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The Parkinson's Mailbag
Choosing the Right Doctor
By Sheryl Jedlinski
I was 44 years old when I first noticed a slight tremor in my left pinky. My internist attributed it to my being "a middle-aged woman about to become an empty nester." Why then, I wondered, in the immortal words of Jerry Lee Lewis, didn't I see "a whole lot more shakin' goin' on" among my friends?
A few months later, with my tremor worsening, I went to a general neurologist for a second opinion. His diagnosis - based on my age - was essential tremor. He obviously had not read his office copy of People magazine featuring Michael J. Fox's "coming out" story on the cover (after all, Michael was only 30 when he was diagnosed!).
My extensive online research had already convinced me I had Parkinson's, and I set out to find the right doctor to guide me on what I knew would be a long, difficult journey. I needed someone with a good bedside manner who was on top of the latest research and treatment strategies. Not knowing where else to turn, I called PDF for a referral. What I got was "a match made in heaven."
Research says that the better the relationships patients have with their doctors, the more likely they are to follow their treatment plans and improve their health and/or quality of life. In this column, I address several ways to find the right doctor for you.
MDS or general neurologist?
While there is yet no cure for Parkinson's, there is a growing line-up of medications that provide significant, long-term symptomatic relief. The challenge for doctors and patients is to decide together when to introduce which PD medications and, as the disease progresses, how to adjust the combination and doses of treatments to optimally control PD symptoms and to minimize side-effects.
This is where movement disorder specialists (MDS) - neurologists who have additional training in this subspecialty, which includes Parkinson's - have an advantage over general neurologists. Because they treat a greater number of patients with Parkinson's, MDS tend to be more experienced in diagnosis and treatment than do most general neurologists or internists. Often connected to major medical institutions, they also may be involved in research and/or teaching, which keeps them up to date with clinical trial opportunities for which their patients may be eligible.
Although you may have to travel farther to find a MDS, most people with Parkinson's say it is worth it - especially because you usually need to make the trip only two or three times a year. Your general neurologist can continue to take care of your overall healthcare needs, and consult by phone, fax or mail with your MDS as necessary.
Finding your doctor
I have found through experience that there are several ways to find a doctor with a good reputation to treat your Parkinson's. First, ask friends, family and co-workers for referrals. Second, attend educational sessions and support groups for people with Parkinson's and their families, and ask for recommendations.
Another approach is to go to the experts, by telephone or online. Several of the national Parkinson's organizations maintain lists of specialists. Start by calling PDF (800) 457-6676; the American Parkinson Disease Association (800) 223-2732; or the National Parkinson Foundation (800) 327-4545.
Be sure to check which physicians are in your health insurance network and whether they accept Medicare. And, lastly, contact your state department of insurance to see if the doctors whom you are considering have any complaints filed against them.
The initial meeting
Review the referrals that you have obtained and the information you have collected about each doctor. Schedule an exam with your top choice and prepare written questions to bring to your appointment. The box on this page provides a list of questions to ask yourself after the appointment to help you decide if you have found a doctor who is the right fit.
Whatever may be the diagnosis of the first doctor, you may want to seek a second opinion. A good doctor will never be offended by this, and may even provide you with a referral. And if you like this first doctor, you can return to him or her to continue treatment after obtaining a second opinion. (Make sure you confirm that the second-opinion visit is covered by your insurance.)
On BrainTalk, an online support group for people with Parkinson's, a man named Todd made an astute observation: "You either have a good relationship with your doctor or you don't. You have to trust your physician and feel like they respect you as a person and a patient."
Sheryl Jedlinski is a self-employed writer and desktop publisher. She is the Communication Coordinator for the Parkinson Pipeline Project. Sheryl is married, has two adult sons and lives in Palatine, IL.
8 Questions to Ask
Does Your Doctor:
• Put you at ease when discussing your concerns?
• Appear to be a good listener, observant and attentive?
• Take your opinions and questions seriously?
• Answer questions to your satisfaction?
• Encourage your input into decision making and treatment?
• Allow ample time for you to ask questions?
• Seem open to alternative treatments?
• Invite email contact between visits?