Bridging the Gap: Insights & Strategies From Doctors Who are Patients

The World Parkinson Congress is about sharing information across boundaries – geographical, scientific, professional and cultural. The exchange is critical to moving understanding of Parkinson’s forward for all stakeholders in the global PD community: researchers, physicians and therapists, and patients themselves. Dialogue spurs innovation, and two groups who can most benefit from more dialogue are doctors and patients.

Over the past few months I have had the opportunity to speak with a number of people that have the unusual distinction of belonging to both groups, physicians who are themselves living with Parkinson’s. (See my interviews with Dr. Yoshiko Okado and Dr. David Blatt in the PD Outliers series) My discussions with them inspired me to contact Eli Pollard, director of the WPC, and propose that we pose a series of questions to other physician-patients for the WPC blog. We approached two doctors who are well known advocates in the PD world: Karen Jaffe, OB/GYN, founder of Cleveland’s InMotion center and recipient of the International Parkinson’s Community Service Award; and Soania Mathur, MD of Ontario, Canada, a family practitioner and founder of Designing a Cure. Their thoughts, which touch on everything from the importance of patient engagement to the limits of doctors’ perceptions, to how Parkinson’s treatment can become more holistic, follow below.

What is one piece of knowledge you gained from your career as a medical professional that you have found most useful in dealing with your Parkinson's?

Soania Mathur: That everyone’s outcome is different and that those people who are actively involved in their management of their disease have the best quality of life. Being an active participant in your management, including following medical advice, adhering to the guidelines set out for you by your medical team, taking control of other variables such as optimizing nutrition and exercise – these all contribute to better outcomes for patients.

Karen Jaffe: We are in this business to heal those suffering around us.  To do so, we need to recognize what is not working and try to come up with innovative solutions. There are two great examples of recent innovations: The first is the coordination of care that now exists for those families dealing with a cancer diagnosis. In cancer care, a team of specialists work together to make resources available from the point of diagnosis. This serves to keep patients armed and ready to tackle what is ahead of them. The second innovation is the grassroots efforts by patients to advance HIV/AIDS therapies in the gay community, which has been highly effective. These examples highlight how we don’t have to live with the status quo.

What improvements would you like to see the medical community make in the treatment of PD?

Karen Jaffe: This follows from the first question. I would like to see an improvement in the collaboration and coordination of care for PwPs.  Regardless of where people live, they all tell the same story: the Movement Disorder Specialist (MDS) sees a patient; sometimes, but not always, a referral is made to a physical therapist (PT) who may or may not know anything about PD, who sees the patient only as long as the insurance will pay and then the PwP is on his or her own.  There is no easy or expected mechanism for an exchange of information.  I strongly believe that the medical community should invest in well run community centers for PwPs and their care partners so that from the point of diagnosis they are in charge of their well being. I like to refer to this as the “Continuum of Care”.  From the vantage point of InMotion, our PD community center in Cleveland, we see how PwPs are doing day in and day out, week after week, and yet there is no formal system to share this information. Just as community based exercise programs serve as a resource for the movement disorder specialists and the physical therapists, providing Standard of Care exercise opportunities, the MDS’s and PTs must serve as resources for the community organizations, exchanging information about these shared clients in an efficient and respectful way.

Soania Mathur: I would like to see a more thorough and holistic approach to the treatment of Parkinson’s.  We each have our own unique presentation of this disease. We differ in terms of age of onset, symptoms, progression, prognosis and response to treatment. Therefore, the approach to treating this disease should be tailored to each patient. A team approach with healthcare professionals and treatments that are relevant to each patient’s particular needs–keeping in mind that the approach must change as the disease progresses–would be optimal.

What is the one thing you wish doctors better understood about patients?

Soania Mathur: To always remember that for patients it’s all about quality of life, but that optimizing quality of life is not always in line with treating the disease. For example, in the case of Parkinson’s, it may be considered a positive result if you give a patient a medication that reduces their tremor. But is it really a success if the medication you give them results in side effects like dyskinesia, which is worse than the tremor itself?  Or is it a success if it wasn’t tremor at all but depression that was actually negatively impacting their life experience?

Karen Jaffe: Doctors, unless they are patients themselves, are in the dark about the lengths many patients will go to “look good” when they come in for an appointment.  Patients want their doctors to be happy with them, and so patients will often try to put their best foot forward for the 30-60 minute appointment.  They take big steps, they swing their usually silent arm, they speak up enough to be heard. Once at home, the shuffling gait, soft voice, non-swinging arm all return.

What is the one thing you wish patients better understood about doctors?

Karen Jaffe: Patients should understand that doctors don’t own magic wands.  If there were such a thing, your doctor would be the first in line to get it.  Physicians are people who care and who would love nothing more than a cure for what ails you.

