With Parkinson’s, the right care team can be a game changer
Managing a chronic illness requires teamwork, columnist Jamie Askari says
When I’m not busy writing my weekly column for Parkinson’s News Today, I’m the managing director of a small medical advocacy organization in Cleveland. In this role, I’ve learned much about our ever-changing healthcare system and the importance of having a dedicated team to manage all aspects of chronic illness.
The term “team” always prompts the mental picture of my son on his high school football field — a group of strong, young men working together toward a common goal. Being a team player takes dedication, commitment, and hard work.
A medical team is actually very similar. Like pieces of a puzzle, each individual care provider is a necessary element. These may include physicians, medical residents and fellows, physical therapists, nurses, dietitians, speech therapists, occupational therapists, mental health professionals, and the list goes on. The puzzle wouldn’t be complete without all of these remarkable individuals.
I have lived in the Parkinson’s world for almost 15 years now. My husband, Arman, was diagnosed in 2009 at age 38 with early-onset Parkinson’s disease. Looking back, I had no idea about the importance of the medical team and the vital role it would eventually play in his care.
After his diagnosis, Arman was offered a number of medications. But as a young family with three small children, we knew we needed more. We needed options for new treatments, medication adjustments, possible procedures or surgeries, and clinical trials.
Fortunately, a brand-new neurologist at the Cleveland Clinic was precisely what we were hoping for. He offered us hope and empathy and came up with many options for treating Arman. He’s guided us through some of our worst times as well as our best. We’re so grateful that he’s not only our neurologist but has also become a personal friend.
We visited the Cleveland Clinic last week for Arman’s second Botox (onabotulinumtoxinA) treatment (more on that in a future column!). Even though it’s stressful to visit such an overwhelmingly large facility, we always feel right at home. In addition to our neurologist, we’ve gotten to know many of our nurses, who greet us with a warm hug. We also love to chat with the new fellows and learn about their experiences. They all seem to genuinely care about us; it’s impressive to get this type of care, especially at such a large institution.
When choosing your Parkinson’s care team, it’s crucial to find the right fit. It may take several tries, but don’t settle. The right team can truly make all the difference, so it’s wise to try on many hats to find the best one for you.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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