kitty with arms behind her head laughing in a pink dress.

Just Me, No Apologies – The Living With Parkinson’s Blog

I am Who I am

I wrote a piece this week about how I felt about exercise. In it I wrote a list of things I feel when people talk to me about Parkinson’s. Two points were “I know I look fine, but I’m not” and “Stop trying to make me feel bad because I’m not lying on the floor twitching.” That’s what this post is all about.

People mean well. That’s great. They say nice things like “Oh but you’d never tell” and “You look fine.” I’m quite pleased people can’t always tell. But the ‘you look fine’ actually always rankles a bit. What do you mean? What am I ‘supposed’ to look like? Am I supposed to be moving uncontrollably? Drooling from the corner of my mouth? Perhaps you expect me to be twitching in my chair? Believe me, these things may yet come to pass. Of course I desperately hope that they don’t, but even if they do, does that no longer make me ‘fine?’

kitty with arms behind her head laughing in a pink dress.
Kitty Fitton. Plenty of life left in this one.

There’s a huge underlying truth here, in that we as society still view people that are different as different. Ever since I realised that my diagnosis might eventually lead me to some kind of physical disability  I’m achingly aware of this. I’ve witnessed this, it was quite distressing. 

I was out with Emma, the awesome Ninja who helps me with this very blog. Just in case you’ve missed something, she also has Parkinson’s. If you know anything about this disease you’ll understand when I say she and I have quite different symptoms, but share the same crappy disease. We had lunch together, the food she’d eaten and her tablets kind of … well they clearly didn’t like each other. The protein in the food meant they didn’t work as they should and she kind of …. Began to shake quite a lot. She assured me and the friend we were with that she felt perfectly fine, but yes, it was very annoying.

However, those around her panicked. They rushed to help her. Did she need anything? What was wrong? Pity abounded, and it was clear that they saw her as someone in need. She’d changed in moments from capable, strong, intelligent to ‘that poor woman with Parkinson’s.’ Yet she was the same person she was ten minutes ago.

woman in black clothes sitting on a deck in a garden.
She's fun and friendly, she's really good at lots of stuff. She's Ninja Emma!

Our medication masks our symptoms. Thank goodness they do it so well. I don’t (as yet) have anything like dyskinesia or dystonia. They’re actually brought on by the medication we take, yet I’m reliably informed that it’s better to suffer with either than have the effect of the Parkinson’s disease. Which brings me neatly to my next point.

Stop trying to make me feel bad because I’m not lying on the floor twitching.

 

Not the snappiest of titles I’ll admit, but still the truth. People keep telling me I’m fine, I don’t look sick, and some (thought thankfully not many) people with Parkinson’s have even accused me of not being sick, or not having the authority to speak about this awful thing, because I’m not even affected.

How do you know I’m not affected?

I can feel it in my body. Well, I feel stiff. The best way I can describe it is when you’ve been for a long walk and then you rest. Your body sometimes stiffens up, and it’s a bit like that. It’s hard to move. I do find it hard to move. I love it when my meds kick in because then I feel great. I’ve read lots about ‘the first five or so years’ where you’re ‘still really good’. It’s all supposed to be downhill from thereon. I’m determined to fight it every step of the way. Not everyone gets that bad. I sure hope I’m one of the lucky ones.

Does that mean I have no voice? Does this mean I’m not allowed to talk about something that affects me greatly, every single day? If I don’t take my fifteen tablets a day I’m in big trouble. When things start to wear off, I struggle with walking. I’ve watched videos of myself and saw that one side of my face was indeed not the same as it was.

 

kitty with glasses and a black t shirt pointing at her face and grinning.
Just me. No apologies offered.

 

 

I realised that I don’t have to be ashamed that I’m fine. Because I know I’m not. I also know that I work really, really hard to stay this way. Furthermore, without a cure, I’m going to have this a very, very long time. So give me the time I have. Be happy for me, that I can walk, speak well and undertake physical activity.

Getting Parkinson’s made me see the world differently, people differently. I hope I’m not as judgmental as I once was.  I listen to the elderly with more patience, understanding and respect. I see people with disabilities in a whole new light. Before I was diagnosed I thought I was respectful and kind, yet it’s more than that, it’s treating everyone with equal value. Because all of us have value.

I know people don’t mean to be unkind. I understand that I myself have probably said some of those things to people, inadvertently caused sadness or upset to people in the past, said something crass when I meant well. In short, we’re people,  just like you. You may one day find yourself in a similar situation as us. I hope that you don’t, because it’s not much fun. However life is for living and I’ll continue to push it to the limits as long as I can.

Kitty.

kitty laughing into camera
Kiity Fitton - usually up to mischief.

Kitty Fitton is a motivational speaker, MC and comedian. She is also a full-time blogger and writer. She is mother to four small people and was very cross to discover she had Parkinson’s Disease.

Find out more at her personal site below. 

emma_k
Emma Kyriacou. Quite good at hitting things.

Emma Kyriacou is a real-life ninja. Taking up Karate to help fight her Parkinson’s Disease, she’s co-founder of Good Moves and is passionate about promoting exercise to improve mobility and neuroplasticity. (Is that a word? It should be.)

Find out more at her personal site below. 

3 thoughts on “Just Me, No Apologies – The Living With Parkinson’s Blog”

  1. I find Aquafit exercises very helpful. When exercising in the water I have no fear of falling, the water provides support. Biggest fear is falling between the pool and changing room……..

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