I met with my friend Ben, a fellow cycling Parky, last week. He lives in Reading while I live in Oxford, so we tend to cycle to a destination halfway between us for a coffee (and a cake of course) and chat.
One thing I have discovered about the Parkinson’s community is that they’re a friendly bunch. After my diagnosis I actively avoided meeting other people with the condition. From what others have said this is a common behaviour for those newly diagnosed. For me, only just in my fifties, with a young family, and still working, I felt like burying my head in the sand for fear of a glimpse of what the future had in store for me. The stereotypical image I had of what a person with Parkinson’s looked like didn’t help.
Three years on, unsurprisingly I was feeling alone in my journey. While I have the love and support of my family, it’s difficult for them to relate and difficult for me to articulate what it feels like to have the condition. Finally putting my fear aside, I decided to seek out and connect with other people in the same position as me.
That’s how I met Ben, ‘swiping right on an online ‘dating app’ run by the Michael J Fox Foundation for people with Parkinson’s and their carers. The first time we met was the first time I had met a fellow person with Parkinson’s. Ben is a similar age, still very fit and active and working as hard as he can to maintain this for as long as he can. It was great being able to vent with another person sharing the same frustrations and challenges as I do on a daily basis. A similar gallows sense of humour was also appreciated.
Meeting Ben, gave me the courage to join a local fitness class for people with Parkinson’s. This is one of the best things I’ve done since my diagnosis. I am one of the youngest of the group, several are retired and are perhaps currently enjoying their grandchildren rather than their children. Even though my classmates may be at a slightly different time of their life, may have received their diagnosis sometime before me and may have different symptoms, they’re not defined by their condition. They have all lived fulfilling lives, and continue to do so.
The camaraderie I have found in the group has been a very positive experience. Over a post class coffee I find myself sharing almost too much sometimes, but they are always happy to listen and give me the benefit of their experience.
At the end of my last meeting with Ben, we signed off by noting that while Parkinson’s isn’t a welcome friend, our lives have been enriched by the community. Having Parkinson’s has changed our outlook on life for the better, focusing on living and not letting it pass us by.
So this World Parkinson’s day remember that every person with Parkinson’s is different, from 40 to 80, working or retired, parent or grandparent, we are all members of the same club, even if we hadn’t wanted to join it.
Balls to Parkinson’s 