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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Category: advocacy

Olly Olly Oxen Free! Is there a Movement Disorders Clinic hiding near me?

Terri Reinhart

They're hiding out there somewhere. As long as you know what you're looking for, some may even be in plain sight. For many patients with Parkinson's, the rare neurologists who truly understand Parkinson's and even rarer Movement Disorder Clinics will continue to elude them. 

We're lucky here. We have a number of sanctuaries where these doctors can remain safe and continue adding to their knowledge. They are rarely seen in the wild, or even outside their sanctuaries, not because they can't handle the freedom, but because they are kept too busy to be much more than captives in their offices. 

Because they are so rare, many people will drive hundreds of miles just to see one. Other people will never have a chance and so they take their chances on being seen and treated by doctors who are general neurologists or family practitioners. It's not always a bad thing. There are some less specialized doctors who either understand Parkinson's or are willing to get the information they need from one of the sanctuaries. 

There are also the other stories - a patient who is told they don't qualify for DBS surgery because they aren't bedridden yet; a doctor who prescribes a large dose of Sinemet in an odd combination (10mg carbidopa/250 mg levadopa) to a new patient who then goes through agonizing nausea and vomiting from their medication dose; a doctor who tells a new patient that if this dose doesn't work, double it. Some doctors think they know enough, but don't. My father's general practitioner gave him the diagnosis of Parkinson's disease, then refused to refer him to a neurologist. My first neurologist told me my symptoms were just like Parkinson's, but that's not what it was. He didn't refer me to the Movement Disorder docs even though they were just down the hall. 

Treating Parkinson's disease, finding the right combination of medicines and other therapies, is an art. I consider my neurologist to be a master artist as well as an amazing doctor when it comes to how she handles my treatment plan. I know I'm privileged.

There are many reasons patients may not be able to see a Parkinson's specialist. Some patients don't have adequate insurance to pay for a specialist. They might live where there are no Movement Disorder Sanctuaries.. I mean Clinics. They might have one close by, but it is so busy, their visit must be scheduled months in advance. 


Movement Disorder Specialists, we need more of you. We think it would be nice for you to have a smaller caseload, fewer patients to keep track of and treat. I'm sure you'd enjoy being in the sunshine now and then. It would be nice to see you out in the wild - as well as in smaller cities and more rural areas.

Some sources say we are facing a shortage of doctors. Others say no, it's not a shortage of doctors, we're just not efficient. We should be using more Nurse Practitioners and Physician's Assistants. A number of sources feel we have too many specialists and not enough general practitioners. Too many specialists? I don't think so. When a specialist has such a high caseload, you have to call at least 4 months in advance to make an appointment, I say there aren't enough. 

When patients live too far away to go to a specialist or, if they go, they drive hours each way, we need to find a better way to serve those people.  Asking in our support group about how far people drive to see their Parkinson's neurologist, the answers ranged anywhere from 20 minutes to 7 hours one way.

We need General Practitioners, too, of course. They need to be the ones who really get to know their patients. As they are seeing patients for all sorts of ailments, they also need to know when to refer them to someone else. How can one person be a specialist in every possible disease and disorder of the human body? It's just not possible. Specialists help with the efficiency of modern medicine. At the very least, we need Nurse Practitioners and Physician's Assistants who can specialize in different areas. 

We don't have the answers yet. Like most people in the US, I'm dreaming of the day when we have health care for everyone, the day when income inequality isn't so completely off balance, the day when college tuition and medical school tuition is not so prohibitive and school loan repayment doesn't threaten to bankrupt average people and become one more reason for the high cost of health care.

Until then, keep your binoculars handy just in case a shy, elusive movement disorder specialist happens to be spotted in your area. 

And here is a handy guide for locating them:

Movement Disorder Specialist Finder    


The PCORI Experience - The Key

Terri Reinhart

I arrived home this morning from attending the first Annual Meeting of PCORI - Patient Centered Outcomes Research Institute. Over the next week or so, I'll be posting some short articles about this experience. They will probably be sort of random, working like my mind and memory work as I try and process all the information I received. 

Here is the first:


It hangs from my coin purse because I don't take my keys with me when I travel. The plain silver key has not been cut and doesn't fit any lock. It's a reminder of all the people who do not have keys. It's a reminder of my obligation to speak for those who do not have keys.

We were listening to a panel on the topic of Engagement of Patients and Other Stakeholders in Research. There were three groups represented,but Loretta Jones will be the one I don't forget. She and Dr. Clete Kushida spoke about their work with Healthy African American Families. I encourage you to look at their website. Loretta recently received the Honorable Diane E. Watson Community Service Award from the United Nations for her work addressing disparities in health care.

Which brings us back to the key. While Dr. Kushida and Loretta were speaking, we were handed keys. Loretta asked us about our own keys. What do they open? House, car, safety deposit box, bicycle lock, a gym locker; these were a few of the answers given. Keys represent access and assets. A house key means we have a place to live, an anchor. A car key or bicycle lock key means we have the ability to easily move out of our area and see more of the world.

There are other keys which are not visible, but are important: access to health care, access to transportation, access to education. This list is just a beginning. Who are the people without keys? The homeless, the uninsured and underinsured, those who don't have transportation to a doctor's visit, those who don't have access to healthy food, those who do not have an advocate.

At the PCORI Annual Meeting, there were scientists, clinicians, nurses, social workers, health insurance representatives, lawyers, patients, patient caregivers, patient advocates, and more. Who, among all these groups, is going to speak up for those who don't have keys?

It's the responsibility of each one of us. As a patient advocate and patient reviewer for PCORI, what can I do to bring attention to the needs of people who do not have a voice, those who are marginalized by being part of a minority group or stigmatized by a health condition? Can I look at clinical studies and try to sort out whether and how the studies will help those who have no voice - no keys?