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Terri May

Several years ago I was at a family reunion speaking to my sister, who has been living with Parkinson’s disease (PD) for 14 years. "I am concerned about you,” she said, “You remind me of me." I immediately knew what she was referring to, even though she never said the word Parkinson’s.

My Parkinson’s journey started three years ago when I told my primary doctor that I had PD. She said I didn't. Over the next year I was tested for brain injury, carpel tunnel syndrome and went to therapy. I revisited my doctor with a typed list (because my handwriting became illegible) of symptoms as to why I thought I had PD. This time she referred me to a neurologist who confirmed my fear.

At first there were tears and worry, but after going to a Parkinson’s conference with my sister in South Carolina and hearing doctors, like Dr. Michael S. Okun talk about all the things that are coming up in research, we were encouraged. The speakers had eased our thoughts as they would emphasize what we can do, not focusing on what we can't. We were so encouraged that I went back to my town of Quincy, Il, wanting to start a support group. I met with another neurologist and told him my plan. He actually offered to sponsor the group with his clinic. We jumped at the offer!

It’s been more than a year now and we have 45-60 people show up each month for our support group for people with Parkinson’s and their care-partners. Our support group’s mission is “Education, Encouragement and Enjoyment” and it seems to be working because our members keep coming back for more!

I stay active. My husband, David, and I love to travel and continue to plan trips. Besides walking every day, I do yoga, Tai Chi, weights at home and LSVT Loud and LSVT Big (speech and physical therapy) exercises. Even though my voice gives out at times, David and I know the importance of being social so we continue to host prayer groups and see our friends.

Since it’s important that care partners take care of themselves, David still enjoys keeping up with his own hobbies such as updating our family videos, reading, working out and maintaining his vegetable garden. He is my rock and one of my greatest gifts in this life. There will continue to be tears and challenges, but we have hope, the National Parkinson Foundation and so many good people we have met on this PD journey. We try to enjoy and encourage others on this journey of life to make every day count. Each day is a gift God gives us to unwrap. No matter how big or small the gift, each day is a victory. 

Update: Since I last wrote we have had some more good news for the Quincy, IL, Parkinson's community. Our hospital has started two Parkinson's-tailored exercise programs; the Quincy Clinic has started a Parkinson's Caregivers Support Group that David attends. Soon, we will also have a LSVT Loud Crowd class for those who have taken LSVT Loud voice therapy. We have been so pleased and proud of our town for stepping up to make a difference in the lives of people with Parkinsons and their caregivers. I would like to thank my entire community for all you do to make a difference and spread the word of hope to us.

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