Laugh in the Face of Adversity

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It is currently World Parkinson’s Awareness Week. Or month, depending on how you look at it. It was World Parkinson’s Day on 11th April, James Parkinson’s birthday. But enough about him. Some of us sadly have to be only too aware of flaming Parkinson’s every single day. It’s a bit of a drag. (No pun intended.) I was delighted to be asked to take part in a fundraiser to raise awareness about Parkinson’s, a comedy night held in Wellington, New Zealand. It was a great night, and I was lucky enough to meet some fabulous people from our community. Kitty has a microphone and is not afraid to use it! It got me thinking about comedy regarding disabilities. When I first began doing stand-up everyone thought I would be doing the same, stale old stuff about ‘shaken not stirred’, wank-jokes and falling over. I was warned that making fun of people and Parkinson’s was a sure-fire way to disaster. However, that’s not my style. Laughing at someone with an uncontrollable tremor isn’t something I personally find that amusing. There’s so much more rope in pointing the finger at the unafflicted, the able-bodied, the smug healthy people. My act is all […]

Jump!

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Learning to jump – both literally launching oneself into the air, and figuratively jumping right into the deep end, or doing something you’re afraid of – normally are equally impossible for me. More like learning to fly (“I’m learning to fly/ but I ain’t got wings/ Coming down/ Is the hardest thing”). Unlike Tom Petty though, I’ve got the coming down part sorted. Jumping is a thing with me partly due to a kata I’m learning called ‘Enpi’, which roughly translates from Japanese as ‘flying swallow’. It is one of four Sentei kata that karateka at brown belt level need to know. They are all much longer, more difficult kata than I’ve learnt for previously. Enpi, although apparently the shortest Sentei kata by numbers of moves, is famous for this spinning jump you have to do at the end. I don’t actually need wings to do this jump. Stronger leg muscles on the other hand would be handy. I do work on building leg strength fairly consistently, but at the same time I am one those dopamine-deficient people who struggle to maintain body mass. Exercise, particularly strength building exercise, is the proverbial plug in the dam at this point. Is […]

Live, Laugh, Love

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I was going to write about how great it is to be five years on and still appearing to the outside world as though I’m fine. Parkinson’s is a strange thing. Every day you think “this is the healthiest my brain will ever be” as you know that tomorrow and the next and the next there is something inside you working to bring you down. The days turn into months, then years. We don’t know where we’re going, what our future is like, or how many more days we have left to run, jump and think fast. Then I was asked to contact someone who had been newly diagnosed and had reached out for help. They were younger than me, with a family and were clearly distressed and worried about the diagnosis. It got me thinking about those first few days of knowledge, and the fear – no – the genuine terror of the unknown. So perhaps my original idea isn’t actually that bad. Because here I am, five years on, and I am doing well. Paradoxically, I’m fitter and healthier because I have Parkinson’s. I sometimes catch myself. I feel stiff and unwieldy on a morning. But is that […]

If It’s Not Fun, What’s The Point? – Emma

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My good friend Kitty asked us in her latest blog post to write down three words you think of when you hear the word ‘disease’. Here’s mine – sickness, broken, unwell. For me, what it means to have “Parkinson’s Disease” has changed over time. For a large part of that time though, I have not felt sick. I don’t feel like I am ill. I understand that the term ‘disease’ covers a range of things. But if I have “Parkinson’s Disease” that means I am sick for the rest of my life. It locks me out of wellness, forever. Like Kitty, I’ve played around with ideas about how to refer to this thing that I live with. It may not seem like an important thing to be worried about, but actually what you believe about your reality is very powerful. And words affect that. Nope, feeling good is not for the likes of us. I too prefer “Dopamine Deficiency Disorder’. It refers to the fact that something doesn’t function the way it should, and names that thing – I lack dopamine. My brain doesn’t make it the way its supposed to. But it doesn’t condemn me to a future of […]

Paradigm Shift Please!

