A colleague and I were visiting a few days ago about Parkinson’s Disease. She shared with me that her aunt had PD and what the family went through when it came to timing of her medications, physician’s visits, and caring for her throughout the disease progression. We talked about the advances in research and how I was involved as an advocate for education, awareness, increased clinical trial participation, and seeking the best quality of care possible for those living with Parkinsons.

She then asked me a question that I don’t remember having been asked before that day. “At which point did you go from being a patient to being a patient-advocate?” The question took me back to a Sunday morning about four and a half years ago when I realized that this disease that had moved in uninvited and unannounced was not going to be a focal point in my life as I knew it up to then. The focus needed to shift to others that were dealing with much greater issues related to this disease than I was.  This, of course, was after having gone through several months of a deep depression, trying to figure out what the future held for my family and me.

I would say that after the most trying times of my life, I found it easy to transition from a patient to a patient-advocate because of what I feel that we are all called to do, and that is to be of service to others. I had a purpose in life that included the biggest fight yet and I promised to do what I could, while I still could, to make a difference in the lives of others whom couldn’t speak for themselves.


4 thoughts on “From Patient to Patient-Advocate

  1. What an interesting post. As I read it, I realized that I haven’t embraced the idea of me as “patient” yet, nor my husband as “caregiver”. This is at 3 years post-diagnosis. But I love the idea of using this crazy “gift” of PD to reach out and help. Thanks for inspiring me.


    • Thanks for the kind words. I’m sure you’ll agree that we don’t wish this disease on anyone. The one thing I would wish for everyone is to experience the support, compassion, and hope that we receive when focused on helping others along the way.


  2. @ 42 – three years post diagnosis I still do not view myself as a patient thanks in part to a relatively slow rate of progression. I find myself in a unique position though of being both a parkie and the daughter of a parkie – my 72 year old mother is 15 years into her diagnosis – although living 700 miles away I am not her primary caregiver – she and my father are still able to live on their own – still having a mother who is a parkie leaves me with few illusions – pd will progress – true more slowly in my case as I am younger – but seeing the changes in my mom leaves me no room for denying that pd means major life changes eventually – so I thank you for all you do in supporting research and patient advocacy –


    • You’re welcome Karen! Thanks for sharing. It is good to hear that your mom is doing well, and that she and your father continue to live in their own home. The hardest thing I ever had to do was to let my dad know about my diagnosis. His response, based on his age, was that he was the one that was supposed to have PD, and not his youngest son.
      And I also want to thank you for your willingness to help out on the advocacy front.


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