My Parkinson Story is a weekly column featuring member of our community, sharing their stories with PD. We are interested in sharing a wide array of experiences, including yours! PD looks different in everyone, and affects everyone differently, including friends and family of those with PD. If you’d like to share your story on our blog, please email us.
MUSIC AND MOTION – How I Live with Parkinson’s
For the last twenty years of my professional career I was employed by the University of Cincinnati College-Conservatory of Music. I held a variety of positions and spent most of my days running a school of 1,000+ pre-college and community adult students in the Preparatory Department. I liked to take advantage of the performances and classes at CCM, and in Fall 2012 I decided to take the beginning adult ballet class taught by my dear friend and colleague Jonnie Lynn Jacobs Percer. There I was at the barre, short, overweight and with a trembling hand. I always breathed a sigh of relief when we turned around and the right hand was on the barre and the trembling stopped. My left hand was perfectly still, but then several beats later, we turned and as soon as I let go of the barre the trembling in my right hand started. I knew there was something wrong and I was scared.
Fast forward to early 2013. I had cut my finger on a can I was opening and I went to my doctor. She took care of my injury but was more concerned about the trembling in my hand. She said “I am going to make an appointment for you to see a neurologist. I just want to make sure it is nothing serious.” I knew then it was serious. I had to wait three months for an opening and in the beginning of April 2013 I got into the neurologist’s office and I am sure he knew I had Parkinson’s as soon as I walked in his office. Movement Disorder specialists are amazing. There were no swanky tests with lots of computer printouts. Nope, just a walk down the hall, a simple cognitive test and a few other non-earthshattering tests and BAM! I have Parkinson’s Disease.
I have been a person with Parkinson’s Disease for nearly 10 years come April of this year (2023). My life has and hasn’t changed a lot. I have retired, and now have time to exercise and hopefully keep my symptoms in check. I spend my time enjoying life and taking care of myself. I try to get to Silver Sneakers classes twice a week (thank goodness you can take classes on YouTube!), along with Tai Chi, Zumba and CB Moves for Parkinson’s at the Cincinnati Ballet. Along with my many music opportunities (NOT obligations, but opportunities) I am one busy retiree who happens to have a serious disease, but for now, I’m riding the wave. My twice yearly visits to the specialists assure me that I am doing extremely well in managing my symptoms. No one is predicting the future.
But that’s right for all of us, eh?
I wrote the following nine years ago about how PD affects my music making. I am happy to report that I am still playing and performing, more than I have been doing for years. Music and Motion, that’s my tune.
April is Parkinson’s Disease Month. During this month, all of us (patients, family members, caregivers, and other support people) affected by this degenerative, debilitating disease are encouraged to speak up and tell others about this disease and collectively work to find a cure. Approximately one in every 100 people over the age of 60 are diagnosed with this disease; and about 60,000 are diagnosed with Parkinson’s every year. But many people are diagnosed at a younger age. I am one of them; and I am a professional musician.
Fortunately music is my avocation and not how I earn a living; but I have been playing oboe for 45 years and my identification as a musician is a big part of who I am. Parkinson’s Disease at this early stage plays itself out in my music making more than in my professional or social life. I was diagnosed one year ago with the disease, but as I have come to learn, PD lives in your body for a long time before it manifests itself. Silently it eats away at the brain cells that produce dopamine which is necessary for controlling movement of your body. By the time the tremors and shaking of the limbs occur, up to 80% of the dopamine your body produces can be lost. Like most PD patients, a tremor in my right hand started me on this journey.
But having PD is more than just involuntary shaking. There can be a loss of cognitive abilities and that scares all of us with PD. There are effective medications that can control shaking, at least in the early stages, and an active exercise schedule can be very effective in your overall health and keeping proactive with the advancement of symptoms. But this is what I found out about PD through my music:
1. I get tired. On orchestra days, I wake up early, go swimming, work a full day and then go to a 2.5 hour rehearsal. It is exhausting. My body gets tired easier. Or is that because I am getting older? So often I question whether an ache or moment of forgetfulness is my PD accelerating or is it just because I am 58? On nights when I don’t have rehearsal, I don’t have the energy to take out my oboe and make reeds and practice. I prefer to do things that are relaxing and stress reducing.
2. I can’t follow fast passages in my music like I have been able to all my life. I simply can’t accurately process lines or repeated ostinati, arpeggios and other tricky passages at presto tempi. My brain doesn’t analyze them as fast and my fingers are slowing down because of that. I have always been the musician who loves to play fast pieces. Now I savor slow melodic lines and concentrate on tone and control. Unfortunately, that doesn’t work with playing in an orchestra. You play what the director chooses. I have dealt with this by having an assistant first oboist join our orchestra. But the revelation that what came naturally for so long is now beyond your ability is sobering.
Despite these changes in my ability as a musician, the act of making music is critical to who I am. I continue to play what I can and playing such a difficult instrument as the oboe presents itself with numerous challenges to the most able minded performer. I have now taken up the cello through our New Horizons string orchestra and the opportunity to make music with no pressure or expectation is invigorating. I am playing just because I want to and that is rewarding.
Amy with Michael J. Fox
Finally, please help the million of us in this country who have PD. There are many fine organizations locally and nationally who are working tirelessly for both a cure and ways to reduce symptoms of this disease. I participate in our local Parkinson’s wellness organization and nationally through the Michael J. Fox Foundation. Last summer I began sewing handmade aprons to raise money for the Fox Foundation. I raised over $4,000 and had the wonderful opportunity to meet Michael J. Fox two weeks ago in New York City at a Foundation event. There are over 1,000 of us that are part of Team Fox, raising money in our own way but with one objective – to find a cure. There is also a serious need for volunteers for trials – both people with PD and especially those without – to function as control groups. The website has comprehensive information for you to get started. I have participated in one research project so far. Together we can do so much to fight this disease.
Amy (first row, second to left in a red shirt) with friends and her fundraising aprons.
My stories of past and present are not unusual; I have met many people with Parkinson’s who are active, working, with a positive attitude and leading full lives. I see what is possible. Most of all I am grateful to all the strong women in our Friday CB Moves for Parkinson’s class; they are brave and beautiful and renew my spirit.