Billy Connelly and Michael J Fox, with their celebrity status, have brought an increased awareness of Parkinson’s disease to the world. Billy Connelly has even brought his wicked humour to the conversation. Their willingness to talk about living with the condition makes a great contribution to the awareness and understanding about a disease that is a lot more common than most of us realise.
You may have noticed the Shake It Up Australia campaign on 11 April, World Parkinson’s Day. It also seeks to raise awareness about the disease. Here are some of the things they want us to know about the disease.
There are more than 100,000 people living with Parkinson’s disease in Australia. The prevalence of Parkinson’s is higher than many cancers, including prostate and bowel cancer, and the number of people living with Parkinson’s is four times that of people living with multiple sclerosis in Australia.
One Australian is diagnosed with Parkinson’s every 40 minutes. One in 5 of those people will be under the age of 50.
Parkinson’s is the second most common neurological disease in Australia after dementia.
The most commonly known symptoms of Parkinson’s include tremors, difficulty with speech and a shuffling gait, however the symptoms vary from person to person and some are not outwardly obvious.
Parkinson’s can lead to other issues such as cognitive changes, which are often mistaken for dementia. However, it is estimated somewhere between 30-60% of people living with Parkinson’s will go on to develop a form of dementia.
One dementia most commonly associated with Parkinson’s disease is Lewy body dementia, little known but in fact one of the most common causes of dementia in Australia.
Lewy body dementia may not be as well known as Alzheimer’s disease, and a local lad called Tom Harmon may not be as well known as Billy Connelly or Michael J Fox, but he shares with these celebrities their diagnosis of Parkinson’s and Lewy body dementia.
The world can embrace the celebrities, but Tom is one of my heroes. Tom has an incredible outlook on life and, as with Billy Connelly, has a wicked sense of humour. He was diagnosed with Parkinson’s in 2014 and with Lewy body dementia a year later.
Tom describes himself as a fairly composed, positive person. So when he received his first diagnosis, he decided he would find out as much information as he could.
“I was told, at this stage, it can’t be cured with pills or exercise. You’ve got it for the rest of your life.”
“After the diagnosis of Parkinson’s, my daughter encouraged me to make contact with a Parkinson’s nurse. She was a most professional and compassionate person who provided me with invaluable information and support. I subsequently joined Parkinson’s WA. I wanted to find out what I could do and know the best way I could deal with it.”
“Walking into the Parkinson’s Association and one of their support groups was a powerful experience for me. I instantly realised that I wasn’t the only one facing the challenge, that I wasn’t alone in my struggle, and I knew I would find a way to live my life to the full despite the diagnosis” Tom says.
One of the key things Tom learned was to remain physically active. After his diagnosis, Tom took up yoga, PD Warriors, table tennis, cross training, boxing and Qigong. He also practices hand writing and attends speech classes. Tom says by staying active he is helping to slow the progression of the physical symptoms of Parkinson’s.
Tom and his wife Annette also called a family meeting to explain the disease to their children, and discuss how it would affect their dad.
A year later, when Tom was diagnosed with Lewy body dementia, he went through the same process; joining the Lewy Body Dementia Association in the US, and Alzheimer’s WA for more local support. Another family meeting was organised.
He took up Sudoku, quiz shows and crossword puzzles, and notes important meetings and actions in a diary.
“Although I keep notes, I still try to rely on and challenge my mind”, he said.
He has lunch with his friends, started visiting the local memory café and participating in various social activities on a daily basis. Tom still drives, but is aware he will have to stop one day in the future.
“I know all the local bus routes and train stops.”
For anyone with a new diagnosis Tom’s advice is to accept the diagnosis, be open with your family, and look for information to support yourself.
“Being a member of an association or support group can help you to feel like you still belong. You can meet other people who understand, share stories, shed some tears and have a laugh.”
“I’ve previously worked with children with disability. They taught me that in life we should appreciate what we have and not worry about what we don’t have. I’ve tried to live my life by that creed, before and now after my diagnosis.”
Annette said, “Tom’s philosophy is not to allow Parkinson’s or dementia to define him, but he defines these conditions through the way he lives.”
She believes that Tom’s attitude to life has contributed positively to his overall physical and emotional wellbeing.
As I said, others can have Billy Connelly or Michael J Fox as their heroes. For me, Tom Harmon is my man.