Although I have retired as of 9/5/2024, I still feel that my Parkinson’s at this stage is not obvious to many around me. I’m not sure sometimes whether that is a good thing or a bad thing. It’s a good thing I think in many ways, because I don’t want the world at large to know that I have Parkinson’s. To perhaps pity me, which I would find hard to take. I know I recoil a little when I tell someone who is not aware that I have Parkinson’s and they get that look on their faces, that pitying look. I know that I hurriedly say, ‘Oh, it’s early days yet!’ or something akin to that, so they don’t go on looking at me in that ‘poor you’ kind of way.
At the moment, with my back issues I have significant pain in my legs, which apparently stems from my back. The pain is unrelentless, but I try not to show it too much lest the pitying glance emerges again and I try to defend myself. I know it may sound strange to some that I talk about ‘defending myself’ but I don’t want people to treat me differently because they know of my diagnosis. I want them to know that I am still capable of a lot of things and I am not ready to be written off yet. I am hanging on to the hope that my back operation will be soon. I am also hanging onto the hope that it will fix my back issues which present in the pain in my legs.
When I worked as a Social Worker for people who had had a stroke they would often struggle with people’s reactions to them. If a mild stroke especially, they may present on a day-to-day basis as still being quite capable. They may present – for some – as though the stroke has not left any lasting damage. They are what a member of my team used to call ‘the walking coggies’ or those that may be safe to walk on one hand and not able to be safe unsupervised because they may not remember where they are going, or remember how to get home, or how to catch a bus and a whole bunch of cognitive (that’s the coggies bit) effects that are easily missed if you were not aware of them.
For me and I’m sure for others, there are often hidden symptoms that we like to keep hidden. Well, at least I do! Who amongst us Parkies people has not sat on a quivering hand to hide it from those around us. Or a juddering leg that we try to hold down and keep still. Who amongst us has blamed tiredness for forgetting a piece of information that we know we should know?
I know that I am not ready to be judged for my Parkinson’s!
Then again – and this is where it gets difficult to explain – I want people to cut me some slack because I have Parkinson’s and am not operating on the same level as they may be.
So, on one level I want people to treat me like anyone else despite the diagnosis and on the other level I want people to cut me some slack because I have Parkinson’s.
Writing this, I feel sorry for anyone interacting with me, because if I don’t know how I want to be treated, how can they possibly know?
At the moment with my back issues, I have mobility problems and need a walker. I get very tired because of the morphine I take for the pain. I have speech problems because of the morphine. I often stop in the middle of a sentence, realising I am in the middle of spouting something that is not going to make sense.
When people see me with the walker, I want to shout at them ‘It’s not Parkinson’s!’ across the room when I see that old pitying look on their faces. Then again, like the recent trip to a department store, I want to hide behind the racks of dresses to avoid the situation altogether.
It’s a constant struggle to figure out what is Parkinson’s, what is morphine induced, what is high levels of fatigue caused by the morphine that sees me napping for up to three hours a day! I am limited in what I can do, because of the pain, the mobility issues and the not small inconvenience for my poor husband that he has to take me everywhere I need to go.
Parkinson’s is not a walk in the park. For even a walk in the park requires of us many things that may not be obvious. Perhaps we need to self-assess and share that information. This is important so people do know that perhaps we need someone to walk beside us because uneven ground might cause us to feel a bit unsafe if left to our own devices. That little lip when getting into a shop or other building can be enough to trip a person with Parkinson’s up if not having someone with us to check in that we can safely navigate.
So, to all you Parkies out there and to all the poor souls who help us, I would like to acknowledge you. Just as people around us do not always realise the challenges we face, they also do not realise the huge responsibility that those who care for us are taking on.
For my poor husband – who is always loathe to ask for help anyway – he has to do all the cooking, cleaning, laundry, vacuuming, lawn mowing, gardening, driving me to appointments, supervising my meds to make sure a tired me doesn’t mix them up. That’s just a short list of the huge amount my husband does due to my current infirmities. We are both hoping that my abilities to help with the daily tasks of living will return once I have my operation.
Fingers and toes and everything I can cross, crossed that I get my operation soon and then can have years of working with my husband and enjoying each other’s company and be back to being a partnership soon!
My journey with Parkinsons 