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Sandi Gordon lives with – and despite – Parkinson’s



Sandi Gordon, who has lived with Parkinson's disease for almost 20 years, rolls out pizza dough at her home in Kirkwood, Mo. UMNS photos by John Gordon. 











By John Gordon*
April 12, 2007 | KIRKWOOD, Mo. (UMNS)

Her speech is frequently slurred, simple household chores are difficult, and she wears kneepads in case she falls.

But Sandi Gordon, who has struggled for nearly two decades with Parkinson's disease, faces the minute-by-minute challenges of Parkinson's with faith, courage and purpose.



Social worker Terri Hosto (left) leads a Parkinson's support group meeting at Kirkwood United Methodist Church.  

"I was not angry when I found out I had Parkinson's," says Gordon, who has written three books about her journey with the debilitating disease and how she is inspired to keep going. "It never occurred to me to be angry."

Gordon also founded a support group that meets monthly at her church, Kirkwood United Methodist, just outside of St. Louis.

April is Parkinson's Disease Awareness Month. Up to 1.5 million Americans have the incurable disease, which affects the part of the brain guiding movement of the muscles.  The cause is unknown.

Gordon began showing Parkinson's symptoms while in her 20s, beginning with tremors and occasionally feeling like she was moving in slow motion. Her diagnosis came when she was 30 and pregnant with her fourth child.

"I was relieved. I thought I had a brain tumor," she says. "I was relieved to know that it was just Parkinson's, not something that was going to be fatal."

Now age 48, she is still among the younger sufferers. Most are over 50 when diagnosed.

Two choices

While the symptoms of Parkinson’s have progressed over the years, Gordon’s goal has become seeing her four children – now ages 18 to 25 – complete college. Her oldest, Andrew, has graduated, Becky and Stephanie are still in college, and Gina begins her freshman year this fall.

"I had two choices. I could either be a crab about it and … ruin my quality of life," she says, "or I could go on with my life and find positives about Parkinson's."

“I had two choices. I could either be a crab about it and … ruin my quality of life, or I could go on with my life and find positives about Parkinson's.”–Sandi Gordon

She found comfort in writing. Her first book, titled Parkinson's: A Personal Story of Acceptance, was followed by Smiles for the Heart and More Smiles for the Heart.

"I started praying to God, 'Give me purpose in my life, no matter what I have to deal with,'" she recalls. "And I felt like that's what happened when I started writing books. I felt I had a lot of purpose then."

Along the way, Gordon began looking for other young Parkinson's sufferers to talk with. She began a support group that quickly outgrew her living room and now includes about 100 people.

"It helps a lot of people to know you're not alone in those kind of situations," says the Rev. Sue Mitch, associate pastor of the Kirkwood congregation. "But it would be my thinking that Sandi would be the spark, Sandi would be the positive presence for a spirit of hopefulness and perseverance for the rest of the group, as well as taking some from others."

A deepened faith

Gordon's outlook for living with Parkinson's is proactive and hopeful. She travels to speak to groups, leads an annual spring retreat for women at Kirkwood and plays with the hand bell choir at church.



Gordon, 48, rehearses with the Kirkwood United Methodist Church hand bell choir. 

But every two hours, a timer beeps to remind her to take her medication. She also has undergone brain surgery in an effort to relieve symptoms.

"Whenever the medicine gets really good, then my speech is clearer and I tend to walk without any problem," she says. "But then as the medicines start wearing off, I start having problems with moving. And if I get too much medicine in my system, initially, when I take a pill, then I have a problem with involuntary movements."

Making pizza dough or talking on the telephone can be difficult, and some phone conversations are even frustrating.

"People on the phone are very rude to me a lot of times because they can't understand what I'm saying," she says. "Rather than just asking me to repeat, they just assume that I'm being - I don't know what they assume, but they're not nice about it on the phone."

Gordon says the disease has changed her focus and priorities - deepening her faith and teaching her to live one day at a time, be less self-centered and feel gratitude for each day.

"I appreciate the little things, like being able to walk across the room, being able to answer the phone and being able to speak clearly," she says.

"Now I see them as gifts."

*John Gordon is a freelance producer and writer based in Marshall, Texas. He is not related to Sandi Gordon.

News media contact: Fran Walsh, Nashville, Tenn., (615) 742-5470 or newsdesk@umcom.org.

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