and that attracted me so i went into it um to this date i’ve been on this drug for over three and a half years so i get a weekly injection into my stomach and it has side effects but at the end of the day the results are encouraging so much so what you’re seeing now is that, in australia we have the australian dementia research forum it’s probably the peak conference in Australia for all clinicians, and I was invited to speak. And one of the things I like doing at conferences is to walk around and look at all the posters. And by chance, this poster gained my attention. So I walked over and I bumped into this lovely lady, Dr. Stabbs, who was sent out from America, from California, to talk about the results of this trial, which was conducted in Australia. So I didn’t say who I was. I just listened to her. And in my trial, it doesn’t receive any credibility because there was 18 of us. And by the time we finished, there were six of us. There were no placebos. It was just a trial to work out the efficacy of it. So I listened to her, and then she pointed to the results. And I looked at her and I said, see that cross there, which you’re going to see right now?
[15:07] See that cross with number three? I said, I think that’s me.
[15:12] And she looked at me and she didn’t quite, what are you talking about? I said, I was on this trial. And that was an interesting story. And I’d love to hear exactly what she’d said. So you can see that it’s called Expro 1595.
[15:29] At the end of it, it was actually six. you can see after three months and then at 12 there was only three of us left and two of us, the ones the last two crosses what this one does um just to explain this one’s got an interesting, graph is that as your brain with dementia as your brain deteriorates the brain gets smaller and what they call the free water space actually increases in size so obviously your brain doesn’t push in well your skull doesn’t push in if the brains get smaller then something’s going to take its place which is what they call the free water so you see the in normal people with alzheimer’s you can see the top line it increases like that and you can see the drug here all right so the two of us were the bottom cross as you can see it was quite it was quite amazing results in this sense.
Lifestyle Changes for Living Well
[16:24] So from my perspective, I had to do, people now talk about a gold, the gold standard for Alzheimer’s treatment and that being a precision medicine, which is what this is. And the other thing is that I also saw that we hear a lot of things these days about risk factors, that you can reduce your risk. The other side of that statement is that for people living with dementia these factors can also slow down the rate or they’re known to slow down the rate at which um that your decline happens and so in my time as being an advocate for a range of organizations i was coming across people who had been you know they declined no doubt about that but after eight or ten years they’re still functioning quite well whereas i’ve met other people who after two three four years that wouldn’t be true so in the discussions with my twin brother we looked at it two ways i needed a drug which is clearly why i went with expo 1595 and i also needed to make a whole range of lifestyle changes and what i’m going to share you share with you now is those lifestyle changes but in sharing this before i do that i’d also like to say one other thing too.
[17:50] Is that everyone associates dementia and alzheimer’s disease with a cognitive decline and i’m totally on the page with that i couldn’t agree with it a hundred but it’s just there it’s true but i found is that what really impacted me on me the most was that my concept of self health was taken away prior to a diagnosis i had dreams i had aspirations i knew who i was my identity was quite crystal i was a very focused person i’d started off being a teacher i was a deputy principal of a private school soon to be a headmaster so it was a very i had a very clear pathway.
Rebuilding Self and Finding Purpose
[18:38] But this drug, when I was given this diagnosis, that was all taken away from me. And I actually found that my concept of soul didn’t exist anymore. I’d mentioned before, life had very little meaning for me.
[18:56] I had no purpose in life. And that, to me, was directly related to my concept of self. So i devised what i call a tree of awakening or positivity where i took what all the clinicians were telling me and the whole concept here is was to rebuild myself in this tree the purple you can see is your heart i saw that i had to rebuild my body my mind my heart and my soul and when i did that i had rebuilt myself in such a way that i could now start leading a better life so if i just look at different things and let’s see how we go is that right so on the right hand side sorry was that any questions no no no um i just i i love this tree.
[19:55] Of positivity and um if you will share oh i have it now so i can put it with the um with the show notes so that people who are just listening can see what it looks like too yeah i think that’s important because it’s hard to imagine what i’m talking about so it’s not that hard i want people to imagine a beautiful tree that has four different sections on the left there’s um a purple and a pink and then a yellow and a green section with leaves.
[20:27] And it just, it brings together the whole, a whole person in four different branches, for lack of a better word.
[20:39] Yeah, and what I might do is just talk about each part. It sounds good. And I like to be able to say that for those who have had a diagnosis that they’re living with dementia, is that your clinicians, your professional people, your same, will be telling you this. And everything they’re saying is on this tree, but I actually think it’s much more than that.
