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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.

Another Road

Terri Reinhart

I have found health insurance.  Yesterday, I filled out the online form to have my Medicare managed by Kaiser Permanente.  This wasn’t really in my plans.  I have been very happy with my doctors at the University clinics; however, the Kaiser insurance is affordable and will help me to bridge the “donut hole” prescription drug gap by covering my generic prescriptions.  I was also pleased to learn that there are neurologists at Kaiser who trained under my doctors at University.  Still, it is a difficult to think about having to get to know yet another set of docs. 

Before I make this change, I would like to take a moment to acknowledge these doctors from the University of Colorado Health Sciences Center who have guided me thus far in my Parkinson’s journey.   In a system that doesn’t lend itself well to creating close doctor/patient relationships, the neurologists and others involved in my care never made me feel as though I was just one of the hundreds of patients that come through their clinic.  So, it is with a little sadness and a whole lot of gratitude, I will be saying goodbye to some amazing people.

Dr. Olga Klepitskaya

Dr. Klepitskaya was the first doctor I saw in the Movement Disorder Clinic.  I had my first thorough neurological evaluation with her.  She found me and my symptoms to be “interesting” and she occasionally called out to a student to bring the video camera to film me as I walked down the hallway.  She has been the one to help get me stabilized on medications so that my Parkinson’s symptoms are minimized as much as possible.  She took the time to read some of my Parkinson’s journal articles and saw me as a person instead of just a patient.  She also put up with me when I got teary for one reason or another, or for no reason at all, and she expressed her concern about whether I might be experiencing depression.  My response, I remember clearly, was to tell her, in the midst of my tears, that I had never felt less depressed in my life.  I’m not sure if she bought it, though I meant what I said!  Dr. Olga has been my consistent neurologist since my diagnosis and I feel very fortunate to have benefited from her expertise.

Dr. Deborah Hall

Dr. Olga referred me to one of Dr. Hall’s studies so that I could get a free second opinion and confirmation of my diagnosis of Parkinson’s disease.  I received a very thorough neurological exam and donated some blood for the study.   Dr. Hall then told me, with a huge smile on her face, “I’m 95% sure you have idiopathic Parkinson’s disease.  Let’s hope it’s that!”  Her attitude that “if you’re going to have a neuromuscular disease, Parkinson’s is the one to have”, has stuck with me through the years.  PD is very treatable.  You don’t die from Parkinson’s, you die with it.  From this beginning, Dr. Hall set the tone for my journey.  I am so grateful to her for this.  Dr. Hall actually left the CU Health Sciences Center before I did.  She is now an Assistant Professor of Neurological Sciences at Rush University Medical Center in Chicago, IL.  

Dr. Maureen Leehey

Each of my doctors has had their unique role in helping me to learn how to live with my diagnosis.  When Dr. Leehey would come into the exam room, I would inevitably breathe out and relax.  Just by her presence, she kept me calm and helped me to have confidence in my own ability to understand and manage my health.  When I struggled with the idea of applying for disability, Dr. Leehey was reassuring, “When you have Parkinson’s, you can remain active but there will come a time when you cannot be gainfully employed.”  This was such a different message than I had gotten from anyone else.  With Dr. Leehey, I have felt included in the process of determining what my needs were and how to meet those needs.  I have been a partner, not just a patient.  Fortunately, I am currently enrolled in a study with Dr. Leehey and will be for two more years.  I will still have a couple more visits with her.   

Dr. Jacci Bainbridge

Dr. Bainbridge is working with Dr. Leehey in the study mentioned above, and it was she who first contacted me about participating in this study.  She introduced herself as Jacci and it was months before I learned that she has her Doctor of Pharmacy and is a professor at the University Of Colorado College Of Pharmacy.  I have since learned that she has twice been awarded the honor of “Professor of the Year” at the University of Colorado.  She is one busy lady but when I come in for my study visit, I have always felt as though she had all the time in the world for me.  When I started to forget to take the study medication and thought I should leave the study, Jacci talked me into staying with it.  I am very grateful for that!  Thankfully, the study is not over yet.

One more person deserves special mention, even though she is not a doctor:


Rachel is a registered nurse who works with the Complex Care Program through Anthem Insurance Company as a nurse advocate for patients who have multiple health issues.  For the last 9 months or so, Rachel has called regularly to check up on me and see how I’m doing, how I’m managing with my Parkinson’s, and whether I have any questions.  I wish everyone had the opportunity to have a nurse advocate.  I knew that I could call Rachel at any time and if I had concerns, she would do her best to find answers or more resources for me so that I could find answers myself.  Not only did CU Anthem drop me from their insurance but CU dropped the Complex Care Program as part of their health coverage.  From a purely monetary aspect, I would consider this to be a huge mistake.  Often my questions to Rachel had to do with something new that would come up with my health issues and I would wonder which doctor or specialist would be the right one to handle that particular new challenge.  Her guidance saved me from going from doctor to doctor as I tried to puzzle my way through once again.

Onward!  As hard as it is to leave these doctors, I know that I will get to know my new doctors at Kaiser, too, and will find that they will each have their unique gifts to share with me.   I’m also hoping that maybe Kaiser will have a nurse advocate program. 

For now, I will end with a huge THANK YOU to Dr. Olga, Dr. Hall, Dr. Leehey, Jacci, and Rachel!  I can’t thank you enough for all that you’ve done for me!

Terri Reinhart