Trevor Crosby was 64 when he was diagnosed with Lewy body disease in 2014. He recently made a speech at the Tweed Access and Inclusion Award Night, focusing on the steps he has taken to live well with dementia. The event celebrates achievements and innovation by individuals, community groups, organisations and businesses that build and promote an accessible and inclusive community for everyone. Below are some extracts from Trevor’s speech.
When I was initially diagnosed with Lewy body disease I had been a very fit, active, contributing member of society. Having Jill, my wife, beside me helped tremendously in handling this news. I became strong enough to ask the hard questions … “How long do I have to live?” and “How many quality years?” The answers didn’t please me, but I now believe it is possible to make changes to your life that can help you live well with this dreadful disease.
I believe what has been crucial for me has been:
Acceptance that something is wrong and seeking support. I found doing Alzheimer’s Australia NSW’s Living with Dementia course to be very beneficial.
Getting a diagnosis. I was fortunate to have obtained an early diagnosis after experiencing cognitive problems, and without an early diagnosis the benefits and quality of life I have since attained would not have been realised to their potential. I strongly recommend that anyone experiencing cognitive issues get them checked out as soon as possible.
Medication I was prescribed by my neurologist has had an enormous impact on me – clearer thinking, better memory retention, better social ability and more.
Positive thinking, which can sometimes be hard. Recognition that tomorrow is as far ahead as we need to be, and today and tomorrow are what it is all about, has been a vital component to my ongoing wellbeing.
Getting on with life and occupying myself fully with activities I enjoy. This means spending time with my family, engaging in cultural experiences, participating in regular sport and exercise activities, and also ongoing dementia advocacy work.
I participate in a wide range of activities including yoga, cricket, sailing, golf, bridge and dementia advocacy.
I have found yoga to be one of the most valuable activities I’ve experienced in my fight against dementia. An hour of yoga at any level can improve your spirit, your inner feeling of peace, your flexibility and fitness. Yoga brings out the best in me, has introduced me to friendly and compassionate instructors who have focused on my wellbeing, and classmates who have provided subtle and sincere support.
At 67 years of age, I am still playing cricket! I have a lifelong passion for the sport and continue to enjoy participating. I recently attended a reunion of my 1970 under 23s comp-winning side, and am the only member still playing.
I also crew weekly on good friend’s 10m yacht. Sailing gives me self-confidence, improves co-ordination and balance and has introduced me to a new circle of friends.
Three times a week, I play a round of golf. While out on the course I feel happy, sharing the camaraderie of fellow golfers. I don’t think about my diagnosis, unless there is a joke to be made about dementia. “Was that a birdy I had there Charlie?” … “No Trevor, you’re at it again playing the dementia card!”
I decided to also exercise my mind whenever possible. So just over two years ago, with the desire to give my brain the opportunity to broaden its reach and have an activity that doesn’t require physical involvement (in case I am less mobile in later years), I began taking Bridge lessons and playing socially, which I have found to be both stimulating and fun. Dementia and bridge … who’d have thought!?
On the scale of activities that have helped revive my quality of life so far, spending time with my family rates number one. They have been able to absorb the bad news and at the same time keep a cheerful façade, which has been an enormous plus. When I think family I think happy and this thought process helps keeps out negative feelings.
Another thing I’m passionate about is bringing dementia to the political agenda. Funding is needed. Acknowledgement that there is a potential dementia health disaster is needed. Change in government policy and budget is needed.
Governments say we don’t have the money, but I liken this situation to a bushfire raging out of control. This would be declared a natural disaster with appropriate funding provided, without question. Dementia is a natural disaster, running unchecked, out of control. Disaster relief funding at appropriate levels needs to be released immediately.
Last month I joined a discussion with Leader of the Opposition Bill Shorten in Sydney about our cause, and I’m pleased to say he was very genuinely blown away by the impact dementia has on the lives of so many Australians. He assured us that he has taken our concerns on board and is keen to make policy change as soon as possible. In his words he told us, “I get it”. I was totally surprised when he gathered myself and fellow Dementia Advocate Phil Hazel, complete with Sarah his companion dog, to hear his expanded dementia platform, demonstrating his understanding of and political will for dementia.
So my message today is that like me YOU CAN BE THE CHANGE by living well and changing the face of dementia in the broader community. You can BRING ABOUT THE CHANGE in government policy by talking to your local member. Dementia will be a very important Federal election issue. And finally, and most importantly, you can MAKE THE CHANGE to find the support you need and the things you enjoy that make your life meaningful and enjoyable.
Dear Trevor, I am Cynthia. I stood next to you in the photo at the awards night. You are wonderful. Derek my husband has mild cognitive impairment now. You made me contemplate and know how fortunate we are. Derek and I are actively involved with several groups. We will continue to do as much as we can to assist people with dementia. Thank you very much
Congratulations on a wonderfully positive recount of your experience with Lewy Body Dementia. I am curious though and hope you don't mind me asking do you also have Parkinsons Disease? My husband has both and sadly does not appear to have your ability for physical pursuits. Well Done you
Great message Trevor. Now you’ve got Bill Shorten’s attention I hope you get a chance to lean on Malcolm Turnbull. Dementia program funding requires a bipartisan approach. Maybe you can get one to outbid the other!