I received a phone call last week from a fellow Parkinson’s Disease advocate that made my day and also got me to thinking that the written word is mighty powerful. She introduced herself and told me that she had been reading my blog posts. This fellow person living with PD is someone whose work has reached far and wide and whom I’ve admired from afar because of her reputation as a well-respected advocate. You see, in the advocacy community there are all types and personalities whom work tirelessly in their area of interest and have a passion to create change for the better and end this disease once and for all. This fellow advocate has been leading by example for several years now, being involved with several organizations, being asked to advise on issues related to the patient community in others and has garnered my respect because the PD community is at the heart of all she says and does.
What she said during our conversation made me realize the mighty power of the written word. “When I read your posts, it’s as if I’m reading what I’ve been thinking of saying for a while now“. My thought was that the countless nights of dealing with insomnia and from where I’ve said that my ideas for sharing about issues, disparities, and any other concerns come from, have not been wasted. “Keep doing what you’re doing because you’re being heard and you’re making a difference” was the comment that stuck with me for the rest of our conversation and beyond. “I have copied your posts to share with the organizations that I’m involved with…” when we talked about moving to the next level of advocate/patient involvement and being listened to in the research process.
I then asked if she had any suggestions on posts to write about that would help further the cause. Her response was that I should continue writing “from the heart”. I think I’ll keep doing that… and hope that people feel that what I post is worth reading and sharing.
For now, my fellow PD advocate will remain nameless but I’ll be sharing what we have agreed to work on together, and involving many others along the way, that will change the way things have been done, accepted, and have had very little benefit to the Parkinson’s Disease community.
Before we said our goodbyes I shared with her one of the driving forces behind my passion for speaking for those whom can’t speak for themselves. In the musical “Wicked”, the song “Defying Gravity” has the following lyrics that I have taken to heart: “I’m through accepting limits ’cause someone says they’re so… some things I cannot change but ’til I try I’ll never know”. She and I will keep fighting for change that benefits our family in all parts of the world that live with Parkinson’s Disease.
Sometimes the worst limitations in life are the ones we place on ourselves. That sounds like a good topic for a future post…