What has your life been like since your diagnosis?
They say you can have Parkinson’s for many years before the first symptom appears; so, it's hard to say when it first started. The first time I had an inkling that something was wrong was when I felt a tremor in the ring finger of my left hand. This was in 2011.
It would happen when I was typing. When I looked down, it stopped. I could never see it. I could only feel it. It was a thrum.
Around the same time, my shoulder began to hurt. I thought it was a pinched nerve or something similar. I mentioned all of this to my internist and he ran me through some cursory tests.
I held my hands out. No tremor. He placed a sheet of paper on my outstretched hands, still as stone. Not even the slightest vibration. He sent me to a neurologist. But every time I went to the neurologist, the tremor would stop.
By Christmas in 2011, I was seriously considering moving into my neurologist’s office just so they could see what I was talking about. When I was at home or work, my tremor could involve my whole left arm and dystonia (awkward painful muscle cramps) would turn my hand inside out. However, we still had no idea what was going on because all my symptoms would stop at the neurologist's office.
An MRI in January of 2012 showed nothing.
Then, before my third appointment to the neurologist in February of 2012, I drank an entire espresso in the waiting room. Within ten minutes of being called back, I was walking back out of the office with a diagnosis of Parkinson’s, a prescription for Pramipexole and directions to call the office in two weeks to let them know how things were going.
I don’t remember walking to my car. I do remember sitting in my car and sobbing.
I was 44 years old. I had a husband, three children and a career. I loved everything about my life and it felt like it had all been destroyed.
At that moment I wouldn’t have believed that in time I would come to look at my diagnosis as a very rare and special gift. One that would lead me to a much more meaningful existence where I would come to understand what it means to enjoy and value life.
How do you live well each day?
I live today. Not yesterday and not tomorrow, but today. That’s my number one thing. I don’t spend time lamenting what is gone. I don’t look forward to a cure. I enjoy today, and I do my level best to feel as good as possible every day.
I dance every day. I found modern dance about three years after my diagnosis. It feels like the perfect exercise for my Parkinson’s because it is physically and mentally challenging, but I love it. I have never enjoyed exercise for its own sake - a gym membership has never been on my Christmas list. But dance… I get lost in it. I have spent entire days just eating, sleeping and dancing.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
That I would be okay. That I would still be happy. That my career was not the definition of me. And that Parkinson’s would not signify the end of adventure in my life. I am so much stronger now than I was then. Parkinson’s has brought the most amazing experiences and people into my life.
Amy Carlson's Philosophy
What do you wish everyone living with Parkinson’s knew about living well?
YOU have to change. Your life has been hijacked and you need to adapt. That doesn’t mean that everything in your life has changed, but it's important to recognize and accept that things are not the same as they used to be.
Embrace Parkinson’s, make it your friend and squeeze every last good thing out of it that you can.
This is the perfect excuse for NOT helping with the annual fundraiser. This is a wonderful catalyst for finally eating well and taking care of your body. Get the handicap parking placard. Go on the trip to Greece you’ve been putting off. Talk to your family. Learn a new sport. Meet people at a support group, fundraising event or The Victory Summit® event put on by the Davis Phinney Foundation.
Parkinson’s is a wonderful reason to say yes to things that are new, and no to things that feel burdensome or obligatory.
Amy Carlson is part of our cohort of Davis Phinney Foundation Ambassadors. Our Ambassadors are volunteers who share resources and information throughout their local and regional communities to help people take action and improve their quality of life with Parkinson’s. Connect with one of our Ambassadors and begin your journey today of living well with Parkinson’s!
Share Your Victory
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®.