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Let’s open a can of worms. It’s something that’s been bothering me for some time now and I believe it’s the right time to call it out. It’s one word. Seven letters. Not that large, but the consternation and discussions I have had around it astound me. I’m going to write the word out for you and I want you – yes you – yes really – to write down the first thing you think of. Actually, write three words associated with this little, ickle, harmless word. D I S E A S E I know. It’s just a word. I’ll admit that personally I don’t actually care what one chooses to call this thing, this awful unwelcome companion. Yet many people are deeply unhappy with the word’s use when discussing The Shaking Palsy. Now I must point out that I’m not ungrateful to James Parkinson. He was clearly an intelligent man, calling for improvement of many things, including the protection of the mentally ill and universal suffrage. However, his name was given to lots of stuff, including quite a few fossils. He was very into palaeontology. Yet he himself named this thing ‘The Shaking Palsy’ or paralysis agitans. Now. […]

Spiralling, Spiralling

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This may surprise you, but I frequently feel like I just can’t do it anymore. Its like this blackness washes over me, and I struggle to recognize what is happening, and where to find the light switch. This is familiar scenario. I’ve put a lot of time, effort, work and research over the last few years building my toolkit for dealing with this shit. And yet it still surprises me to find myself feeling trapped in the pit of despair, unable to see the way out I’d signposted on a previous trip down there. I lose my connection to the things I’ve learned; I start to feel hopeless, and I lose my drive and motivation. I start to feel angry too, and spend a bit of time in the pit raging at the inequity of it all. I stop going to karate. I stop writing. I decide all that is screaming into void. No-one is listening. No-one cares. What is the point of fighting? To resist is like endlessly pouring energy into a black hole; let up, even a fraction, and you are sucked in. It is hard to pin point what starts me spiraling down, there being a lot […]

A Picture’s Worth A Thousand Words

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Images Are Important They say a picture is worth a thousand words. Images are powerful. Which is why I’m horrified when I look at some of the images that are used by organisations that claim to help / support / provide information to those people that are affect by Parkinson’s. Why, why, why is the first image you see usually an aged person? I tried to find statistics (not that hard because I’m lazy) but all I can easily find are facts that 1% of the population over 60 are diagnosed. I’m not entirely certain how that can be true. I live in New Zealand, in a small area north of the capital, Wellington. If less than 1% of the population under 50 are diagnosed, but it’s 1% ish across the country, how is it that I can name six people in my immediate circle of neighbours, friends, etc that have Parkinsons? Four of them have official early-onset. The numbers are at best, very unclear, or completely wrong. The people in this club we don’t want to belong to are all under 65. (One is 62 and skews the numbers – boo!) None of them look like our friend the […]

What’s in a Name? The Living With Parkinson’s Blog

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Disease or Condition? I had a call from a friend yesterday that had been reading my blog. She asked me why I kept referring to Parkinson’s with the word ‘Disease’, as she knows I hate that term. I explained that it is a new website and I wanted to attract the widest traffic I could, therefore using the term ‘Parkinson’s Disease’ was kind of useful. Especially for those who might be newly diagnosed and perhaps unaware of the modern approach to dropping the dreaded ‘D’ word. In addition, I think a lot of people in the USA use the term Parkinson’s Disease or PD. I didn’t want to skip anyone. Yet she made a good point. I much prefer the possessive term “Parkinson’s” when referring to what’s wrong. Some people like to call it a ‘condition’, and I don’t have an issue with that either. Who wants a disease? It makes you think of pestilence, the pox, sores, boils, something hideous and contagious. Simply calling it Parkinson’s does somehow feel slightly more palatable, even if it doesn’t quite help my symptoms.   This is actually a virus, but hey, who’s paying that much attention? Why do people care about the […]

I’m The Greatest!

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The Muhammad Ali Approach to Affirmations Last year for Christmas I bought a ‘Big Life Journal’ for my two boys. It’s a guided journal with a series of research-based activities and resources to help kids build positive “growth-based” mindsets. The one we got was for “tweens/teens”, but there are different versions for younger kids. My eldest took it as a hint that we didn’t think he was good enough. Which wasn’t the point at all, but I can see how he got there. Recently I’ve taken to looking through our now teenager’s abandoned copy and seeing its emphasis on your dreams and what you want to become. One of the messages coming from this and other products of its ilk is that you will spend a lot of your life working, so the only way to be truly satisfied in life is to love what you do (to paraphase Steve Jobs just a bit!). Explore your interests, discover what you love doing, envision how to spend your life doing these things, then plan a way to give this dream to the world. Yeah, right. Okay, what if life gives you Parkinson’s? Huh? Is there a chapter on coping with sucky […]

Independent Living

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Moving On Alone 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 […]