There is so much misinformation about so many things, but I hear lots of crazy things about people with Parkinson’s. Whilst looking up songs for my upcoming first radio show about (naturally) Parkinson’s Disease, (other disabilities and illnesses will be discussed) I found this little gem.
“On average, people with Parkinson’s die about 16 years after they’re diagnosed or begin to show symptoms. Those who are diagnosed at a very young age, such as around age 30, may live longer periods of up to 40 years with the disease.”*
Upon further reading I realised they’d began by talking about seniors, but realising I’m only allowed ‘up to’ 40 years post-diagnosis was a little sobering to read. Not only that, but of course it’s all untrue.
Yet this kind of misinformation is rife and I guess it’s one of the reasons why people with Parkinson’s often keep quiet about their ailment. I went to a gathering of neighbours this week, something pleasant and social to celebrate ‘Neighbours Day’, designed to create harmony and good things in our communities. I wore a pretty pink dress and baked cheese scones. Whilst I was sipping from my grandma’s fine china cups I began making small talk with a lady about this and that. We asked each other what we did for a living. She told me that she was a community worker who supports the disabled and those with chronic illnesses. I replied I thought it was wonderful because I was aware it was woefully underfunded. I asked if she knew someone that used to work for a Parkinson’s charity. She said she didn’t, and I went on to say how wonderful I though the person was and it was such a shame they were no longer around to help the people with Parkinson’s in the area. She agreed with me and then said “people like that, with Parkinson’s, they really can’t live alone, they need lots of support and incredibly dedicated carers.”
I hesitated. There was a third lady who’d been listening who was making all the expected “hmms” and “yes’s” nodding away.
My partner later told me he thought about saying “Well yes, I am very dedicated”, but thought he might get slapped.
“It’s interesting that you say that, because I have Parkinson’s.”
No, I just made it up. Of course really. FFS. “Yes, really. I have early-onset Parkinson’s.”
She looked almost relieved. “Oh, yes, were you diagnosed recently?”
“Eight years ago.”
We stumbled through more polite conversation around medication and the merits of exercise. I was told how I didn’t look ill. I assured them I was before making some lame excuse and escaping.
I felt weird and a bit strange. Some other women were sat in a circle and I overheard discussion of beauty products, that’s not my group then; I looked around and a couple nearby said “Hello”, so we began another polite round of introductions. We began the usual pleasentaries and then moved onto other things. I learned that one of them had suffered a medical incident and was now no longer working. I explained something similar had happened to my partner, Mr D. A little more discussion around this and that before someone told me it was good he had me around to keep an eye on him. I laughed cautiously. They then went on to tell me that “you never know what’s around the corner.”
I took a deep breath and replied, “yes, it’s funny you should say that because he suffered the cardiac arrest, which was awful, and I’ve got Parkinson’s! We have a joke that he’s just trying to outdo me!”
Awkward silence. Damn.
“Who told you that you had that?”
I looked them firmly in the eyes as I said clearly, “My neurologist. At the hospital. After months of tests.”
“Oh, right, well you would never know, you look perfectly normal. You don’t look at all like you have anything wrong with you.”
It’s weird. It’s moments like this when I want to scream at people. I want to cry. I want to look at them like they’re the strange ones and ask “Don’t you believe that I’m sick? What do you want from me? Why can’t you be happy that I look well?”
People that are very sick sometimes look perfectly ‘normal.’ What the heck is normal anyway? Why do I have to look a certain way to be accepted as ill or disabled?
I often feel that I’m on the fringe of two worlds; neither of which I completely understand. I sit and gaze wistfully at the able-bodied, who happily walk about without any worries, effortlessly lifting arms and legs as though they were nothing. I don’t fit in there any more. That world is sadly, very sadly, no longer mine. My medication works, but for shorter and shorter periods. It is, quite frankly, terrifying.
Then there are those like me. Afflicted with… something. Maybe it’s an unseen illness or disability, maybe it shows in another way. Why does disabled always mean we expect to see someone in a wheelchair? Naturally a wheelchair is a dead giveaway that a person will at least need some consideration around access and / or please no staircases, but for the rest of us, our needs remain a bit of a guessing game. Mr D, a strapping 6’5 male, looks perfectly healthy, but has a heart that is not working as well as we’d like. His electrics are, to be blunt, stuffed up quite a lot. He currently lives with the awful situation of Atrial Fibrillation, which basically means his heart beats at a very strange rythm. His heart rate can be anywhere between 30- bpm and 200 plus in the space of moments. It’s rather alarming to live with. As is the added annoyance of people constantly assuming he’s had a heart attack. Then again, the terrible knowledge and awful reality that cardiac arrest exists at all is, I think, often too much for the average person to think about.
Mr D looks pretty damn fine in my opinion. He seems to have no shortage of admirers when we’re out. Yet his capacity for – well – anything really – was destroyed by that cardiac arrest. Naturally we’re all delighted that he is here at all and not six feet under, only avoided by liberal application of immediate Cardio Pulmonary Resuscitation (CPR) and three defibrillators, yet he remains permanently, invisibly, disabled.
But has no wheelchair. He’s clearly just faking.
I don’t look like I have Parkinson’s. To those that see me once my meds are working and I’ve endured more exercise and physio. Don’t worry, I remark, I will one day. I hope it’s a very long way away. I hope it never comes at all. Yet I fear very much that it will.
Meanwhile I’ll keep taking the tablets and repeating the exercises whilst trying my best to ignore the white noise of crazy remarks.
Until next time.
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* (source – https://www.homecareassistanceanchorage.com/parkinsons-and-longevity/)
2 thoughts on “Looking Good?”
On “Looking Good?”
Interesting and challenging in its way! I have experienced a similar sort of questioning of my own Parkinson’s credentials recently. I don’t generally attend Parkinson’s groups but have been setting up a new activity so have got to know a wider circle of PWP a bit better. Two of them quite independantly felt the need to check out whether I have Parkinson’s. The response from one was “But you don’t look like a woman with Parkinson’s” the other said “So you must be newly diagnosed” and I say “Nearly 9 years now”. I guess like many others it is only my partner who really sees the impact on me, but then I would argue that he interprets my condition as worse than it is. Ah well. If I created my identity was formed by other people and believed their images of me, given it took 6 years from early signs to diagnosis – I’ve only got to put up with it for another year or so????
The best advice I was given was “everyone else is more worried about it than you are”. Sometimes true, sometimes… I just want to scream!