Sep 14, 2017

Suzy’s Story: “Dementia will not define me. I’m still the same person I was before my diagnosis”

When first being diagnosed with dementia, many people – as well as their loved ones – talk about the initial shock and fear they feel.

Fear that their whole life is going to change around them, and that they will be isolated in this condition.

That is why the theme of today’s Alzheimer’s Australia’s event was “You are not alone”, as a reminder to all those affected by dementia that there is a community of people who are in a similar position as them, and that they are supporting them.

Speaking at the event was Suzanne O’Sullivan, a proud mum of two who was diagnosed with frontotemporal dementia in 2016.

Though nervous, Suzanne said that looking out into the crowd “supports the feeling that I’m not alone in this fight”

“I’m so proud and honoured to be representing all Victorians living with dementia at this dementia awareness lecture”.

“I’m just one of the estimated 104,000 Victorians living with a form of dementia.”

“But with the support and encouragement from the ones I love, changes in lifestyle and using services available to me, I can continue to live the best life that I can”

Suzanne has a form of dementia where the left side of her brain is slowly deteriorating, and there is no treatment available. The average length of progression is 5-7 years.

However, like so many types of dementia, this timeframe can vary from person to person.

Suzanne’s dementia leads to issues with language, where she can finds it challenging to follow languages, trouble planning, difficulties in multitasking and on some days struggles with severe fatigue.

“It took over two years for my initial visit to a GP after noticing that I was mixing up or forgetting words”.

Eventually Suzanne was diagnosed during her time with the Memory Clinic at Barwon Health.

“Those two years were an incredibly difficult time. I felt inadequate doing my job, I sometimes felt embarrassed – which I now know I shouldn’t have been – but more than anything, I was confused as I couldn’t find an answer for what was happening.”

“As much as the actual diagnosis was a shock, I also feel a relief to finally have an answer – and I’m not alone in finding that a diagnosis of dementia can be, for some, a very complex and lengthy process.”

There were some challenges through her experienced, “some friends, even still, find it difficult to accept my diagnosis as I don’t fit into their stigmatised image of someone with dementia. But then they’re not living with my muddled brain everyday”.

But Suzanne has a lot of support from her two children, “we’ve always shared the highs and lows in life with honesty, with tears, and with laughter. And we continue to do so”.

“They are an amazing support to me, and they encourage me to speak out whenever I have the opportunity”.

“Dementia can happen to anyone at any age. We must bring awareness, it is so important that people understand that the stigma associated with dementia must be changed.”

“Yes, I have a degenerative cognitive disease that without a cure is terminal”  

“But dementia will not define me. I’m still the same person I was before my diagnosis, and the time since has shown me what is important – spending more time with my family, traveling when possible, and I love my garden”.

“Dementia advocacy is my passion. It gives meaning to my diagnosis.”

“I know this will eventually take my language, my memories, my time with those I love and those who love me, and for me my biggest fear, it will take my dignity.”

“But I’m not and never will be a dementia sufferer. I’m just someone living with dementia day by day.”  

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