Don’t forget to ask “What’s available, for me and for them?”

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“ROLL THE PUMPKIN” – Having fun at a fundraising Garden Party in the countryside, at Grantham, Qld. Funds raised will be added to “The Mighty Quinn’s Team – Relay for Life”, Qld Cancer Council.

I was exhausted writing that last post!! I think it’s because that’s just a summary of the exercise that I do, and to maintain that, it means a lot of training, ALWAYS with my mates. I imagine that some of you may have been exhausted reading it. Sorry about that.

I’m lucky in that I enjoy most exercise. And I love the socialisation and banter between the group of people that I train with.

But exercise doesn’t have to be what I wrote about. I gave a few other examples at the end of the post and most of those, I don’t do at all well.

I don’t know where you live, but I’m lucky here in Brisbane Australia that we have lovely walking pathways; cycling tracks; bushland trails; beaches not too far away; and, local private and community leisure centres and club sports eg pools, bowls, tennis, yoga, Pilates, etc.

But more importantly our local community groups and local councils also offer activities to help keep us healthy.

For example, the Brisbane City Council has a number of programs with activities that are mainly free or some at a low cost, throughout the suburbs. And although these listed here are just a few of their programs, you might be thinking, ” Really! How does that apply to me.”

Remember that Living Well with Dementia is also about our loved ones and the next generations. To show them that activities, movement and exercise are good for our heart health and therefore good for our brain health is probably one of the best legacies that we can impart to them. Particularly in today’s technologically connected world!!! (Okay I won’t even go there with that subject, but I’m sure you know what I mean.)

Firstly, (I love the name of this program) the ‘GOLD Program…. Growing Older and Living Dangerously!’ – for people over the age of 50.

‘Active and Healthy Lifestyle Program’ – for anyone.

‘RAW Program (Real Adventure Women)’ – for women over the age of 16. They do various things like canoeing, rock climbing etc.

‘Chill Out Program’ for 10-17 year olds.

See what I mean about activities that support those who support us. It can be fun especially with friends; be an opportunity to meet new people; help with stress relief; and of course, for general health.

I’ve also been told that each of Alzheimer’s Australia’s state head offices have a library for borrowing and that there is a copy of a gentle exercise DVD that was made here in Qld, in 2014. It’s called “Fight Alzheimer’s Save Australia Exercise Physiology Program”. It was made in conjunction with Aspire Fitness & Rehabilitation and Queensland Sports Medicine Centre. See if your centre has something similar. You may be able to buy a copy of this one or something else that has gentle exercise.

So it’s not just about what can we do now that we have the diagnosis of Dementia.

Let’s share the message that firstly, don’t wait until you have Dementia before you start making healthy lifestyle choices. Start now to try to reduce the risk factors to maintain your heart and therefore your brain health. That must also help with so many other types of medical conditions that we hear about in the media.

I recently heard in a health report on the news on TV, that it takes as little as 35 minutes of brisk walking daily to reduce the likelihood of developing Dementia.

So start off small, and increase daily. Try something different. Always ensure that you or your loved one is doing the activity safely. Whatever you do, ENJOY it 🙂

Have support around you for motivation and encouragement.

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This is a new experience for me……writing a Blog. And it’s daunting to say the least. I’ll be relying heavily on my partner Glenys (and I think she feels the same way) to remind me to do it; to talk about what it should be about; and to help with the process. This is a HUGE learning curve for both of us, and I have difficulty learning new things!!!

I suppose that a good starting point is for me to tell you about the things that I like. I can sum that up in a few words: exercise, socialising, travelling and spending time with family.

I’m now 63 years old, but I can only say that for a few more days. I was always an active child but life took over and before I knew it, I was in my late thirties when I rediscovered running. Next thing, I was training for marathons. I sometimes trained alone but it seemed to have more purpose and was far more enjoyable when I trained with others. Marathons are tough going and I only did 3, I ‘threw in a triathlon’ along the way, but then started focusing on half marathons (with the ‘pièce de résistance’ being the “Great Wall of China Half Marathon” in 2013, with my running mates) and have also done about 30 charity fun runs (City to Surf, Terry Fox, Bridge to Brisbane, etc)

I found that the best thing to keep me motivated over the years to get up really early (even in the dark of winter) was to do it with friends. On reflection, it’s probably a metaphor for my life now……Have support around you, for motivation and encouragement. I know that isn’t always as easy as it seems for some people, but have a look around you and ask if you can get the support that you need. It made a difference to me then, and it continues today.

The group that I still train with now are a competitive group, but hidden in that, is that they are supportive, as well.

