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Patient Stories


Dianne Jones: Chicago to Cleveland

Some might say Dianne Jones is one of the lucky ones. Diagnosed with idiopathic peripheral neuropathy 25 years ago, she experiences numbness and tingling but she has no pain. Her hands and feet are numb; moving around is difficult. She loses her balance, bumps into things, her gait is uneven. She is stiff and uncoordinated, and needs a railing to go up and down stairs. Her hands get really cold – or really hot.

Active in her real estate business and in her church, Dianne enjoyed many of her tasks: typing, sewing and mending, serving communion. She especially liked typing and was quite good. Now, she can’t type or thread a needle. It started getting worse about 10 years ago. She could walk fast but not slow – she lost her balance, she stumbled. Her doctor even noticed that she trailed her fingers along furniture to help her keep her balance – something Dianne was doing without thinking.

“People need to do what they can.”

To keep from falling, Dianne purchased a cane. Onlookers often draw inaccurate conclusions when they see people fall; the cane helps Dianne’s stability and sends the message to others that she has physical limitations. Dianne volunteers with the ‘Culture Bus’ that takes seniors with early memory loss to cultural events. Using her cane and struggling to walk, she is often seen as one of the patients. Still she enjoys the outings and is philosophical, “People need to do what they can.”

Dianne and her husband Doug have always been active. They liked to bike but when Dianne could no longer control her own bike, they bought a tandem. They try to ride 20 miles every week and even participated in a 300 mile race in Wisconsin. Each week when Dianne goes to exercise class, Doug goes with her so she can hold on to him and maintain her balance through the moves.

Last year a friend of hers living in South Dakota saw an unusual tandem bike being ridden through town as she was driving down the street. She rolled down her window and asked what was going on. Dominic Gill explained what he was doing with ‘Ride Across America’ and she immediately told him about Dianne.

Dominic and Dianne eventually connected and she agreed to join the ride. Because she and Doug ride often, Dianne was confident in her ability to ride with Gill. But, she and Doug were used to riding on trails; Dom and the team were riding on roads. She was even more concerned about camping on the trip; it’s much harder to get around in the dark with her balance issues. But when she heard the story of Ernie she was determined to go; she was saddened to hear that he did not live to see the ride completed.

“Every day was different; every day was an exciting adventure.”

Leaving from Buckingham Fountain in Chicago, Dianne had Doug at her side on his own bike. Traveling to the Rock and Roll Museum in Cleveland, they rode 400 miles in 8 days. Along the way they became honorary members of a motorcycle club when Dianne noticed a couple of men wearing T-shirts with ‘Black Pistons’ on the front and wanted one. They all got shirts and the motorcycle club escorted them to a hotel, stopping traffic along the way to let them go through red lights. “Every day was different; every day was an exciting adventure” – that’s how Dianne remembers those days.

So is she one of the lucky ones? Dianne is thoughtful, “So many things you miss, as you think about it.” She was graceful, she had balance, she could use her hands. She still wants to work but wonders, “How can you show up for a job interview with a cane?”

But, Dianne does think she is a lucky one. With her husband, she has a great support system which is very important to her. She adds, “People are very, very kind if you have a disability. They’re curious and helpful and if you get out there and let people know what’s going on, they will try to help you – they will do what they can.”

Congratulations, Dianne, for taking the ride of your life!

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