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Hello My Name Is...

After almost 18 years of having Parkinson’s and 15 years as a care partner to someone with Parkinson’s it can become easy to find myself defining myself by this disease. Especially considering we are advocates for the Parkinson’s community, and do a lot of public speaking and writing and education for the PD community. I find it becomes a challenge to NOT define myself by this disease when I am having issues…

Hello my name is Tremors…

Although I have had Deep Brain Stimulation Surgery almost 10 years ago, some “Bleed through” symptoms have started to creep into my life… When they do, such as tremors, it reminds me, “Hey you have Parkinson’s!” I drop a cup, I catch someone staring at my hands. I have forgotten all my old tricks for hiding them… I feel like I have a big name tag on my shirt that says HELLO my NAME IS Parkinson’s….

Hello my name is Dystonia…

For me Dystonia has been a horrid symptom of Parkinson’s. Painful muscle spasms in the neck and other parts of my body. Maybe my name tag should read "Hello my name is Pretzel Woman". Botox has helped but I still have those days that I allow it to define me.

Hello my name is Dyskinesia…

Dyskinesia, Slowness of movement, Falling, Depression, Gastrointestinal issues, Apathy…. I could write name tags for so many defining issues…

I have to consciously choose to NOT be defined by Parkinson’s disease! How? Faith, Family, Friends, Fun, Strength and Hope! Michael and I have a very strong faith and for us it helps us stay grounded. It helps to define us at times when we may feel that PD name tag going on. Our family is very important to us, and we are not afraid to ask for help and to educate them about Parkinson’s. Some take it better than others, but they step up when it matters. We have friends both in the PD community and some dear friends who have known us for years that have seen us at our best and worst. They do not define us as anything other than Michael and Gretchen.

We laugh a lot, sometimes at each other, sometimes at ourselves. We can find the joy in simple things like soaking our feet in a kiddie pool with the sprinklers cooling us off on a hot day. All of this give us the STRENGTH and HOPE we need to keep going every day! It is imperative that we remember we are more than PD.

Hello my name is Wife…

Wife, and I love to spend time with my husband living and laughing!

Hello my name is Mom, Grandma, Daughter…

Mom, Grandma, Daughter, and with 5 grown children and 5 grandchildren the fun never ends! I am also a daughter of aging parents.

Hello my name is Advocate…

I am an advocate, I am an author, CEO of a non-profit for Parkinson’s Disease, a public speaker, a person who loves to laugh, and swim and help others to remember that they too are more than just this disease, that they are defined by WHO they are not WHAT they have!

While there is no cure for Parkinson’s, we can work together to help each other out. Keep finding ways to laugh, to live and to stay active. Get involved with others and educate yourselves. We are not this disease!

Hello my name is… Gretchen Church.

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