Scott's story
In 2018, Scott began to notice changes in his ability to communicate. Once a vibrant and outgoing individual, he found himself struggling to remember names and navigate conversations.
I used to be quite good at remembering names and with language, but soon after my retirement, I was getting confused, struggling to understand conversations, and frequently grappling for words.
Frustrated and concerned, Scott sought medical help, ultimately finding his way to the FRONTIER Research Group at the Brain and Mind Centre. A battery of tests led to his diagnosis of primary progressive aphasia (PPA), a rare form of dementia primarily affecting language skills. “I was only 62 years old when I received this news. It was a hard pill to swallow.”
Over time, Scott's challenges extended beyond language impairment. He also faces difficulties in problem-solving, and short-term memory, and has begun experiencing motor coordination issues.
As his condition progressed, Scott became increasingly reliant on his wife, Jill, and others for tasks he once managed independently. He emphasises the importance of support from loved ones, saying, "I rely on people to subtly pick up my mistakes without doing them for me, and I think that's important."
Despite the challenges, Scott maintains a positive outlook. He says, "If there's a roadblock in front of me, I go over the top of it. That doesn't mean I ignore it. I just keep trying to find a strategy to get ahead of it. My life's different now, but it's not bad."
Living with Primary Progressive Aphasia | Scott's Story
In this video, Scott talks about his experience of living with primary progressive aphasia, a rare type of dementia that affects speech and language. He shares the challenges he faces due to this condition and how he's finding ways to overcome them. Scott also discusses his involvement in research to help researchers better understand the disease.
Scott emphasises his gratitude for the support and services provided by the FRONTIER Research Group and their partnership with The University of Sydney SPEECH Clinic. "Frontier has complemented and improved my life by providing a thoughtful diagnosis and exceptional follow-up support. I’m especially grateful for the speech therapy I am receiving.”
In addition to the benefits he gains from these services, Scott enjoys contributing to research that could benefit those currently and yet to live with rare dementias. "I like to give my experience to research to find solutions," he states. "For me, living well with dementia is all about moving forward, not looking back."
As we observe World FTD Awareness Week, Scott's journey reminds us of the strength and hope that can be found in the face of adversity.
More information and help
For more information on younger-onset dementias and primary progressive aphasia, visit the FRONTIER Research Group website.
Clinicians interested in referring patients to the FRONTIER Research Group at the Brain and Mind Centre can email frontier@sydney.edu.au.
For more information on speech therapy services provided by The University of Sydney, visit the SPEECH clinic website or email the clinic on reception.swhb@sydney.edu.au.