June 20, 2014

27 Years as a High-Functioning Person with Parkinson’s: What’s Leon’s Secret?

That’s Leon Paparella doing what he loves – leading a Parkinson’s support group. In this case, my support group. I joined the group shortly after my Parkinson’s disease (PD) diagnosis five years ago.

Leon is a highly-skilled and experienced group therapist. He also has had PD for 27 years. Particularly for the newly diagnosed, it’s reassuring to have the group leader who has lived with PD for so long, and who seems to be in great shape physically and mentally.

A month ago, I asked him a question I’d wanted to ask for a long time, "Would you let me interview you for my blog?" He graciously consented.

“For my blog” was certainly one of the reasons I requested the interview. “What’s your secret?” was another.

Was it a special med or combination of meds and supplements? Tennis three times a week? Fasting one day a week? Taking even more curcumin than I do?

The answer was interesting. But first some background on Leon.

Leon the Lion King
You can tell which musical I saw at the Kennedy Center a few days ago. It’s an apt description of Leon, who has shown a fighting spirit in becoming a high-functioning person with Parkinson’s since 1987.

No question -- one of Leon’s survival secrets resides in his DNA: his mother is 95; his father is 96. They still live in their own home.

We’ve heard a lot recently about the 70th anniversary of D-Day. It's also Leon's 70th year, barely. He was born on December 31, 1944.

Leon got his undergraduate degree at Rhode Island College and his master’s in social work at Howard University, which brought him to DC. He's been a resident here ever since.

While in graduate school, he entered psychotherapy as a patient. He felt that his parents were too concerned about him -- too protective -- as he struggled to establish his own independence. He was depressed and troubled by issues concerning the Vietnam War and his failed early marriage.

He describes his own psychological journey and how it has contributed to his inner strength and fighting spirit in an excellent paper, Uncertainty, Parkinson's, and the Support Group. I obtained Leon's permission to republish it as a guest post. Recommended reading.

Leon and Parkinson’s
Although people associate Parkinson’s with the elderly, it can afflict younger people. Leon was diagnosed at age 43 in 1987, but he showed symptoms in his mid-thirties that were misdiagnosed as essential tremor.

During the years when he experienced those undiagnosed PD symptoms, Leon tried various treatments, including acupuncture, biofeedback, diet changes, meditation, yoga, and chanting. He was actually relieved when he got the PD diagnosis. Since most of the "alternative" remedies had failed, he was relieved when levadopa therapy proved effective and he was able to continue his work as a therapist.

Group therapy was always part of his practice, and he was leading more and more Parkinson’s support groups. Leon is a Certified Group Psychotherapist. In the late 1990s, he began an affiliation with the Parkinson’s Foundation of the National Capital Area (PFNCA), an organization that educates, supports, serves, and advocates for the local Parkinson’s community. This affiliation has grown and strengthened over the years.

PFNCA offers this apt description of Leon:
Leon uses his own symptoms, frustrations, aggravations and vulnerabilities to help the people in his care. It makes him an extraordinarily invaluable, double-threat resource, and he gives talks and writes papers on the special impact and challenges of being a member of the Parkinson’s community himself and a staffer at the same time.
Leon’s Secret: It’s Available to Everybody
In my interview, Leon confirmed that after his experience with alternative therapies before his PD diagnosis, his attitude is “been there, done that.” More than anybody I know with Parkinson’s, Leon practices K.I.S.S. (Keep It Simple, Stupid).

He takes the gold standard Parkinson’s med, carbidopa-levodopa. That's it. No Azilect or other PD meds.

No special diet. No exercises classes. No physical therapy.

Having interviewed him and known him for five years, I sensed that something special was key to Leon’s success in dealing with Parkinson’s and life in general. I just couldn't put my finger on what it was.

I’ve said that getting kicked out of law school was the best thing that could have happened to me. I have a sense that Leon feels the same way about receiving his PD diagnosis.

But there was something else that was eluding me. Then I came across a New York Times blog post  by Paula Span titled “Living on Purpose.” That was it! Leon’s secret.

Living Life With Purpose and Passion
Span was given this definition: “purpose reflects a commitment to broader life goals that help organize your day-to-day activities.” Researchers have found that having a purpose in one’s life is associated with satisfaction and happiness, better physical functioning, even better sleep.

“It’s a very robust predictor of health and wellness in old age,” said Patricia Boyle, a neuropsychologist at the Rush Alzheimer’s Disease Center in Chicago. She and her colleagues have been tracking two cohorts of older people living independently in greater Chicago, assessing them regularly on a variety of physical, psychological and cognitive measures.

They have found that the ones with high-purpose scores were 2.4 times more likely to remain free of Alzheimer’s than those with low scores. “It also slowed the rate of cognitive decline by about 30 percent, which is a lot,” Dr. Boyle said.

Purposeful people were less likely to develop disabilities, They were less likely to die.

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Looking at Leon, I see another factor beyond purpose that enhances his life -- passion. All of our group members can certainly sense Leon's passion for helping people with Parkinson’s.

From the interview, I learned that Leon is also passionate about singing. He takes voice lessons and sings in several groups. Leon’s skills as a group therapist seem to come naturally to him. Singing is more of a challenge, particularly for someone with Parkinson’s. But Leon seems to thrive on overcoming challenges.

Reflecting on all of this, I’m sure my purposeful passion for this blog and my garden enhance my health and sense of well-being. In any event, I enjoy both a hell of a lot more than watching TV.


Norton said...

Inspirational, a kick up the behind to get on with life and not to lay down and. Give in. Leon's brilliant as are you John.
Thank you both.

John Schappi said...

Brilliant I'm not! But thanks anyhow.