I’ve put off writing about this for some time. It’s tricky. I have wanted to work it through in my head but I don’t want to upset anyone with what I say. I’m going to write about my recent decision to do something many people have thought is ridiculous, rash, stupid and completely crazy. You see, to the world I was happily married. We were the perfect couple. A bit mismatched in areas, but they say that makes things interesting. My husband was supportive and kind. I had no reason to actually find paid employment and enjoyed looking after my children at home. Yet I was unhappy. My husband was – is – a good man. He’s a great father and is a very kind person. Yet we were moving in opposite directions. For a long time, but especially since I was diagnosed with Parkinson’s I felt as though I wanted to grab life by the horns and run with it as fast as I could. Experience everything. Feel the wind in my hair. Watch the sunset on the beach. Swim in the sea, ride my bike as fast as I could along long sweeping pathways. Climb mountains (well I […]
I’m a Professional Public Speaker. I want to write about being a professional public speaker. I’d like to avoid discussing living with young-onset Parkinson’s. This was never supposed to be a blog about Parkinson’s Disease. It was supposed to be about my comedy, my MC (Mistress of Ceremonies) skills and of course, my ability to hold an audience in the palm of my hand whilst I encourage, motivate and inspire people. However. Here it is again. The things people say to you when they discover you have this. What will it take for people to realise we’re not written off and ready for the scrap heap? Once again this week I had a conversation with someone about life in general. It came up of course. It always does. You might have noticed that I’m not shy about it. Anyhow. There it was. “Oh yes, you have Parkinson’s, don’t you?” someone commented. “Yes I do” I replied. They proceeded to tell me about their friend whose husband has Parkinson’s. How you couldn’t tell at all whilst he was in his forties, yet gosh, it really took hold in his fifties you know. He’s had to go into a home now. But […]
Remember I’d said that I’d written a piece about the way people with Parkinson’s (pwp) were depicted? I was worried about possible implications if I posted it, yet once again I found myself cut adrift, alone, and wondering what more could possibly come along to cause me strife. (Actually, there’s always more, you have to keep smiling!) It made me realise that there really is only you. You depend on you. Because when it gets right down to it, nobody will ever have your back quite like yourself. Cynical? Sure. But after the last few weeks I’ve had, it’s the position I find most realistic. To hell with repercussions, I’m angry. I’m really angry. I won’t be told to pipe down and keep quiet, and here is the piece I wrote. I’ve been thinking a lot recently about the way people with Parkinson’s (pwp) are often portrayed in the media. It’s a subject clearly close to my heart. When I first heard that I myself had Parkinson’s Disease the very first words out of my mouth were “isn’t that like, really bad?” I thought I was going to die. Well. We’re all going to die, but I certainly imagined my […]
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I was to write you a nice post about something other than Parkinson’s today. However, those lovely people at Parkinson’s Life sent me this lovely article. It’s especially nice as I’m in it, and my lovely friend Emma from The Parky Ninja. Enjoy. You can find the article HERE. Also on Parkinson’s Life is this awesome video from Christine Jeyachandran It might also feature a certain recognisable Yorkshirewoman. Yes. My quest for World Domination is well underway.
