Oct 19, 2017

Life Before Death with Lewy Body Dementia

Trevor Crosby has Lewy Body dementia. But he wants to show people, that “you can live well with dementia”.

Lewy Body dementia is one of the lesser knows kinds of Dementia, and is also known as DLB.

Abnormal clumps of protein, known as Lewy bodies, develop in the main part of the brain, the cortex, which results in dementia.

Lewy bodies can only be identified by examination of brain tissue after death, so there is no way of testing their presence to confirm a definitive diagnosis.

At Dementia Australia’s “Be the change” Conference, Trevor told his story.

“I was 64 in 2014 when I was initially diagnosed with Lewy Body dementia. I had been a very fit, active contributing member to society,” Trevor said.

“My wife and I ran a farm in rural NSW, along with two other businesses, for more than three decades.”

“I was a long-serving member of a committee that manages water resources in Central NSW, was an active member of my local golf club, serving as President of the club for three years, was a keen supporter of the Primary Club in rural NSW for many years, and much more.”

“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 answer didn’t please me, but I now believe it is possible to make changes to your life that can help you to live well while still living with this dreadful disease.”

Trevor then shared a story of the father of one of his friends, Viv – her father died from complications of Lewy Body Dementia by choking on his food.

“He had not been diagnosed till very late in the progression of his disease and the family were unable to afford the proper choices he and they deserved.”

“Antipsychotics had been administered to him in heavy doses and he spent a good time of his last years bed ridden due to Parkinson’s disease, but Lewy Body dementia, was not mentioned.”

Viv’s dad died in a short period of time – he had not been diagnosed early enough.

“No one knew he had Lewy Bodies till it was too late. If Viv and her father had known earlier something could have been done to improve his quality of life he may not have died so quickly.”

“Viv’s dad and her family were not offered options that might have changed his life and care, I am determined to find options that will change mine.”

“Although things have no doubt changed for the better in 10 years we still have a long way to go. Amongst other suggestions my specialist advised me to consider enrolling in the Living with memory loss program with Alzheimer’s NSW, now Dementia Australia.”

“This suggestion was a worthy one which Jill and I followed but I needed more. I was not going down without a fight and it was clear to me I needed to be proactive in making changes in my life that would improve my situation.”

“Almost every part of my life has changed in three short years of living with a Lewy Body dementia diagnosis mostly for the better.”

“Sure, the early big hit momentarily knocked us for six, however, the 156 weeks of rewarding advocacy work with Dementia Australia along with pleasurable, entertaining activities and importantly having family and friends new and old treat me as if it’s “business as usual” allows me to live a fulfilling, meaningful and enjoyable life.”

What Trevor believes helped him “live well”

“First acceptance, acceptance that something is wrong and seeking support. I found doing Alzheimer’s Australia NSW’s, now Dementia Australia, Living with Dementia course to be very beneficial.”

“Second getting a diagnosis. I was fortunate to have obtained an early diagnosis after experiencing early cognitive problems, and without an early diagnosis the benefits and the quality of life I have since attained would not have been realised to their potential. I strongly recommend that anyone experiencing cognitive issues get it checked out as soon as possible.”

“The medication I was prescribed by my neurologist has helped lead to clearer thinking, better memory retention, better social ability and more”

“Next, positive thinking which can sometimes be hard, but I believe this and recognition that tomorrow is as far ahead as we need to be, today and tomorrow are what it is all about – has also been a vital component to my ongoing wellbeing.”

“Finally, 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 Alzheimer’s advocacy work.”


Trevor’s Active Life

“I participate in a wide range of activities, including yoga, cricket, sailing, golf, bridge and dementia advocacy work.”

“I have found yoga to be one ofthe 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.”

“In the words of my yoga instructor, ‘Trevor has built physical strength and flexibility during this time, but also strength of will and resilience’.”

“‘I know him to be benefiting from the support of the group setting, and the breath and movement practices which anchor the spirit into the body, and calm the mind, allowing him to arrive at acceptance of the changes in his world.”

“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 have signed up for the Primary Club Oldies Cricket Teams – this will be my 59th season, hopefully one where my contribution to the team will continue to be a positive one.”

“I also crew weekly on good friend’s 10m yacht, Sydney Harbour is the backdrop and all six of us on board never cease wondering how lucky we are soaking up the atmosphere that this spectacular harbour exudes.”

“What sailing does for me is it gives me self-confidence, improves co-ordination and balance and introduces me to a new circle of friends.”

“Three times a week, I play 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 and my ability to score correctly.”

“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 rate number one – they have been able to absorb the bad news and at the same time keep a cheerful facade.”

“An enormous plus – when I think family, I think happy and this thought process helps keeps out negative feelings.”

“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 make the change to find the support you need and to do the things you enjoy that make your life meaningful and enjoyable.”

“Let me remind everyone with a quote from Richard Gere ‘none of us are getting out of here alive so live the day as if it was your last’.”

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