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Families living passionately with
Parkinson’s disease

By Karen Hess, Special to Today's Family

We’ve all heard the mantra “health is everything” but most people have no idea how they would react upon learning that they had a chronic life-changing illness, like Parkinson’s disease. Not only does a patient have to grapple with a diagnosis, but also often struggles with when to reveal their illness to family, friends and co-workers, all while searching for the grit determination to remain as healthy and active as possible.

Pictured: Arman and Jamie Askari with their three children (l-r), Alexa 17, Jacob 10, and Amanda 13.
Photo credit: www.nancywilliamsphotography.com.

Parkinson’s disease is a chronic neurological disorder with symptoms that can progress from mild tremors to incapacitation, with approximately one million people in the United States living with it. Parkinson’s progresses over many years as brain cells that produce the neurotransmitter dopamine slowly waste away. Without dopamine, nerves have trouble sending messages, and muscle movement becomes erratic and harder to control. While the average age of onset is 60, an estimated five to ten percent of people with Parkinson’s experience onset at age 50 or younger. Television and film star Michael J. Fox was diagnosed with young-onset Parkinson’s in 1991, though he did not share the news publicly for another seven years. Committing himself to a campaign for increased Parkinson’s research, his Michael J. Fox Foundation not only has raised much-needed funding ($88 million in 2012), but also has transformed the amount of information and support for Parkinson’s patients and the awareness of the disease. An actor, author, activist, and family man, Fox’s most inspiring role may be as an “optimist,” sharing his hard-won perspective that helps him see challenges as opportunities.

Like Fox, Arman Askari of Orange Village, received an early-onset diagnosis several years ago, and his determined journey has taken his family to a place of forward-moving gratitude. A prominent cardiologist, Arman eventually chose to retire from private practice, but he continues to use his medical expertise through Premier Health Advocates, a company he formed in 2010 to help provide education navigating an ever-increasingly difficult health care system. Since Arman says “most doctors never experience what it’s like to be on the other side of the sheets,” he also lectures at medical schools and physician groups, reminding doctors of the paramount, but easily forgotten lessons of empathy, listening and taking time.

“We view this as a positive,” says Jamie Askari, Arman’s wife and mother of their children, Alexa (17), Amanda (13), and Jacob (10). “Our kids have learned so much about patience, empathy and compassion. And we see things with humor, like laughing that we have ‘preferred parking’ when using our handicap sign.”

To help raise funds and awareness, Jamie founded Parkinson’s Pals, along with several friends and family members. In its first few years, the organization has already been established as a 501-C3 non-profit and has raised more than $150,000 at its annual “Pamper Yourself for Parkinson’s,” a spa-shopping-educational event. A “Team Fox” affiliate, Parkinson’s Pals was honored last year in New York City at a Team Fox MVP Award luncheon. “We have 1,600 Team Foxes around the world raising funds and awareness,” says Kristina Lopez of the Michael J. Fox Foundation. “They are our people on the ground, our road warriors.”

“My motto is ‘it could always be worse’,” says Arman. “It’s hard to lose autonomy, and although I sometimes feel like a prisoner in this body, in many ways I feel much freer, like the freedom to spend much more time with my family.”

New research indicates that Parkinson’s patients may also find a newly-found freedom relating to creative abilities, such as painting and writing. Published this year in Behavioral Neuroscience, Rivka Inzelberg, M.D. a professor in the department of neurology at the Shaba Medical Center in Ramat Gan, Israel, identifies two underlying factors--levodopa and dopamine agonists, often used together in Parkinson’s treatment to improve motor control. It is thought that the increased dopamine may be involved in brain pathways that “awaken” creativity.

Artist Allan Goldberg of Pepper Pike may be proof of this research, considering he’s created more than 100 paintings in the last three years. He was diagnosed with Parkinson’s approximately ten years ago and ultimately retired from a family-run real estate business, leaving a void in his life. Allan’s wife of 54 years,Terry, urged Allan to try painting, and she now calls his found talent “a reawakening, a personal expression and creative passion.” Allan says he feels a part of himself in each painting, for example, as if he is riding the horse in the depiction of a cowboy, like he used to in pre-Parkinson’s years when he was nationally-recognized in the horsing community and felt at home on a horse. Now he feels at home with a brush in hand, where that same passion is directed to his canvas several hours daily. While he paints, he is free from tremors and is able to focus completely. His work will be on exhibition at University Hospitals in May 2014, where sale of his paintings will go directly to research at the Michael J. Fox Foundation.

Pictured: Allan Goldberg discovered his passion for painting after his Parkinson's diagnosis.  The artist's work will be on exhibit May 2014 at University Hospitals.

With four adult children and 11 grandchildren to support them, the Goldbergs speak of what they have gained instead of how they cope with an illness, and Allan actively encourages other Parkinson’s patients to get out and be active, demonstrating his motto to “use it or lose it.” Their daughter, Kathy Goldberg, says “education and information are power.” With a master’s in education specializing in counseling and psychology and as a licensed independent social worker, Kathy spent 15 years in practice helping others to feel empowered and in control. Now she applies what she knows to her own family. “This unites, connects and makes us stronger,” says Kathy. “It’s a great lesson to teach our children, how to come together and care for each other, no pity, no fear. Everything I admired about my dad is just magnified--his integrity, his strength, his grace, his empathy.”

Alexa Askari, age 17, also feels her family can work through anything together, but learning this was a process. “I didn’t used to understand and was angry at first when I couldn’t tell anyone,” says Alexa. “Now we are all even closer, and I realize when my dad could use my help.”

Arman and Jamie encourage others facing an illness to be open and honest with children. Concealment often is as stressful as the disease itself. “If a kid asks me, ‘why do you walk funny?’ I explain ‘I walk like a soldier sometimes because of my medicines,’ and they understand,” says Arman. “If you have a positive attitude, no one gets uncomfortable, but if you’re uncomfortable, others will be.” Arman also advises other families to involve kids with helping and for the person with Parkinson’s to communicate when help is needed.

Kathy adds, “When you talk about it, it becomes real, you normalize it. Choose to reach out. Ask your doctor where you can find support. Join a Parkinson’s group. There are people out there to help you find the fire inside of you to keep going, to move forward.”

Parkinson’s disease connections:
www.michaeljfox.org

Cleveland:
www.parkinsonspals.org
www.shakingwithlaughter.org
www.afgoldberg.wix.com/paintwithparkinsons

               

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