My name is Kate Ward and I was diagnosed with Parkinson’s in September 1999. I’ve had Parkinson’s for 10 years and am currently a committee member of YOPPSA (Young Onset Parkinson’s Support Group of South Australia) and working part time at Parkinson’s South Australia as the Office Administrator.
I’d like to give you a personal account of what happened to me on the “day that turned out nothing like I had planned.”
I went to the local doctor because I was suffering severe migraines due to menopause. At this time I also mentioned to him that while watching TV or reading a book one evening, the little finger of my right hand twitched.
The doctor referred me to a neurologist ( I’ll call Dr X)“just to check out what was going on.”
After some finger exercises, walking up and down, tapping toes etc, Dr X gave me an “in depth” description of Parkinson’s disease – substantia nigra, corpus striatum, dopamine receptors and neurons.
I was speechless. I thought PD was an old person’s disease and really knew nothing about it. My mind went blank but at the same time raced at a million miles an hour.
Dr X talked for about 30 minutes and I was floored! I could take hardly take in anything about my diagnosis until Dr X advised me of 3 things:
- I had approximately 5-10 good years left.
- I should go home and get my “things in order.”
- I would probably end up with dementia.
At the time Dr X said I did not need medication and make an appointment to return in about 6 months to “review the situation.” He gave me no written information nor did he direct me to a support group or the Parkinson’s Association.
I remember how the words “degenerative disease” and “no cure” stuck in my mind.
When I drove home that day, I don’t know how I got there. I just remember thinking “I’ll just have to divorce Tony, he’s too young to be saddled with a person who is going to get dementia.” What about my children? I had decided that we would need to move to a smaller house where there wouldn’t be enough room for them and not be lumbered with a sick parent. I guess the divorce was off too!
My life had been totally turned around and became and emotional roller coaster.
After I pulled up in the driveway and saw my husband, Tony working on his Holden and pulling out an engine. He took one look at me and dropped the engine back into the car. I was a blubbering mess.
All I can say that it took me a two years before I approached PSA and subsequently YOPPSA. I finally took control of my life as a person with Parkinson’s.
Reflecting on my experience, I realize that if Dr X had referred me to a Parkinson’s support group or the Parkinson’s organization, I probably could have handled my Parkinson’s disease diagnosis differently.
Newly diagnosed people are often upset to find they have been diagnosed with PD. They may find difficulty accepting they have PD or may be able to manage their disease. Some flounder in this state for quite some time. In my case it lasted 2 years.
By joining YOPPSA, I received information, support and the self confidence to manage my life. The support group has also provided friendship and encouraged me to use my strengths to manage my condition.
Knowing there are people I can turn to with issues such as depression (up to 30% with PWP may also have depression), exercise and knowledge about my issues is crucial. I can’t stress how important the support group has been to me as well as my husband.
I hope this article will encourage people with Parkinson’s to contact their Parkinson’s Association and join a support group – it’s the best thing I’ve done to help me on my walk through life with PD.
“When one door closes another opens – it may not be the door we want but just open it and step right in – you might be pleasantly surprised!”