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Parkinson’s from the View of a Medical Educator: An Introduction

Parkinson’s from the View of a Medical Educator: An Introduction

The beginning

On the morning of March 11, 2014, I received my Parkinson’s diagnosis.  The good news that morning was my diagnosis explained all of the health issues I had from the previous three years.  A partial list of maladies included stiffness in right hand and neck, swallowing defect, loss of strength/tone of my voice, and a slight right arm tremor. The bad news was that I became one of ~60,000 new cases of Parkinson’s that are diagnosed each year in the United States.  This adds to the more than one million people who currently are living here with Parkinson’s.

A Parkinson’s perspective

Parkinson’s is a neurodegenerative disorder, which means the cells in our brain called neurons are dying at an abnormal rate.  There are several other well-known and especially intimidating neurodegenerative disorders including Alzheimer’s, Amyotrophic Lateral Sclerosis (ALS), and Huntington’s disease, and they are listed in decreasing order of occurrence, respectively.  Parkinson’s is the second most prevalent neurodegenerative disorder, only behind Alzheimer’s.

The Parkinson’s team

Since the day of my diagnosis, I’ve met some fantastic, remarkable people, people with Parkinson’s, their care partners (“Coaches”), Physical Therapists, Occupational Therapists, Speech-Language Pathologists, Movement Disorder Specialists, Neurologists, Social Workers, Personal Trainers, and just other people wanting to help.  We are all united by Parkinson’s, how it uniquely affects each person and their extended family, friends, colleagues, and the variety of professionals we use to help manage the disorder.  Notice I do not like to use Parkinson’s and disease together; not only is it somewhat redundant (at least to me the name Parkinson’s itself describes a disease) but it offers me some solace and control to be able to simply say, “Yes, I have Parkinson’s.”

Linking my life to Parkinson’s

I am a scientist [biological chemist that for three decades studied hematology (biology and diseases of the blood and blood-forming organs)].  Additionally, I am a medical educator (have taught hematology and immunology to medical students and health-career-focused undergraduates for many years).  I am also a patient and want to live my life as best I can while under the influence of Parkinson’s (in our Neurology block I’ve been ‘presented on stage’ to 165 medical students several times).  I try to be an advocate and voice of reason in helping others manage and deal with their own Parkinson’s.  Finally, I have been told that I am a translator of science. I will try my best to describe the complexity of the science and medicine of Parkinson’s into words all can better understand. It is indeed an honor to join everyone else at ParkinsonsDisease.net and help contribute to the wellness and knowledge of this growing community.

Be hopeful and stay positive

Reflecting on a different disease Steve Gleason said: “Life is difficult. Not just for me or other ALS patients. Life is difficult for everyone. Finding ways to make life meaningful and purposeful and rewarding, doing the activities that you love and spending time with the people that you love – I think that’s the meaning of this human experience.”  We are a community united by Parkinson’s. Staying hopeful and being positive allows one to challenge the ever-present Parkinson’s.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The ParkinsonsDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • JeffD
    7 months ago

    Thanks for this post, Frank. I am an educator and scientist as well. I teach behavioral neuroscience (biopsychology) for undergrads and graduate students and maintain a modest research program studying the biological basis of sleep and pharmacology.

    My 78 year old father has had PD for over 20 years so I was always monitoring my own symptoms but wasn’t worried. But I noticed when I was 48 my gait was changing and my then wife said I was “stiff” and “shaking” from time to time. She also noticed that I couldn’t smell as well as I used to. I was finally diagnosed just last year but I have known for much longer. (I am single now, PD may have contributed to our divorce, but my ex and I are on good terms)

    I am still a full time professor and my symptoms are mild and well controlled by the typical meds. I do worry about my verbal fluency as lecturing is what I do. I am a little worried that I won’t be able to teach full time for many more years and I am only 51 so am not close to retirement. Just wondering how you have adapted as a fellow educator. Thank you again for posting! I just joined PD.net yesterday (ha!) so am a newbie.