[21:04] So if I do the bottom right, which is the green part, that’s your body so you know you everyone would have said to you like you have to watch what you eat you have to eat healthy no problems with that and whether that be a composite of mine mediterranean diet that’s really important and i sit entirely with that it also means for example limit you limit processed foods that’s like your takeaways so even though i used to work in mcdonald’s as a young kid i love my mcdonald’s i only eat mcdonald’s these days as a special treat i’ll talk about that later so i’ve changed my whole diet um your clinicians would have would have spoken to you about um keep active now the idea is you know you’ve got to keep active that increase the blood supply to the brain it does a whole range of things totally on the page i use the word just keep active because it’s everyone just understands it i’m going to share with you later what i do and i’ve probably taken that keep active to a different level but that’s quite a cap you’ll see things on there reduce stress and you can see that as a risk factor everyone’s talking about that you know to live a stressful life i don’t think it’s particularly good for you living a life which has very little stress probably the way to go um you see.
[22:31] Also on there limit alcohol i’m sort of seeing that all the time now um i have no problems i i love my wine i used to i don’t in the sense now drink anywhere near what i used to i treat it to me a glass of wine or beer is more like a treat and i’ll talk about that.
[22:53] There’s a thing called regular fasting. Bredesen comes up with things like this, and I understand that, where you’re trying to get yourself into what we refer to as ketosis. You want to use up all the glucose in your brain, and for those who are not too sure, the glucose there is really related to your amyloid beta.
[23:16] Just like they’re finding now. If you’re eating a lot of glucose, goes then you’re probably giving the fuel needed to create your anode bgs in your brain um so i work off the principles that i keep my carbohydrates quite low i keep my sugars quite low for that reason um.
[23:35] But you won’t see for example into rock pool swims you won’t no one will be able to tell you that so my tree is created from years of doing experiments worked out what works for me and i read about the swedish that you know the scandinavians what they do so somehow i can’t afford to actually go to those countries so my the easiest way i do is that when it comes winter we’re in.
[24:00] Winter now i’ll put my wetsuit on i’ll go down to the local outdoor pool it’s a rock pool we call it’s in the ocean and i swim and it’s freezing i have no problems with that but it’s very interesting is that after doing a period of time i actually come out really refreshed and for me it’s like sure my head my head is mainly and my legs are in the water the rest of my body is quite warm but the impact it has on me i couldn’t i said wow this is amazing so that’s not true um massage therapy i like the touch it’s all about brain stimulation so what massage is just doing it’s you know it’s making you feel your senses you’re activating your brain i’m really big on that so you can imagine what i’m sort of saying is that when they talk about anloid beta and they talk about tau you’ve got roadblocks in your brain everywhere you’ve got so nervous impulse has to find a new way of getting around to where it needs to go so it takes longer.
[25:08] And to me, it’s all about when you talk about neurogenesis and things like this, the more you activate your brain, you’ve got to build new neuronal pathways. And I’m very big about this. And this is where these type of things will come into it. And I’ll talk about my challenges a little bit later. So if we jump now up to the yellow part.
Body and Community Service
[25:31] The yellow part is about your soul. and this is the things that’s it’s getting close to you who are you you know what what type of person are you um i and that for me is and you see their community service um i remember when i was in that period of darkness i was really concerned you know people weren’t doing things for me i’ve now realized it’s actually i had it the wrong way around what you have to do is do things for other people so um one of those things is i’m a volunteer surfer lifesaver prior to my diagnosis i was a lifesaver the majority of my life i surfed and swam um the beaches where i come from and i gave it up so the after being on the drug trial for about a year i decided to go back so my community service there is my life saving i now train kids in an event called champion lifesaver i’m going to show you show you a video of you me later well why what that means so i try i actually coach kids too so my life has sort of changed around a hell of a lot when when i keep active i walk my dog every day at 5 30 in the morning rain hail.
[26:50] Book or shot it doesn’t matter to me at all that’s what i do i keep to a daily routine, and i do it because where i am i’ve got a walkway i’ve got nature i’ve got beaches i’ve got boots i’ve got people to talk to when so when people talk about that and i’m very big about social interaction social engagement and what it’s doing for you is that you’re engaging your brain you You have to listen to what people say to you or listen to what you’re hearing. You’ve got to interpret it and then you’ve got to usually undertake an action. So for the hour and a half or two hours of me walking my dog, whether it be across the sand, through the nature, talking to people, I’ve got two hours of full-on exercise, but also two hours of brain stimulation. So, I’m very big that one of the things you need to do is not stay at home. It’s actually not healthy for you. You need to be able to communicate. And I’ve said, look, I’ve been doing this for four years. I have no doubt when I first started, I was shy. I wouldn’t talk to people. But if you keep persevering, if you keep trying.
