What has your life been like since your diagnosis?
I retired in May 2017, from Louisiana State University where I was a professional collaborative pianist for 30 years and collaborated in recitals with over 650 faculty members and students. Because my identity as a pianist was so strong, I found it necessary to redefine myself and discover who I was beyond the keyboard.
I went back to my old hobby of sewing, and now I am sewing handbags for women who cannot handle traditional closures due to arthritis and other disabling conditions. I have made and given away nearly 35 handbags so far.
I went back to other things I used to do and love as well such as charcoal drawing and gardening. Last summer I even hosted an in-home day camp for seven neighborhood children and taught them a bit about cooking and sewing.
But the most wonderful thing was when God reminded me of His ever-present care and love by reuniting me with an LSU alumnus who I accompanied on her senior clarinet recital in 2004 and who is now my neurologist!! Her name is Dr. Sarah Perez, and she joined the Tulane University Medical School in August 2017. God said, "I'm not finished with the two of you." And so, currently, we speak and play music at Parkinson’s symposia and support groups around the region. We call ourselves "Full Circle."
How do you live well each day?
The first thing I do each day is thank God for another day and the love of my friends and family. Then I remind myself of the little prayer I've posted on my bathroom mirror. It says,
"Lord, help me be the kind of woman, who, when her feet hit the floor each morning, the Devil says, Oh, NO! She's up!"
I do all I can to keep a positive attitude and live in the present moment by staying busy with my daily chores around the house, exercise and piano practice (I practice every day.) I take a well-deserved rest after lunch and hit the floor again after about 30 minutes. I often meet with Parkinson’s friends, a small group of three women who support each other and talk about our latest symptoms and meds.
I’m also careful about the language I use. I prefer the word condition to disease as a disease implies a more isolationist form of necessary care. A condition is something we all hope to manage with exercise and medication......until the cure comes along!!!
As you can see I live with hope; having found a silver lining of sorts in my diagnosis. I have been given a ticket off the stress track of teaching and performing and now I nurture other talents the Lord has given to me. Through all of this, I have met so many wonderful and caring people.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson's?
I wish I had been told how valuable and beneficial exercise is for managing and even delaying symptoms. I also wish I had had knowledge of and contact with an uplifting organization like the Davis Phinney Foundation to help me feel less despair than I did in the beginning. Since those early days, I have learned much about nutrition and the timing of food intake to get the maximum benefit from my medications. I also have a regular exercise regimen of cycling and muscle work. (I have an extra struggle since I have had three knee replacements in my right knee, two of which were due to falls because of dyskinesia related to being prescribed too much medication!!!) I wish I had spoken up more when my doctor overprescribed the Rytary and when he did not titrate me with the drug!
It is so important to read everything you can find about Parkinson's, then see how it relates to you, or perhaps how it doesn't relate to your symptoms at all!! When you've met one person with Parkinson’s, you've met ONE PERSON with Parkinson’s.
Jan Grimes's Philosophy
What do you wish everyone living with Parkinson's knew about living well?
I wish every person with this condition knew the value of a good attitude and supportive friends. We all suffer from a down day occasionally, but we have the opportunity every minute of the day to start again. We can pull ourselves out of a down day by getting active in something we love, calling a willing listener or engaging in a spiritual activity like prayer or meditation. Once you can, with regularity, live in the present moment and find the silver lining of your diagnosis, living well becomes much easier. And the struggles of Parkinson’s will be possible to work through because you’ll have hope and belief that you’re never alone!!!
Note: In May 2019, Jan Grimes and her doctor, Sarah Perez, gave a presentation about Parkinson’s at the LSU Science Café. They also played music, shared poetry and talked about what it’s like to live well with Parkinson’s. If you’re looking for some sweet sounds and inspiring words today, give yourself the gift of listening to these incredible women.
Share Your Victory
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®.