What has your journey been like since diagnosis?
I was diagnosed with Young Onset Parkinson’s (YOPD) when I was 54 years old. I had just finished my certification in Reading to advance my late start career as a teacher. I was finally getting around after knee replacement surgery over the summer and my physical therapist would tell me I could walk better if I would only swing my left arm. But it wouldn’t move.
I searched the internet and no matter how I worded the question, it would take me to a Parkinson’s site. When I got the news, I spent months feeling sorry for myself. I researched doctors and found the best Movement Disorder Specialist in Florida. He promised he’d do everything humanly possible to make my life normal.
I signed up for every Parkinson’s research study available. I read everything I could get my hands on. I spent the first five years trying to pretend it wasn’t real. My meds gave me horrible side effects, including falling asleep just about anywhere. I gained 40 lbs and looked as awful as I felt. The side effects were so awful that I had to stop teaching Kindergarten and go on Social Security Disability.
Then, one day, I was reading the insert that came with the anti-depressant I was taking and it said it could cause weight gain. I stopped taking them that day. Sitting at my computer I saw a man riding a bike on the internet and when he got off the bike he could function for a short while without symptoms. Then I read about protein interfering with Carbidopa/ Levodopa so I stopped eating meat. My sweet husband bought me a shiny new bicycle and I began riding every day.
The best treatment for Parkinson’s was exercise. I started doing my yoga again every morning. It’s been 10 years now. My medication is stable and I don’t experience side effects. I do my yoga, ride my bike, eat well and have lost 45lbs.
I had to finally take control and not let Parkinson’s control me….. waiting around for the next bad thing to happen. I am in control of my life now and if another one of those side effects creeps up, I deal with it. Sometimes I drool, so I chew gum to prevent it. My toes curl terribly, waiting for a Botox treatment, so I found these cool little rubber things for Hammertoe that fit on my toes and holds them in place. I control what is happening, fix it and move on. I am living well!!
How do you live well each day?
I wake up every morning to three little dogs waiting to go outside. I put my feet on the floor, stand and stretch my sore body, pop my first dose of medication in my mouth and open the back door. I smile…. I make myself smile. Because staying positive is KEY to getting energized each day.
I put my mat on the floor and do my yoga stretches first thing in the morning. My bike ride can be done anytime during the day, so I don’t have a schedule. But what makes my day so inspiring is how I don’t focus anymore on myself. I focus on what I can do for others. I volunteer at the nearby elementary school and help the Kindergarten teachers. I continue to do my own cleaning, mopping and scrubbing so I can keep my body moving, I travel back and forth to Ft. Lauderdale where my daughter owns a Real Estate company and help her out in the office, and I visit with people who aren’t as fortunate as I am and can no longer get out of their homes to do the things I am still able to do.
I no longer fall asleep at the drop of a hat. I can go to bed at night and most of the time go right to sleep. And my medication is working perfectly now. No side effects occur, almost no OFF periods and my Movement Disorder Specialist is amazed at how well I am doing.
What do you wish you would have known when you were diagnosed that you know now about living with Parkinson’s?
I wish I would have known how important exercise is. Besides a positive attitude, moving and pushing yourself a little further each day keeps your mind and body in sync. And I wish I would have known how different each person’s Parkinson’s affects them. No two people are alike. It’s kind of like we each have our own Parkinson’s fingerprint. My Parkinson’s is my fingerprint of how I deal, feel and grasp the disease.
JOYCE HAND’S PHILOSOPHY
What do you wish everyone living with Parkinson’s knew about living well?
I wish everyone knew that living well makes you feel uplifted. Living well changes how you feel about your life, your future and how you feel about what you must focus on to make life as wonderful as you possibly can. I have so many people tell me that I inspire them. And if living well is an inspiration to others, then so be it!
SHARE YOUR VICTORY
Each month, we spotlight someone from our Parkinson’s community who embodies living well today – what we call Moments of Victory®
Your story, like Joyce’s, could be featured on our blog and Facebook page so others can learn from your experiences and victories.