[28:10] Then you get there. And you’ll see just above community service, the thing called Just Flip Swimming. And that’s what that means. It means resilience. It means don’t give up. So whatever you’re doing, keep going with it. And what you have to understand is that with dementia and with Alzheimer’s disease, you’re not going to, it’s going to take a while for you to realise that it’s actually working well for you. It’s not like getting a cold going going to the doctor getting antibiotic within one or two weeks you’re fine that’s not going to happen you have to do this for a long period of time with the understanding the benefits are there you’ve just got to keep doing it and you’ll see therefore self-reflection um i think you have to learn to live with yourself you’ve got to reflect about who you are, man.
[29:04] Now, the only reason I mentioned where I was at, what I was wanting to be is that that was a past life. In my self reflection, I’m happy now that that was a life that I experienced, it’s past, I’m now living a different life, a completely different life. And in my own self reflections, very comfortable with that. I mentioned to you acts of kindness, community service. Service again there’s so much pleasure in doing something for someone it’s quite extraordinary and i would encourage everyone to pick that up acts of cons can be as simple as giving way to a person on a footpath while you’re walking your dog can be anything doesn’t it the smallest thing makes a big difference and when you start feeling good about yourself that degree of positivity My tree is about awakening your positivity. And what I mean by that is that you had a set person, you were a certain type of person before your diagnosis.
[30:11] The diagnosis didn’t destroy that person. You were still the same person. So a lot of the things that I talk about, and probably the closest word I could come up with was awakening it. It got buried under your diagnosis. What you have to do is just bring it back out of you and I think everyone understands that acts of kindness it’s something which is it’s human nature it’s a good thing to do, I’m going to talk a little bit later about setting challenges for yourself. I challenge myself all the time. I set myself goals.
[30:51] And it doesn’t matter to me whether I achieve the goal or not. I might have to break the goal down small to make it a smaller, and I just build on the smaller goals until I finally get there. But in that journey, I’m going to stumble. And that’s why I put it over to the right. It’s okay to stumble. Meaning that if you make a mistake it’s quite okay i’ll like for example i recently went to a footy game a footy game with australia versus wales it’s a it was a rugby union game and i tried to limit my alcohol i’m very clear on it but all my mates were sitting down having beer having a great time i think well why should not so to me it’s okay even though i will say i limit my alcohol I’ll go for weeks, not without having anything, but when I’m out socializing, when I’m out having a good time, it’s actually okay to stumble. You still have to be human and I’m very strong about that.
[31:50] Another one is look for your silver lining and that means that the journey with
Exercising Your Brain
[31:57] dementia is very much like a roller coaster. You have your good days and your bad days. and for me I always try to look for the positive side of something which is negative and so I always have a good outlook on life okay let’s move over to the pink side that’s your brain so here you can see at the top it exercise your brain totally on the page with that and that’s you know how you choose to do it um i do sudokus can’t do crosswords i have no idea how to do that.
[32:36] It’s just you know it could be chess it could be anything i would strongly recommend you to do that, um you’ve got socialize with people i’ve spoken about that um set new goals you’re going to find out from me the goals that i’ve set like probably a little bit over the top but that’s okay um but But that wasn’t always me, it’s just where I’m at at the moment. I’m very strong about a daily routine that you set yourself so you know each day of the week actually what you’re doing. And I have no problems in saying when I upset my daily routine is when I come unstuck and I get stressed. So I’m very careful that I do certain things on these days and I just block it out. It makes my life so much easier. I never used to listen to much music as a kid, as a growing up. Never had time. But it’s probably one of the most enjoyable things I do at the moment. So I think music is amazing. Not only does it bring out the endorphins, but it exercises your brain. So I think it’s very big.
[33:44] I’m going to talk about when I go swimming, I do now two kilometres at least. Not every day but every second or third day i will swing two kilometers and why i mentioned that magical number is that chocolate is actually off my diet love chocolate but it has too much glucose in it for me very strong amount however i do have a block of turbolone in my fridge chocolate which is broken up into triangles i’m allowed my goal and what i restrict myself for example, is that I can have one block I break off if I swim two kilometres. If I don’t swim two kilometres, then I get my block of chocolate, or don’t get my small piece of chocolate. So I reward myself all the time. So when I set my goals, there are little areas of encouragement always with me. It works well. It allows me to keep doing it. Um so i talk about challenge i’m going to talk about that minute i’m going to talk i might quickly show you now a thing called neurocognitive exercises and i’m going to show you the important role this is a video i’ll go for about a couple minutes see how you go.
