I have always been someone who has been open and honest about things that are happening in my life. I could probably be accused of being an oversharer and that would be a reasonable thing to say. I would much rather lay all my cards on the table than have anyone misread what was going on for me.
I would say that I am neither an extrovert nor an introvert, but a combination of the two. There are some situations where I can be quite shy, but other times I don’t mind getting attention. The mere fact that I write this blog and do my podcasts is a good illustration of one of the ways I am OK with being the centre of attention.
I feel most comfortable letting people that I meet know that I have Parkinson’s. I prefer that to perhaps running the risk of people misinterpreting when I can’t find my words or my memory lets me down. When I tell people I usually just say that I am in the early stages of Parkinson’s. Then I might share that it takes longer for me to process information and that my memory is not that great. In situations like my recent experience of learning a new card game, it was helpful to let people know that it might take a while for me to remember how to play or that I might take longer than some to decide on a move.
The thing that I notice the most when I tell people, is that the most common response is, “I’m so sorry!” and then perhaps give me a pitying look. I get that people are empathizing with me, but the last thing I want or need is anyone’s pity. For the most part, I have a good life. I have a husband who loves and supports me. I have children and grandchildren who love me. I have enough friends to keep me social and I have enough social connections to keep me from isolation. I live with my husband in a home we both love.
Sure, I have more than my fair share of health issues which are a pain, but, they so far don’t stop me from doing much at all. I continue to play bowls, go for morning swims at the local pool three times a week. I can drive, I can visit my children and grandchildren and enjoy their company.
When I look at my life, I am actually quite blessed. Blessed because there is still so much that I can do and that I can enjoy. Having the diagnosis has made me want to make the most of my life and not put things off. I am also fortunate in the fact that Parkies has actually enhanced my ability to write poetry. For some reason – I read somewhere – if you are at all artistic, whether it be painting or use of words in the form of poems you can actually do better than prior to having Parkinson’s. Whether it is the medication or something else, I don’t know. But my poetry is more prolific than ever and I also write better poetry. So, at least that is something to celebrate.
If I just focus on the here and now and enjoy what I can do, then I am not to be pitied and I hope that I never will be.
Who knows what tomorrow will bring.
It might bring a cure, if not for us, for those that follow.
My journey with Parkinsons 