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.”  

What do you have to say? Comment, share and like below.

Leave a Reply

Your email address will not be published. Required fields are marked *


Sir Sean Connery, dies at 90 after battle with dementia in final years

Sir Sean Connery's widow has reflected on their wonderful life together, and Sir Sean's battle with dementia in later years as film icon dies at 90. Read More

“This will change the way you care for people with dementia”

“A lot of people have this idea of what they think they know what dementia is, and they have this “crazy idea” about what it is because they simply don’t know,” says Professor Steven Sabat. But what’s also important to remember is what dementia is not; Dementia doesn’t take away one’s ability to care about... Read More

Doctors regularly miss dementia in their patients

A UK study has found that in nearly 40% of cases, doctors aren’t aware that patients they are treating have dementia. A study by the University College London found that medical staff are regularly treating patients without realising the patient has previously been diagnosed with dementia. The researchers say elderly people who are living with dementia are being sent... Read More