Neurocognitive Training Program
[35:04] Bill approached me early on in his diagnosis and he had a very obvious cognitive impairment, but he had enough ability to get his ideas across and the main thing he was trying to tell me was that he had a plan to return to competitive swimming. So in order to help Bill achieve his goal of returning to swimming we designed a neurocognitive training program which focused on three key areas. This was on balance, coordination and reflex action. I’ve been working with Bill for the past 18 months. Initially it was for a shoulder injury but has now transferred to assisting him in being able to compete in the competitive life saving safely and effectively.
[35:44] Due to Bill’s diagnosis of early onset Alzheimer’s disease he has impairments including a decrease in balance, coordination, mobility and also a decrease in confidence when mobilizing and in particular when running this is by the same huge disadvantage when competing as all events have a running component working with bill we have formulated a program to address all of these issues so car phrases have been a big component of bill’s program trying to help with his one building his confidence in his task and his achilles after his history of achilles rupture so here we have bill doing some squats to help build up his quadriceps hamstrings and glute so here we have some jefferson curls so these are really important in building up bill’s hamstring flexibility and also his hamstring strength along with his glutes and lumbar spine towards the end stages of bill’s rehab program we incorporate pogos a plyometric exercise to help bill with more dynamic movements.
[36:49] Movements so the reason i was showing you that is that i’m going to talk about it later but, this is the part which i first started probably three three and a half years ago doing these neurocognitive exercises and that’s it’s only a very very small thing um to show you it’s much more complicated than that but you’re seeing me towards the end of it and what i found i needed to improve my reflex actions you’re going to see in a minute my coordination and my balance so the first things that first three things are targeted.
Neurocognitive Exercises and Coaching Opportunity
[37:25] I’ve started a new segment once a month. I’m inviting people into an opportunity that if you are open to or looking for a free one-on-one coaching experience where you sign up and you come on and we coach through one specific problem that you have, I’d love to invite you to reach out to me. I’m calling them a flight audit, a dementia flight audit. And next month is the first month I actually want to invite somebody from the community to sign up and be willing to be coached through a particular problem.
[38:13] We’ll come up with a goal for our time together, and we will come up with a solution for your specific problem. So if you are open to being on the podcast, if you want some free coaching so that you can see so that we can get you your own audit of your own situation, then please reach out to me via email at Lizette at thinkdifferentdementia.com. And I will schedule you for a one-on-one and we can audit your particular situation and you can get real-time help. So that’s an open invitation for you to sign up.
[38:58] Email me at lizette at thinkdifferentdementia.com.
Importance of Role Models and Finding Passion
[39:07] By doing these exercises it’s now allowed me to become much more active in life and i will refer to that in about a couple of minutes time you’ll see what i mean and basically it takes up for me up to a year i’ve got to start this to do a certain activity but i will get there all right um that’s probably but all on that part of the tree i come down now i’m into the heart part, and this is the importance of role models it’s your family it’s your relatives how it’s you know it’s in your heart these are people who are looking for caring for you um it’s about, finding a passion what’s going to get you up in the morning and i’m very very keen about that and i have a passion now who would get up at 5 30 in the morning why am i doing it well i have to understand that i want to beat this disease to do that i’ve got to have a passion i’ve got to be able to push myself to limits um and again i said to you what i do what i’m going to show you now, isn’t for everyone the idea is not to mimic me the idea is to look at yourself look at your own experiences, your own abilities, and see what you can work out.
[40:32] Have you got a passion? Are you sort of just accepting this disease for what it is? Then I would say to you, change that. Change that mindset. You can enjoy a better life. So let’s have a look at my attempts and see how we go.
[40:49] So from being in the trial, the first part of it, for about 15 months, I decided to go back to being the surf fly sailor. And it was interesting.
[41:02] The knowledge part didn’t actually present a problem for me. It was actually the physical part.
[41:09] And that involves a run and a swim. And I found that my ability to run was just really compromised. Was and that’s why you’ll see there’s a focus on me starting to be able to run but the real one what got me was that in australia i think probably in america too it would be the same we talk about a run swim run the swim is a 200 meter swim out through the waves you’ve got to go around the boy and you’ve got to come back and you’ve got to do all of it in eight minutes now as a lifesaver who’s been a lifesaver since i was 21 that was easy i did with my ice gloves post diagnosis i had a huge problem um basically you can imagine doing freestyle the simplicity of it is that you’re moving your arms while you’re kicking your legs and you’ve got to breathe you’ve got to coordinate and you’ve got to synchronize everything when you’ve got those roadblocks in your brain you know what you want to do you just can’t do it as well then you’ve got the added dimension is that you’ve got to now swim through the waves which are crashing on you and you’ve got to come when i i was lucky i told two guys who were swimming out with me that i had dementia and it was interesting i love this story is that one of them he was repeating it that day because he’d failed it the week before.
[42:34] And his comment to me was, Bill, I’ll show you the.