    Jeff

  • Frank Church moderator author
    4 months ago

    Jeff,

    greetings from Chapel Hill? How did your spring semester work out for you? We always have graduation ceremonies on Mother’s Day weekend, so for me, the stress of the end with the joy of the graduation ceremony always challenges my Parkinson’s. Let us know how you’re doing. Best wishes, Frank on behalf of the Parkinsonsdisease.net team

  • JeffD
    3 months ago

    Hi Frank!

    Spring semester went well! I taught two courses on Sleep and Chronobiology. Then I even taught a summer school “Maymester” and that went fine also (that course was “Biopsychology”). I know students are looking at my tremors but only my graduate students know of my diagnosis. Interestingly, one of the chapters in biopsychology text is “movement” which covers basics of movement and basal ganglia and cerebellum input, etc. But the chapter does talk about movement disorders as examples of dysfunction. I have wondered if some of the more astute undergrads are figuring it out. But some days my symptoms are easy to hide. I know that is a luxury of being in the honeymoon stage.

    Thanks for checking in, Frank! Sorry for the late response! Hope all is well at UNC-CH!

    Jeff

  • Frank Church moderator author
    7 months ago

    Jeff, Thank you for your note. I begin by saying I’m so sorry you have Parkinson’s.

    Let me start by giving you some background in my career correlates to you let. For 30 years I had NIH funding and other national agencies to support my research group in hematology and thrombotic disorders. Over the same time, I’ve taught in the school of medicine, and in 1996, I created an undergrad biology course on blood diseases. I enjoy teaching, and I appreciate it a lot. Weaving in and out of the same timeframe I was a graduate program Director for ten years and had been on the medical school admissions committee for 20 years. However, this is s academics, and we wear a lot of different hats.

    Based on the current theory of the development of Parkinson’s, I’ve probably had it since my early 40s. I’ve lived with it knowingly for about six years, and I will be 66 years of age this summer. Beginning July 1, I start our phased retirement plan going down to 50% effort, where I will be just teaching medical school and my undergrad biology course. I’m retiring for my health to spend more time exercising, which is the only thing known to slow down the progression of Parkinson’s.

    Regarding your voice, I have a similar problem. My spoken voice is much weaker than it used to be, and I’ve never been a loud speaker. I would recommend you talking to your neurologist and have them send you to a speech pathologist for the course named LSVT LOUD.

    Managing career and life in the presence of Parkinson’s, and working full time is not a trivial pursuit. The stress of dealing with the disorder and the consequences of it over time can erode your confidence in yourself. I have had a good career with many successes, and I cannot imagine anything else in my job. I have three years left of teaching before I finally retire at 69.

    Can you do it? Yes, I think you can do it but you’ve got to be very determined, very focused, and hopefully, PD will not affect you cognitively. I’ve been blessed with full cognitive function throughout the last few years according to my neurologist I’m fine. I could go on and on and on about work in dealing with Parkinson’s, or you can check out my own personal blog https://journeywithparkinsons.com/ to give you insight into my life with Parkinson’s. You can also keep reading here. I will regularly be contributing to https://parkinsonsdisease.net/. I like the Health Union people; they are serving an excellent cause of helping and educating many people with Parkinson’s. I’ve only been with them for about a month.

    One final thing I can give you advice about goes like this. I spent the first year hiding behind my Parkinson’s and not admitting to anybody publicly except close friends, my lab, and my family. That was the biggest mistake I made not coming out and say I had Parkinson’s. Once I admitted it, once I started living through the disease, life became so much easier, work became so much more meaningful and made a big difference. I have engaged students in many different aspects of my life with Parkinson’s and that it has been a positive influence on many of the medical students and undergraduate students that I have taught over the last six years with Parkinson’s. Final point, stay in your career as long as you possibly can and be that role model for your undergraduate students and your grad students. Please contact me if you have any questions about any of this or any further comments inquiries about my dealing with Parkinson’s in an academic medical career.

    I look forward to more conversations with you, on behalf of the Parkinsonsdisease.net team, best wishes, Frank.

  • JeffD
    6 months ago

    Thanks so much, Frank. I will follow your advice. I am sorry it took me a month to respond but, like I said in my original post, I am a newbie to this forum and log in only sporadically. I hope to make a contribution to this site someday perhaps and make a positive impact like you have.

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