Is it just me or are the years passing quicker? Living with Parkinson’s disease and the significance of time become more and more entwined as the months and years move on. The concept of time for anyone living with the impact of a degenerative disease is monumental. I heard once and I cannot remember where that this is the best version of me and my condition, now, this very moment. Well, I was told this some years ago so you can imagine the impatience and urgency to cram life experiences in, today as it was back then.
Time! For me, speaking only for myself, is primarily a gift. I feel guilty when my anxiety flares, reducing my enjoyment of each precious moment. I take my meds to mitigate the worst of my Parkinson’s related anxiety but it doesn’t completely eradicate it so I’m left with this gnawing worry which really annoys me because every hour is an hour I won’t get back and over-thinking is a waste but there we are, it is what it is. Time is also a harsh reminder of the parts of myself that are inevitably fading, and that is harsh. Harsh to acknowledge, shocking at times to discover and always, always difficult to put into words. All I know is that more and more household and personal aids are creeping in which is a blessing, allowing me my independence, but also saddening because they remind me of the me last year. What do I do? I buy a lovely throw and drape it artistically over the the chair with the obvious hand control at the side that shouts, ‘She needs help getting out of her chair!!!’ I don’t all the time I want to shout back, just when I’m tired or my meds aren’t at their best! I have no words at this time for my newly installed stairlift… still processing that one but it’s only needed when my hip is bothersome or my balance is wobbly. My motto is if I can I will. I don’t want to rely too heavily on these adaptations…. not yet! It’s my way of keeping a sense of control, a sense of self. Deep Brain Stimulation surgery has afforded me the ultimate gift of keeping my Parkinson’s within the realms of manageable for now.
Looking forward is healthy and 2024 is a big year for me. It is with mixed feelings that I will mark my ten year diagnosis, although in reality it will be fifteen, as my Parkinson’s was undiagnosed for a good few years before. It’s been a journey and a half to get here and when I look back over those years, I’m happy to say I’m doing ok even though the disease is becoming more disabling. Importantly for me even though I do struggle with anxiety and low mood my creativity has blossomed and I take pleasure in making my surroundings as joyful and vibrant as I can. I read books with a deeper understanding of life. I respect that life is not a fairytale with a beautiful ending but I am trying to lean into the experiences of life consciously and glean any opportunities and moments of joy along the way. I am also fulfilling a long-held dream next year with the completion of my Master’s in English Literature. When I’m studying it’s not about my Parkinson’s it’s about me, about the schoolgirl who loved to read and write stories. So lots of hard work still ahead of me in the coming months, combined with the self care required to stay healthy and steer clear of the pervasive fatigue that I navigate daily.
So, a really meaningful gift this Christmas is the gift of time. Time to slow down just for a little while and indulge with real pleasure in the food, the films I have seen countless times (Sleepless in Seattle), fresh air in nature, laughter, catching up and ultimately celebrating this gift of Christmas once more with Parkinson’s by my side making sure I’m sensible at all times…. Parkinson’s, always the party pooper! Wishing you a Merry Christmas and thanks for reading.
Parkinson's: Always Moving Forward 