[42:39] Knowing full well that he was putting at risk he was going to fail again i thought that was an amazing uh amazing decision so anyway um so they swam with me and when you when you’re swimming out there with dementia your proprioception is exceptionally poor you’ve got nothing to um guide you there are no lanes when you’re swimming in a pool you’ve got a black line there were no markers so you find you actually find that you actually don’t know where you are and i was worried that if i didn’t learn how to swim again and i passed this thing as a surfly saver if i had to rescue a person they’d be actually rescuing two people not one so it was pretty important so uh and at the ending the story was nice i swam with them they were my markers because this time I ran the buoy and we made the beach and we did the run and I made it within eight minutes. In result, I qualified to be a volunteer surf life saver.
Qualifying as a Volunteer Surf Life Saver
[43:43] But it left me in this amazing quandary. That’s what I talked about.
[43:48] I passed, but I didn’t pass, meaning that if I had to rescue someone, I couldn’t do it. So either i had to give it up or what i did was i went back i found an organization called master swimming ring and master swimming which i’m going to show you now and i learned how to swim again believe it or not the lady to my left you see that old lady there yes i can call her old and And for this reason, she’s 96 years of age. She’s a world champion.
[44:24] She’s also my first swimming coach. It was just an amazing coincidence. I turn up to an organization called Ring of Masters, and there’s my original swimming coach. So what did it do for me? Role models is on my tree for a particular reason. If she can swim, I can swim.
Competing in Master Swimming and Surf Life Saving
[44:48] So to me, it was really important. Okay. So I compete in master swimming. I do it at a branch, state, and international level now. So three and a half years down the track, I don’t always come last. That’s fine. It’s not the issue. The fact is I’m able to do it is the most important thing. And I use it as a good way of just simply saying that everything’s achievable. I’ll show you something else. So not only do I do master swinging I also do masters surf light saving so I have for you this kind of a video I’m going to show you another quick video, now this is an event called.
[45:40] This is the champion lifesaver it’s an event which is for over 50s i’m 64 years of age i do come last in this i’ve no problems at all in doing that but in coming last have a little expression on my face i think it’s it’s priceless in the sense that i’m a person most important relief to me my tree is just keeps me and i use that all the time as a statement to everyone is that it’s about you it’s about you doing the things best to your ability you know if you’ve got a competitive streak it’s okay it doesn’t mean anything what means most to me is that i’m able to do things that other people do too i can dream i can work towards achieving my goals um another Another part of Master Surfly Saving is paddling a board, and I’ll show you that. Okay, so this board, as you probably can see, is probably close to 10 foot, and that’s called a racing mount. It’s what you use to save a person. So I can pick using that, and what’s interesting is that it’s actually good for me for the person with dementia, meaning that if you’re swimming, you’re by yourself, you’ve got no aid I’ve actually all I have to do is learn how to paddle I’ve got a board that keeps me afloat.
[47:06] So that one’s pretty amazing that’s all sort of makes sense so much so I didn’t put the slide in today because I wasn’t too sure how many but I’ve competed globally state state, Australian, and international. In 2022, I travelled to Italy, and I competed in the life-saving championships there, and something I’m really proud of. There were 20 in the race. I came 10th. So what happened there was the fact
Learning to Live a Better Life through Challenges
[47:40] there was still water, so it was just me paddling, and that was something achievable within myself. Myself so that’s that to me is an important thing um and lastly because we there’s another shot there about a board um this one this is my wetsuit i i paddle my board on the lake um, summer and winter and that’s also the same wetsuit but i guess in the way in the winter so it all sort of comes around so you sort of see what i’m in um and the expression on my face probably says a lot that for the very first time in my life i’m actually smiling a lot my body hurts trust me it hurts you know it’s painful however what am i gaining out of it i believe that i’m gaining.
[48:34] I’m learning how to live a better life. I think that’s probably my takeaway. By challenging myself, step out of your comfort zone and start doing things that you probably thought about. As a youngster, I always thought about competing. Never did, actually. The first time I competed was with Alzheimer’s disease. And people are really, once they know, they are really, really good to you. It’s amazing. I used to think it wouldn’t be like that, that people would be critical and things like that. But no, people are amazing. There’s another shot I do. It’s a classic. You’ve got to imagine it. Let’s see if we can go well with imagining. I compete in another thing called pool rescue. That’s in a pool. I can’t, when you swim, I can’t stand up on a block. I can, but someone’s got to hold me. And I usually don’t like doing that. So I just sort of stand on the edge, and when the gun goes off, I dive in. So in the Australian Championships, I’m doing this race, and everyone’s on the block. And the starter goes on your mark, gets set, and I fall in.
