Friday, April 26, 2013

Yes You Can -- Tori Kelly, a Parkinson's Advocate

Tori Kelly was diagnosed with Parkinson's Disease in 2007. The diagnosis came when her life was in turmoil and she was, as she told me, "at the end of my rope." Her house was on the market and if it didn't sell by the end of the year she would lose it. She shared her concerns with Soulcrafters, her Sunday School class at the Warm Beach Free Methodist Church; the house sold on the night of December 31. It was Tori's introduction to the power of prayer.

Martha White opened her home to Tori, where she spent the next three years. By being in the company of others and working on Martha's property she began to experience emotional healing for the depression that had enveloped her. As she came to know Christ more intimately she found that he was flooding her heart and mind with scripture. It was after her first year with Martha that she finally had the courage to face the Parkinson's diagnosis.

Tori began to read about Parkinson's. Although we associate the disease with tremors, she found that some of the folks with the diagnosis do not have a tremor. Some of them have voices that become quieter, rigidity in the neck, shoulders, arms and legs, and other muscles, freezing when walking (coming to a standstill with the inability to move forward), and micrographia (small, cramped handwriting). A classic characteristic is rubbing the thumb and first finger together, as if rolling a pill.

"I've become good at falling forward," Tori laughed. "Lots of people with Parkinson's fall backward, but I fall forward!"

Parkinson's Disease is caused by a lack of dopamine, a chemical messenger that transmits brain signals and regulates movement and emotional responses. By the time a person is diagnosed, about 80% of their dopamine is gone. Slowness of thinking, confusion, cognitive issues such as difficulty with memory, and high anxiety levels can also be associated with Parkinson's.

There are a couple of standard drugs that are used to treat Parkinson's Disease. Tori also believes that exercise and laughter are powerful medicine when managing the disease.

Early on in the process of coming to terms with her own diagnosis, Tori had an experience that gave her life a new focus. "I met a person with Parkinson's who was unhappy," Tori told me. "I sensed God say to me, 'Start a support group and invite them.' I said to God, 'Skills? I don't have any skills! If you want me to do this you'll have to send someone to help me.'"

That's when she met a woman from the Northwest Parkinson's Foundation. She walked with Tori through the process of setting up a support group: selecting a date, time, and place to meet; providing Tori with an article about Parkinson's and her role as facilitator; and sending out invitations to contacts in the area.

When the time came for the first meeting, Tori had no idea who might show up. All together, there were  eight to 10 people, including the person the Lord had told her to invite. The woman from the foundation told her own story, answered questions, and encouraged the group. As people shared their own stories and interests, connections were formed and the group was born.

Now the Stanwood Parkinson's Support Group has birthed another group that meets in Burlington. There are about 25 people in each group. The meetings are for sharing information they may not have learned from the doctors such as tips for dealing with the day-to-day details of life with Parkinson's. Their meetings include inspiration, humor, sharing among themselves, and guest speakers who present on a variety of topics, including breaking news and research studies. Family members and caregivers are welcome to attend. Group members operate an exhibit at the Stanwood Fair and plan to help out at other booths too. Giving back to the community is important to this group.

Tori's gone a step further -- she's become a research advocate for the Parkinson's Disease Foundation. She received training at the headquarters in New York and now she gives presentations to support groups about research trials and recruits participants.

Tori Kelly has come a long ways since her diagnosis. She's finding life to be fulfilling as she reaches out to help others who are learning to cope with Parkinson's Disease, and she is certainly enriching their lives. Thank you, Tori, for being available when God called you.

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If you'd like more information you can contact Tori  at 425-422-1067 or


Joan Husby said...

I've just been looking at some of your back posts on interesting people you know, Ginger. They're inspiring, all of them, and Tori is one of the most inspiring. Thanks for telling her story. She really knows how to deal with challenges!

irene said...

Dear Ginger -
thanks for posting this inspirational article....just shows that there is always hope and that life is better when we share with others!