About 5 years ago, they challenged me to start swimming with them, (I must have been overtaking them running 🙂 )  however, I’d always struggled to breath while swimming and avoided it with a passion. They knew this so I think they saw it as an opportunity to show off. But I persevered, took some lessons and mastered it. YES! I became confident in the water and about 3 years ago started water running, with no floatation belt.

I’ve never been much of a walker, however, after my diagnosis, in 2011 Glenys and I walked the Queen Charlotte Walk NZ; the Camino de Santiago, St James’ Way from St Jean Pied de Port in France across the Pyrennes and then across the top of Spain to Santiago de Compostella (825kms); and finished the year walking the Larapinta Trail and continued with a trekking tour of some of Central Australia’s iconic sites alongside my running mates and partners. That’s a lot of kms in one year and maybe as Glenys said, I wanted to move on from where I was in my life to see what I could do. Who knows!?

And then 12 months ago I was a non-cyclist who was confronted with needing to have my driving assessed with an Occupational Therapist and a Driving School Instructor. You can’t know how challenging that was for me! I can still drive short distances with restrictions, but to maintain my independence, Glenys encouraged me to buy a bike so that I could get to my training sessions with my mates.

Before I knew it, I was training for, AND successfully COMPLETED, the Cycle Challenge of a lifetime!!……… A 562 kms fundraiser and awareness ride through Vietnam and Cambodia with Alzheimer’s Australia (Qld) and Aurora Adventures.

I’m fortunate that I enjoy exercise and have support in the way of both Glenys and my mates. But there’s a lot of activities that I can’t do.

What was, or is your passion? Is it singing, playing music, dancing, etc etc. I can’t do them unless you want a good belly laugh! Some in my YOD Support Group (for those with Dementia and their Carers) are members of Men’s Shed doing manual work around their community. Perhaps you enjoy social tennis.

Find what works for you and try to get the support to help you become motivated and be encouraged. Please let me know how you go 🙂

“Life doesn’t stop with a diagnosis of Dementia.”

WELCOME to my blog. I’m writing it because I want others to know that although a diagnosis of Dementia is probably the last thing that you’ll want to hear, sometimes it’s a relief to have a name for what is happening to you. More than that, it’s a time to have a look at what you’ve already been doing, and decide if there may be other things that you still want to have a go at. Set goals; learn something new; socialise; and do things that are positive to your health. You probably won’t always achieve it all. (I don’t, and I take each moment and each day and do the best that I can) But make little changes that work for you. Ask for and accept the help that you’ll need at different times. You still are a person, not just a statistic. I hope that reading my blog gives you the incentive to make a few changes that may make a difference to how you manage your Dementia. Or, if you are a Carer or family member of someone living with Dementia, then maybe you will also find some of my comments of interest. You are not alone.

If you need someone to talk to or information or advice about Dementia, ring Alzheimer’s Australia’s Hotline number: 1800 100 500, or go to: https://fightdementia.org.au

thank you for reading my story 🙂

I didn’t always feel this positive about how my life was unfolding.

I’d seen my mum and two of her sisters deteriorate dramatically with Alzheimer’s Disease and I was fearful of how I might become, and also of what others may think and their reactions to my diagnosis.

I have Younger Onset Dementia (YOD), named simply because I was under the age of 65 years of age at the time of my diagnosis. It’s familial Alzheimer’s Disease (AD), a rare genetic form. Some put the figure to be only about 100 people of the Australian population. For further information, see link:

https://fightdementia.org.au/about-dementia-and-memory-loss/am-i-at-risk/genetics-of-dementia

I had to finish work in 2008 because I couldn’t plan; couldn’t organise myself let alone the workplace; couldn’t solve complex problems, or make difficult decisions. I was diagnosed with YOD in June 2010 at the age of 59. The road to diagnosis was long and at times tough, and I chose for a number of reasons not to share this diagnosis with many people….. only a few close family and friends knew and they were very supportive.

I spent the next 4 years feeling somewhat alone, with little hope. My life was defined in a negative way by my medical condition!!!

However, in June 2014 I went to a fundraising event for Alzheimer’s Australia (Qld) and was surrounded throughout the evening, with positive comments by everyone present. I met Ita Buttrose who was the then National President, and a great advocate for the support and acknowledgement of, the needs of people with Alzheimer’s Disease. She is so inspiring.

I also met Mary Smith from Aurora Adventures for the first time. I was planning to do a cycle charity ride through Vietnam/Cambodia in November 2014, to raise awareness about, and funds for Alzheimer’s Disease. That night, Aurora Adventures announced that they would fully sponsor me in the Cycle Challenge. I was stunned. People who I’d only just met, had a belief in me.

It had been a long time since I’d felt more than ….. “just Dementia.”

For the next 4 days I said to my partner Glenys, “I can do this. I can live well with Dementia.”

And my life has turned around……..