[49:55] And from an Australian, if it’s an Australian competition, that means you are immediately disqualified.
Overcoming Challenges and Breaking Stigma
[50:02] Which is fine um so i just had to swim out of my lane and the lady there who was the official looked at me and said i’m sorry sir i have to dq you um you broke the start and i said yeah i know i looked and i said do you ever give a second chance to a person who’s living with dementia, and she looked at me i think she’s probably heard every possible excuse i was made probably Probably. And she looked at me and said, yes, I do. So she gave me another chance. I thought that was extraordinary in an Australian fire. But these are things that there are, I think, as we try to break down the stigma associated with Alzheimer’s disease. It is a tough task. However, there are things that you can do. And people are so receptive, as long as you’re up front with them.
[51:01] All right um i have one last thing to share with you it’s just and probably getting close to the end um my tree doesn’t allow me to compete in master swimming surfly saving um in the sense that gives me the focus my tree sits on my wall so i look at my tree every day so in those days when then I’m having a tough, then I’ll look at my training. Yep, I am unconvinced myself. I am doing the best I can to fight this disease. And I think that’s one of the big factors associated with the training. But I found that I also had to create what is called a re-abignment plan.
[51:46] Meaning if I’m going to set these rather extraordinary goals for myself, I just can’t just go and do it. So i created this the steps towards creating a re-advent plan this is the plan that i use, to achieve the goals that i’ve set the goal i have at the moment is that there’s a walk that’s called walking the talk with dementia it’s a 40 kilometer walk in spain at the end of august, and I’ve put my hand up to do that. So I’m going to go over to Spain on the 22nd of August and I’m going to walk with 80 people in a way of, it’s a world-recognized thing, it’s quite an amazing thing.
[52:35] To raise awareness about dementia and to reduce the stigma that people living with dementia are still capable of living a better life. The goal i set myself is i’m going to run it so i to do that it’s not going to you know i just don’t think of things in the morning so i’m going to do this um i’ve set myself a 12-week program to do this is to run again to run to be able to run this so that involves the first step is a person-centered assessment where i do it where i get an occupational therapist or someone to actually do an assessment of me and say okay is this what is this goal achievable instead of smart goal um specific measurable achievable relevant and timely so i look at my goal and see whether i’ve set myself i’d build my plan so dan for example is my physio has created a plan for me and that involves first the first three or four weeks was just actually trying to start building up my muscles and then after the fifth week we then start running and at the moment i run for um i run 1.2 kilometers stop one minute run another 1.2 kilometers stop rest for a minute and then run 600 metres.
[54:05] So eventually that gets to me just under three kilometres. I’ve got to get to 10 and I’ll do that hopefully over the next six weeks is that I’ll slowly build myself up and my fitness and my strength to actually achieve that. So everything’s programmed for me. So when I do these type of things,
Building a Re-Alignment Plan and Setting Goals
[54:23] you’ve got to look at your risk factors. You’ve got to make sure you’ve got a plan, make sure it’s achievable. you’ve got to work with what we’ve referred to as allied health professionals to help you on that track okay question time how’s that oh i have i have a hundred thousand questions but what i find the most fascinating is that, what you’ve described your tree your you know you’re awakening your positivity, everybody benefits from it you don’t need to have dementia to it’s a healthy way of living period, it’s it it just reminds me so much of.
[55:22] How holistic, how, how we are created and how we’re supposed to be. And it’s just a very normal, healthy way that people for centuries and decades have lived, but we’ve walked away from it to a large extent in the modern world. Right. Um, so I just, I, I absolutely salute you for what you’ve done. I think it is so inspiring.
[55:57] My biggest thing is really working as much in my space as I can to change the stigma of cognitive loss for as many people as we can. Because there’s no shame in having this condition, and there but for the grace of God, you know, could go anybody. It doesn’t really, it can happen to anyone. And so I just, I find there’s so many components to your story that just is so fascinating and inspiring. I did not know that you’re one of an identical twin. There’s a lot of research studies that have been done on identical twins where one has dementia and the other doesn’t. And so it’s just, I’m just so grateful to have heard your story because it gives me, I work with, um.
[57:04] I primarily work with the caregivers, but I do support a couple of people that are living with dementia themselves. And then I support my parents who both have cognitive impairment. And I wish that my dad would be willing to do something like this, but he’s not. And and I know how much effort goes into just healthy living when there’s nothing wrong with you, right? So I just thank you so much. I’m going to come up with all of the questions tomorrow, and for anybody who knows me, it’s really hard to have me pretty speechless.