And so. I have become another victim of the Covid-19 economic downturn. I received a phone call about the job I had been told I was successful for. The one that they needed filling immediately. The one that was still needed, but slightly delayed due to level 4. Perhaps Mid May. Yes. All being well around there. But no. Ah. The dangers of working (potentially) for a charity or non-profit. Lack of resources. Full restructure. Employment freeze. And I get it. Of course I do. But I wanted that role so badly. For so many reasons, both selfish (I need a job – I need the money badly) and also altruistically. (It was a position where I could have helped others very much.) But it is not to be. Possibly. In a few months. After the restructure. They may call. They may not. I have to rethink. There has been much to rethink recently. And so. Back to the drawing board and trawling employment sites and looking for suitable roles. The issue here is of course gaining attention. I’m told I’m over qualified for some, but under qualified for others. Usually this is recruiter-speak for ‘not currently employed’ or […]
Right now I’m finding it hard to type. My left hand is annoyingly unresponsive without a little extra oomph from me. It’ll come good in a bit, I recently took my tablets. I’m still bad at taking them on time. It’s not that I don’t know I have to, it’s more like a silent rebellion. “I don’t need you! I can do this, look I’m actually doing really well.” Then it’s like hitting a wall. Erk. Rats. If I hadn’t waited I wouldn’t have crashed and now wouldn’t be waiting for the most unattractive / desirable coming ‘up’ there is. Though of course for those of us with Parkinson’s, ‘coming up’ is exactly what we want. We need those little suckers to do the trick and help make our bodies move again. But I talked of this a couple of weeks ago, you don’t need to hear that again, do you? Last week saw the end of Parkinson’s Awareness Month. Irritatingly overshadowed by this thing called Covid-19. Not to let a little thing like a global pandemic get in our way, we’ve still tried to do bits here and there. I was stoked to be asked to join in […]
At times like this I detest Parkinson’s. I’ve been remiss. I forgot to take my tablets. I’m lucky, my tablets work well, but I took the last lot at 11.30am as scheduled and I forgot until now, 07.00pm to take the next lot. I was distracted, I was eating dinner with my family. It’s Easter, we made chocolate cupcakes with buttercream and tiny chocolate eggs for dessert. God knows how difficult it’s been to find Easter Eggs this year. And I just forgot. Bitter Little Pill And now my arm is heavy, as is my neck and head. I hate that. I mean, movement is coming back to me, even as I type this I’m feeling better. However, it’s that awful realisation that despite all the smiling, all the laughter, all the “hey, let’s be positive!” I can’t actually cope without taking my pills. Without my medication, my limbs feel strange, like I’m excessively tired. I feel that my body is failing. I’m working out every day. I’ve recently got into yoga, and it’s helping, I can feel it. Despite this, None of it means anything without my pills. I’m a woman of science. I believe in medication. I know […]
Just what is a motivational speaker? It’s a word that’s used so much, I hear it often, yet what is expected of the person that claims to motivate and inspire? For me, it’s connecting to my audience. It doesn’t matter if it’s a room of retirees or a room of corporates and politicians, understanding who you are talking to is vitally important. It’s key to the atmosphere you want to create. Connecting on a personal level is vital. How can you help someone if you just tell them a boring lump of facts about yourself? A good speaker can touch every person in a room and encourage them to realise that they themselves have the power within them to succeed in their chosen path. This connection is what’s so important. Nobody really cares about your story at first. The times I’ve heard “Oh, it’s a talk about Parkinson’s.” and I think “I really must re-word this talk!” I am so much more than an irritating incurable disease. Another overused yet apt word is of course, storytelling. What I do is weave an intriguing tale. You’re pulled in and travel along with me. Sharing the lows and the highs right there […]
This week I completed a set of questions for Parkinson’s Life magazine. It got me thinking about how people perceive those with Parkinson’s Disease. My talks cover that off too of course, and it’s something I’ve pondered myself. I sometimes wonder what my friends truly think of this, and my efforts to continue life as normally as possible. I know some of them think I’m crazy. Some of them think I’m deluded and I’ll drop dead early, and some of them think it’s great and I’m going to be just fine regardless of my affliction. In the end it doesn’t really matter what any of them think. This is ultimately my fight, my battle. Not only physically, but mentally. It would be oh so easy to simply give in. Instead I’m at the gym most days, and despite my fear of falling over my own feet, today I have vowed to get out and go running again. Stealth Fighter I hate running. But I hate Parkinson’s more. I despise this thing that’s taken me by surprise. Stealthily trying to hold me back, contain my body and with it, my spirit and drive to succeed. I hate going to the gym, […]