Parkinson's fight inspires couple to help others

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COLUMBIA, Mo. (AP) — Patsy and David Dalton were married for 10 years before a third partner entered the relationship. Twenty years later, the couple is still going strong, even with David's Parkinson's disease.

This year marks two decades since David was diagnosed. It's a milestone year for many things as he turns 65 and he and Patsy celebrate 30 years of marriage. Now, the couple is able to reflect on these milestones with people who understand what they're going through in support groups the Daltons help organize.

At the time of David's diagnosis, doctors didn't know much about Parkinson's compared with what they now understand, and David was told his rigid muscles and loss of dexterity might also be a brain tumor or an issue with his thyroid, rather than Parkinson's.

"Um, we'll take thyroid," Patsy recalls telling the doctor jokingly. That same day, thyroid issues and a brain tumor were weeded out by a few tests.

David was only 44, meaning he had young-onset Parkinson's. But he wasn't having problems with tremors or shaking at all, so the couple didn't understand the diagnosis at first.

"We went home and looked it up in the dictionary, and it said 'progressive nervous disorder,'" David said. "The word 'progressive' seemed to be in much larger print than 'nervous disorder,' even though they were all the same size. It just jumped out at you."

It wasn't very long after diagnosis that the couple attended a Parkinson's support group in Columbia that was, at the time, organized by Boone Hospital Center. It was a chance to connect with other patients and caretakers for informational and social purposes. That interaction is, to this day, a reason that members of the Lake of the Ozarks and the Columbia support groups the Daltons now organize stick around.

David was able to continue working as a certified public accountant for about one year after his diagnosis before he had to call it quits. He had developed a tremor in his right knee that was, at times, enough to bang against the bottom of his desk incessantly while he was working. It complicated his work on tax returns or other documents with his clients.

After leaving the accounting world, David worked for a few years as the chief financial officer for a construction company — a high-stress job that also took its toll.

"Stress is a big enemy for Parkinson's," Patsy said, explaining how the muscles in her husband's hands would often tighten up almost into a fist from stress brought on by work.

Three short years later, David had to stop working. At 51 he took disability even though he loved accounting and his jobs.

"Parkinson's is a different disease for every person," Patsy said. "It's extremely individual. You can't say any one person is going to progress in a certain way. We know people who have had Parkinson's for 30 years and they're still playing golf, and we know people who have had Parkinson's for two years and they're gone now."

Patsy and David consider themselves lucky. Though David was diagnosed early, he has gotten by very well the past two decades, especially since he had deep-brain-stimulation surgery — a relatively common procedure for people with Parkinson's — in 2004 that enhanced his quality of life. The surgery involves the insertion of electrodes into one or two parts of the brain, powered by an electrical stimulator that's implanted in the chest.

Many of the couple's friends through the support group have mulled having the surgery. It's one of many things the Daltons like to speak about when possible, using their experiences as their credibility.

Parkinson's is often associated with tremors or dyskinesia, the involuntary movement of the arms, leg or whole body. Actor Michael J. Fox has put a public face on the dyskinesia Parkinson's causes, but the reach of the disease goes deeper. David, for example, shows signs of Parkinson's affecting his speech. It has been that way for more than a decade now, he says — his voice is softer, his rate of speaking is different and he has lost much of his ability to show emotion and give inflection in his voice and his face because of a Parkinson's characteristic called masking.

A few months after David's brain surgery, the couple decided to move to the Lake of the Ozarks area. Their friends were all still working, David was on disability and the time was right for Patsy, a former Boone County commissioner, too.

It wasn't long after the move that the couple decided to start a support group for the lake area. They had attended conferences in St. Louis and Kansas City and had some good literature and connections, so they gave it a shot. New friends from all over the lake area and even a little bit farther south traveled for the meetings. Once a month, about 25 to 30 people still pop in to the bring-your-own-lunch meeting for some fellowship and sharing. The mailing list has more than 50 addresses almost 10 years later.

In 2011, the couple moved back to Columbia for family reasons and for David's need for better medical care. They started to revisit the Columbia support group a few years before the move and continued with both groups after the move back to Columbia. Their work hasn't gone unnoticed — the Tribune gave the Daltons a Hero Award this year for their efforts helping others with Parkinson's.

The Daltons stress that the support groups aren't just for the person with Parkinson's, but for the caregiver, too.

"While you're going through all of the stages of acceptance and grievance, your spouse is a little bit behind," David said, adding that the caregiver or spouse doesn't have time to catch up to the patient because the patient is always changing.

Sharing troubles and experiences with others is important to the couple and also is recommended by a local neurologist.

Irving Asher, neurologist and movement disorders specialist at University Hospital, said one of the best ways to learn about the disease is to listen to the experiences of other people who have been on a similar road. As a rule, Asher said he recommends patients attend support groups.

"These are people who care about each other," Asher said. "There is education going on, and there is also a sharing of emotion and strength. There's a lot to be said for that."

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Information from: Columbia Daily Tribune, http://www.columbiatribune.com

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