Moving on from Darkness and Embracing Life
[57:56] Oh, thank you for that. But just picking up a couple of points, what you’re saying is, yeah, I sort of see it too. I think I came to it or came to the decision that I couldn’t accept that there’s no way you can’t fight this disease. I understood why it’s incurable, why it’s progressive. Aggressive and to me i’ve met enough people to convince me that some people seem to be able to slow it down the idea of the tree is there’s no cure with this i’m like 100 on the page that, in my case i’m lucky because the drug has given me a chance and the tree is just adding to it And how I see it is that it’s a way of enduring your life for a longer period of time. And I think that’s the most important thing. Until a cure comes along.
[59:00] You can actually do something to show yourself and show your family and your friends your relatives that you are fighting this disease to the best of your ability and i think that’s the most important thing and when i reflect back in straight off my diagnosis i’d i i had accepted defeat already and i think that’s the wrong concept and i didn’t know i went through and And it lasted for a period of time, and now I’ve sort of realized that the best thing to do, and it’s why I do the advocate for this, is to say to people, is that, yeah, you can do things. The little things that you can do can make a difference. It can make a tremendous difference. Bill, have you met a lot of other people living with dementia in your advocacy work?
Speaking at International Conferences and Personal Achievements
[59:53] I have. I recently just came back from Poland. I get asked to actually talk at international conferences about my journey now. That’s what I share. I’ve been to London, not been to Taipei.
[1:00:08] I’m going to Italy, and I do all the national ones, all the ones in Australia. And I’m either talking about my journey or I talk about my journey or I talk about, like, say, last year. I didn’t put on this slide. Um last year my goal last year was to do my first ocean water swim so i trained for nine months to do that so i made a film out of it and just to show people how i went about it what part of my tree was how it worked um created an array of my plan um dan wrote thing for me and put it all in operation and it was about the social aspects to it and all that type of thing so, um that was important so i tried to like wherever i can um, set goals for myself um also last year i actually came out of san francisco my son is living there and we went to the yosemite center is it correct to say yosemite mountains um i don’t live in california so we went hiking we went hiking you went hiking in yosemite right yeah you said yeah i didn’t pronounce it correctly yeah but that’s okay i i just took a fat chance, yeah and for me it was it was great stepping out of my comfort zone set yourself goals it was great a great experience to um with.
[1:01:35] My son and his partner and nick my wife came to the four of us it was a fantastic experience um what’s big difference between either sitting home and say no i can’t do it or i’ll.
[1:01:48] Give it a shot see how i go and it didn’t matter um that we can keep part with everyone that was fine and the fact that i did it was the most important thing and that’s the those are the competition part you get a part of it’s it’s actually okay to finish it it’s the most important thing and absolutely you should achieve your goal and that’s the part that i like i like the fact that it also it doesn’t just apply as you said it doesn’t just apply to people with living with dementia um there are.
[1:02:18] Many aspects of life especially with risk factors now this big big part for it to play the question was have you met lots of people with dementia i have sorry so i was on this track of questions too um james was just reminding yeah i have i met lots of people um with um dementia and when i do meet them um i we share our stories and there’s always a part of me um to show them how to go one step further people know they’re actually quite on the page i just haven’t formalized exactly what i’ve done but yeah it’s always an interesting discussion um and yeah and i think what gives me the greatest pleasure is to be able to help people with who are living with dementia and show them there’s a better way to do things and that’s why i ensure so answers yesterday because and the reason i asked the question is because in my experience a lot of people living with dementia um.
[1:03:29] I’ve never met anybody who has really, on their own, put in the work to develop out a system and a process and a plan for themselves to maintain and improve both their physical body and their thinking processes. And so I guess I’m trying to figure out, do you feel like most people just give up because of the stigma that everybody says there’s nothing that can be done, so they just don’t do anything? Or do you feel like what some people experience, they get into that dark space like you did at the beginning but they’re not able to come out of it again.
[1:04:29] The dark space is really is really common and that’s probably why i talk about my experience in japan to say that that experience allowed me to walk away from that darkness whereas a lot of people would spend much longer sadly to say they’ve become quite depressed um And it’s difficult. So that’s always an important part of what I say in terms of that darkness. Yes, I’ve experienced, I know exactly what you’re talking about.
[1:05:05] But you have to be able to let go, and that’s one of my leads, is to let go of that and move on with your life.