Soania Mathur: We don’t know it all! We also depend on our patients’ input. The ultimate goal for physicians is to do what is in the best interests of their patients, to make management decisions that will have a positive impact on their patients’ lives. Parkinson’s disease is complicated though. It is pervasive in its impact, and there are no biomarkers that can help guide treatment. So in Parkinson’s disease in particular physicians need their patients to relay to them relevant information about symptoms, side effects and how they vary with the timing of medications, quality of life goals and so forth in order to make management decisions that have the most significant impact. 

Has your view of what it means to have a chronic condition changed at all as a result of your PD? What has surprised you that you would not have expected from your medical training?  

Karen Jaffe: Of course, I never saw PD coming. So I was just as surprised as anyone else.  I found it unbelievable that I could go through medical school and come out not knowing ANYTHING about a disease as common as PD.  I didn’t expect to find myself on the other side of the patient fence, and it is not a place I like to be. But that being said, I have a perspective that most do not have.  From the first day I wanted to know what I could do to advance research towards finding a cure. This was somewhat surprising because I was not involved with any research projects as an OB/Gyn.  But, as a 47 year-old, I was too young to have a disease usually affecting people over 60. 

Prior to getting this diagnosis, I also would not have expected to find that physicians can and do play a role in creating and perpetuating the stigma that is sometimes associated with the disease.  They, of all people, should understand how damaging stigma can be.  In the case of PD, I have witnessed the following statements: “You don’t want to go to support groups. Seeing people further in the disease could be hard to take.”  “If you were my father, I wouldn’t give you medications. Who wants to take meds the rest of their lives?” I also heard of a pain/anesthesia specialist who when faced with a consult that looked like a PD diagnosis, didn’t discuss it but passed the buck to another physician because he didn’t want to have to be the bearer of bad news.  My own neurologist had to have his arm twisted to tell me.  So from these kinds of statements, what is a patient to think except “Holy Shit”?

I hear these and other such stories all the time.  I am shocked that I have colleagues who know no better.

Soania Mathur: I learned in my medical training all the facts about chronic illnesses – their clinical symptoms, course of disease, prognosis and treatment options. What I didn’t recognize as readily was the pervasiveness of a chronic disease; how it impacts patients not only on a physical level, but on an emotional, social and spiritual one. Not to mention the impact that it has on the family and extended social circle.

Do you have any tips or tricks for getting the most out of the healthcare system? 

Karen Jaffe: To get the most out of the health care system you must become a self-advocate.  Understand your disease; familiarize yourself with your meds and how they are working for you; bring notes and questions to your appointment so as not to forget.  As a self-advocate, be sure to ask your PD team members “How am I doing?” and “What can I do to be at the top of my game?”  The most important decision you can make is, if it is not working out as a working partnership, you are free to find another physician. Period.

Sonia Mathur: You must build your healthcare team, which not only will include your movement disorder specialist but may include other healthcare providers such as a physiotherapist, an occupational therapist, a massage therapist, a social worker, a nutritionist, speech therapist, etc. Each member of the team will vary according to your symptoms but must be coordinated by you or your care partner with the ultimate goal being quality of life.

Is there any special thought, sentiment, or piece of advice you would like to give doctors or patients based on your unique position?

Soania Mathur: For patients, you don’t need an MD in order to become an expert in your disease. Educate yourself, arm yourself with knowledge, communicate your needs to your healthcare team and coordinate your care. Take control over those variables that you do have control over, such as stress management, nutrition and exercise. Always work towards your quality of life goals. You can learn not just to live well with this disease, but to thrive despite it.

For doctors, always keep in mind that in Parkinson’s disease, it really is all about quality of life for patients and their families and those quality of life goals differ from patient to patient depending on many factors such as age and stage of disease. Only your patients know what will truly optimize their quality of life, so partner with them in your management decisions.

Karen Jaffe: Because I am also a physician, every week I have PwPs and their family members reaching out to me when they get the diagnosis of PD.  Sadly, so often they tell the same story: They are shocked and often in disbelief. They are often handed a prescription of Sinemet and instructed to return in 3-6 months. I am often told that the MDS tells them  “There are worse diagnoses to have…PD is one of the better ones”.

I hope I never have this story told to me ever again.

The manner in which a diagnosis is delivered matters. It affects the immediate emotional response of patients as well as how they accept, adjust and adapt to their new identity. Telling them that there are “worse disorders” isn’t helpful.  Physicians should give a clear indication that they are prepared to partner with their patients to help them transition from a healthy state to their given diagnosis. Delivering the diagnosis with mindfulness and understanding and with an appreciation for the patient in front of them will change the way that patient looks at the day at hand and at the rest of his or her life.

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Pamela Quinn is the creator and host of the PD Outliers interview series, in which she speaks with outstanding people with Parkinson's to discover the habits, tricks, and treatment strategies that allow them to excel. Pamela has had Parkinson's herself for over 20 years, and her poetry-dance piece "Welcome to Our World" was the co-winner of the WPC 2010 Video Competition.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®