When Bill Andrus was diagnosed with Parkinson’s seven years ago, at age 51, his first reaction was relief. “If we know what it is, at least we can treat it.”
That relief was quickly replaced by anger and fear of the unknown. “Now, I knew I had Parkinson’s but what did it mean? How long did I have? How would Parkinson’s impact my life, my career and my plans?” As a project manager in the financial services industry, Bill says, “I was all about planning and goals but Parkinson’s makes you second-guess and re-evaluate everything.”
Within 18 months of the diagnosis, Bill took medical leave. “The job required a high level of energy, multi-tasking and concentration, but Parkinson’s made all of this difficult,” says Bill. “I was worried about finances and my future. I didn’t know anyone else with Parkinson’s, so it felt as if I was on my own.”
But not for long. Bill’s neurologist and staff at the Centre for Movement Disorders in Markham, Ontario put him in touch with his regional Parkinson Society. Bill says, “It was the best thing they could have done because, within days, I was in contact with them. Sandie Jones, Coordinator of Client Services and Education at Parkinson Society Central & Northern Ontario spent time with me on the phone. She sent me a wealth of information, including brochures on everything from what Parkinson’s is to how to treat individual symptoms. I couldn’t have asked for more.”
Bill decided to join his local Parkinson’s support group. Any initial fears about attending were dispelled by the friendliness of the people he met. “It’s been a big help for me to interact with people who have had Parkinson’s for 10, 15, 20 years,” says Bill. “Looking at them and seeing what they have accomplished since their diagnosis gives me a lot of inspiration.”
As current leader of the group, Bill finds, “One of the best things about being in a support group is having the freedom to acknowledge what you are feeling and to ask questions that you wouldn’t ask in another group of friends.”
To manage his symptoms and live as fully as possible, Bill relies on three cornerstones: medication – the dosage has increased over the years; exercise – a 30-minute daily walk and regular yoga; and rest – fatigue and sleep problems are his most troublesome symptoms, so he will rest in the afternoon after a difficult night.
The sleepless nights have yielded an unexpected bonus, in unleashing Bill’s creative side. He started writing poetry one night when he couldn’t sleep; now it’s a regular activity. He says, “It’s a different way of expressing my thoughts. It also helps me reduce stress.”
An avid fundraiser, Bill walks with about 20 family members and friends in Parkinson SuperWalk each year. For him, “Fundraising is about raising awareness. If somebody cares enough to make a donation, then that’s one more person who knows about Parkinson’s.”
Bill’s message to people with Parkinson’s is: “Keep active, keep positive and keep a good circle of friends around you.”
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Parkinson’s
By Bill Andrus
51 years old and I have Parkinson’s Disease!
The Doctors told me so. They are the experts.
What do I feel? How am I supposed to feel?
Relief, I actually feel relief, for a while.
Doctors, tests, medications, therapy and more
Over the last years, three or four.
Finally a label, a diagnosis, a reason.
It’s not MS, ALS, Huntington’s or a Brain tumor.
I have Parkinson’s, the doctors say!
Finally a reason my writing is illegible and small,
And my arm does not swing au naturel.
Understanding now, that little annoying tremor,
And why, when during a walk, I may stumble.
Tiredness, fatigue, small tasks require big efforts.
It’s OK, I have Parkinson’s Disease.
Relief is a very quick emotion, soon over.
Denial, disbelief fills the void. How can they be sure?
Doctors, only human, make mistakes.
Parkinson’s is treatable, they say, good drugs and exercise.
But what I have, must be Curable and soon.
Most likely a pinched nerve, I believe.
I am only 51, how can I have Parkinson’s disease?
Frustration, anger, confusion. This was not in my life’s plan.
Levodopa, carbidopa, mirapex, clonazapam and more
Drugs, I don’t want to understand and certainly should not need.
Exercise, stretch, walk, eliminate stress, get your rest, they say.
My career? I choose an early leave, Focusing now on staying well
For me, my family and our friends.
I have Parkinson’s disease, like it or not!
No longer 51, I accept what I cannot change.
My life’s plan now a continuous curve,
around the corner, I cannot see.
Each day, new challenges, full of surprises.
On questions of why and what ifs, I don’t dwell.
I am where I am and it is what it is.
I have Parkinson’s disease and it will be OK.
Doctors, nurses, health workers and support groups help,
Prescribing, teaching and sharing their wisdom.
Drugs, therapy, exercise, knowledge and caring.
I accept, learn and work with each one,
Building strength, confidence and courage to go on.
I have Parkinson’s disease, but it’s not all bad.
Through talking, laughter and being with others,
Sharing tears of joy and frustration, the journey continues.
Supported by family, friends and other Parkinsonians,
Learning from their stories and sharing mine,
I move forward one hesitant step at a time.
I feel lucky and a little relieved.
I have Parkinson‘s disease and I know what it is!
To see more examples of the creativity of people with Parkinson’s, visit Creative Expressions.
If you would like us to feature your journey with Parkinson’s, please emaileditor@parkinson.ca.