[1:05:12] Except that there’s no cure for this disease, except it’s progressive. But what you need to understand is that you still have a life to live. Being able to get that part across, I think, is important. Courtney. A lot of people are proactive, do meet them, but they haven’t formalized it like now. I suppose I’m lucky that being a pharmacist, I wasn’t really just a teacher. I was an administrator. I’m a teacher of physics and chemistry. So my brain is wired differently. And that’s why I mentioned that my brain didn’t work this way. As a person, I had a photographic memory. So I can do things which was quite extraordinary. So that’s the way my brain worked. So creating a tree like this was just part of passing on of a past life. It’s nothing, I don’t actually consider it anything special. It’s just something that I used to do, it’s a remnant of my life previously. So I’m actually lucky, I’m blessed to be able to have had that experience. If I hadn’t, I couldn’t have created this. The rate of my claim was simple that was just logic to say okay you can’t just go from there to there you need steps, what are the steps I need to do.
[1:06:37] So I’ll take your comment on that, but I think, again, where I say I created it, there’s part of it, I’m working with my twin brother a hell of a lot. We have a very close relationship, so there’s a lot of guidance there. He found the trial for me to go on.
[1:07:00] There’s a lot of discussions there, I suppose. That’s probably why I sort of looked at it. I talk about me all the time. It should be a team. There’s a team there that’s working with me. I might have the idea, but there’s a team of folks. That’s wonderful. We need to look towards that. I’m sure I’ll do that. So if people wanted to connect with you, how do they connect with you?
[1:07:28] Probably it is this way. You can go onto my website, which is down there, awakening or positivity read more about this um you can make contact with me um and i’m happy to answer questions i’m james here monitors it all the time for them um you can follow me probably the best way would be to follow me on linkedin um just like we mentioned before um is that that you you heard about me on linkedin you can follow what i’m doing all the time on there you can keep up to date i haven’t um i do have to spend a lot more time on my website it has not quite updated for about a year or so so there’s work to be done on that but at least you can see, what i’m doing um and if you um if if you could tell families or the family support people family caregivers right i it’s not a great word because you’re just you know a family member but what would you tell them that you wish that they would know, about living with dementia that could maybe make their lives easier?
Rebuilding Life Post-Diagnosis and Overcoming Stigma
[1:08:47] I think a lot of people with dementia just hear that same story. You get a diagnosis, well, just go home, get your fears in order. And come back in six months’ time and I’ll just see how you’re going. And that has huge, I believe it happened to me too, and it has huge ramifications on how you deal with this. So the message from my perspective is, yes, do I accept that the diagnosis has been tragic, has been devastating, totally on the page. Absolutely totally.
[1:09:28] But the important thing is that you have to move ahead with your life your family needs to move ahead with their lives you are surrounded with people who love you who care for you, but there is a thing that you can do not not to sort of sit there in your own self-pity or sorry for you um i did it did it get me anywhere no just made me made me made me a burden for everyone So what I would strongly advise or ask you to think about, that in your diagnosis there will be a period of time, where that will be true. The important thing is to come to an understanding, accept your diagnosis, realise that your life as you know it, yes, it has gone, what you have to do is to rebuild a new life. Take the parts of your previous life that you want to keep, you might go self-life saving and things like that.
[1:10:32] Think about what gives you passion what gets you up in the morning and start developing new life rebuild yourself that you know my idea or my belief in destroys your whole self-concept I think that’s fairly true what you’ve got to do is that understand the person who you were is still there that still exists is just the diagnosis has changed a perception and what you’ve got to do is just re-establish yourself.
[1:11:03] Creating new life that you’re proud of and your family acknowledges that you’re you’re trying to do the best to bring you to fight this disease and i think that’s an important thing and you you know that when you’re getting there so when you’re starting to smile and you’re starting to a lot of feeling from my perspective and you saw that on on you know a lot of the pictures that i was showing you that i’m smiling i might have just paddled two or three kilometers in my arms and they just feel like they’re gonna fall off but that’s okay i mean there’s an enjoyment factor there and the fact that i do it all the time there’s a passion into it and i undo it because course I wanted to, I’m making that decision. My mum’s forcing me to do this. And I think there’s a strong belief that yes, there is a stigma attached to it. Yes, the community needs to be made aware of, none of the fact that.
[1:12:03] It’s devastating and tragic. I think a lot of people understand that. It’s more so that you still have a life that you can contribute, that society needs to be able to work with you, give you opportunities so you can enjoy a life post-diagnosis. I think that’s probably my takeaway message for everyone. Thank you so very, very much, Bill. I really appreciate your time today. day. I am so glad we were able to coordinate the time zones because Australia is always hard for me to coordinate because I’m not a night person and I’m not an early morning person. And people, you know, that’s hard. It’s hard. The 14 hours is a hard time zone. But I really, really appreciate your time. I really appreciate your support person being here helping you today. I know he’s not on center stage but he he’s been our tech help so thank you very much um to him as well can we move it over to him sorry he gets oh i’m very sure he doesn’t want that he’s hiding there you go thank you so much for joining you’re welcome that’s all right awesome.
