Bill, who is HammondCare’s Dementia Centre Living Experience Consultant, was diagnosed with Younger Onset Alzheimer’s Disease in July 2019, at the age of 59.
Later this month, he will be in France for Walking the Talk for Dementia, which is a worldwide initiative aimed at raising awareness about dementia by bringing people together from all walks of life.
“By building connections with each other, we hope to reach a better understanding, where we can unite as one, and show people how you can reduce the stigma that is attached to this devastating condition,” Bill said.
“Starting in 2023, 70 people from all parts of the world were invited to participate in an inaugural 40km, four-day pilgrimage along the Camino de Santiago de Compostela in Spain. Basically, all the participants will walk 10–12 km daily. On the last day, our destination will be walking into the Cathedral of Santiago. This will then be followed by a two-day symposium, where everyone shares their thoughts, ideas and reflections about this immersive experience.
“This year, 80 participants were invited, including people living with dementia, carers, clinicians, researchers, policy makers and advocates from all parts of the world.”
How is Bill training for 10-12km daily walks and how does his diagnosis affect him?
“From a dementia perspective, I need to face challenges associated with my motor coordination, balance and reflex action to be able to run (jog) properly. I also have a pre-history of a ruptured patella tendon in both knees and a ruptured Achilles tendon which adds another layer of difficulty,” he said.
“To achieve this goal, I have created my own Reablement Plan, which involves five steps. Step 3 and 4 involve training under the guidance of a physiotherapist who has created a 12-week training program for me. The focus here is to develop the strength, endurance and fitness that I will need to achieve my goal.”
As a dementia advocate, what are the main three things he says to people associated (family and friends) with someone living with dementia?
Bill is giving a presentation at the International Dementia Conference 2024 at Hilton Sydney for two days from 5 September. The session he is part of is entitled “This is happening to me – lived experience”.
“For me it’s all about changing the narrative that is attached to a diagnosis of Dementia. That is, you can still have a better life – one that you value and has meaning to you,” Bill said.
“I believe this is best answered by quoting three leaves that are part of my Tree of Awakening your Positivity – this is the post diagnostic care and support program that I created.
“Just keep Swimming emphasises the importance of resilience, that is about working hard to achieve the goals that you have set yourself in life and not giving up just because you encounter barriers along your journey.
“Aim for success isn’t about having a career, making money or becoming famous. Rather it’s about getting up each morning and being proud of what you have already achieved and what you are going to achieve in the days to come. Overall, it’s about working towards enjoying a better life as this condition progresses.
“Look for the Silver Lining. Living with dementia has many ups and downs, therefore it’s important to always look for positive aspect in things that are happening around you.”
When did Bill become aware of having early onset dementia? Was it his family that first noticed? How did he react? What has he learned subsequently?
“I was diagnosed with Younger Onset Alzheimer’s Disease in August 2019. As an educator and School Administrator, I first became aware of a range of cognitive issues, especially when I had trouble remembering the names of students that I was teaching. As a senior Physics and Chemistry teacher, I never used a textbook as I had close to a photographic memory. When I couldn’t remember equations that I had used for over 30 years, had trouble performing calculations (without the use of a calculator) and not being able to recall the theories and knowledge anymore, I knew there was something wrong,” he said.
“Having been the primary carer for my father for four years before he died of dementia in 2012, it was relatively easy to understand what was happening to me. Despite this, I still didn’t cope at all well when I was diagnosed nearly five years ago. I say this because the whole concept of being diagnosed with a disease that has no cure and is progressive, left me with no window of hope. How do you fight a disease like this when there is no post diagnostic care and support program to guide you. As a result, I started to feel sorry for myself, I ate and drank too much putting on over 20 kgs. Quite simply I allowed a ‘darkness to surround me’ as I fell into a mental and social abyss. Life now had very little meaning for me.
“Luckily, a group of friends took me to Japan to watch the 2019 Rugby World Cup. Probably, because I laughed so much and really enjoyed myself as I was acting like a 20- year-old, that I decided in the onsens (hot water baths) that I wasn’t going to give up on life without a fight. So, I sat down with my twin brother and we decided that I needed to do two things if I was ever going to have a hope of surviving this disease.
“Firstly, I enrolled in a novel clinical trial which involved receiving a weekly injection of the experimental drug known as XPro 1595. Rather than follow the typical amyloid beta and tau hypothesis, I choose, in perhaps the biggest gamble of my life, to follow the neuro-inflammatory hypothesis as it seemed to explain why I had developed Alzheimer’s Disease at such a younger age. I have now been on this drug for three-and-a-half years. For me, the results are quite encouraging.
“Secondly, I needed to create my own post diagnostic care and support program. As I believed that Alzheimer’s is more than just a cognitive decline as it also takes away your concept of self – that is your self-identity is destroyed. I worked out what actions, strategies and interventions I needed in order rebuild my concept of self – these are grouped under the headings of your body, mind, heart and soul. These form the forty-four ‘leaves of positivity’ that are in my tree.”