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 […]

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 […]

Positive Affirmations

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Positive Affirmations Emma wrote recently about Mohammad Ali and how it created her own motivational mantra. How positive affirmations helped her feel some much better day to day. I used to think that mantras were just for the hippies. The brown rice and sandals brigade. (Disclaimer – I own both brown rice and sandals) However recently I’ve become very interested in the power of this. Why? Well there is a lot of talk around our ‘stages’ of Parkinson’s and how we need to live in the now, because clearly the future is not bright, so throw away those shades. (If you’re wondering what that is all about, I’m showing my age…) Everything I read about Parkinson’s tells us that ‘this will happen’ and use terms like ‘you will.’ I don’t personally like these terms. Why? Well it’s simple. I believe it creates a self-fulfilling prophecy. If I continually tell you that ‘you will feel bad when you see me’ then eventually you will feel bad when you see me. It’s the same with Parkinson’s. Well, I think it is. I know that to some extent there is nothing that we can do. I mean, I’m not stupid. I know that […]

A Day in the Life – Emma

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A Day in the Life – Emma Woke up, got out of bed, took a bunch of dopamine. Living with Parkinson’s sometimes involves some crazy swings and roundabouts in energy, and general feelings of wellbeing. Yesterday I gave a good demonstration of how suddenly and shockingly I can crash. I was making pancakes for lunch, we were having fun making extremely large plate-filling versions of this treat and filling our tummies. Just before 1pm I took my regular dose of pills and then I ate a very modest sized pancake. Then my husband went out for chainsaw parts, my teenager biked off to a friends, and I was left in charge of Maia (nearly 4 years old) and Luka (an incredibly wise nearly 11 year old). Maia and I went outside for some imagination play, while Luka curled up with a book. Before going outside I turned off the huge pot of pumpkin soup we’d made, thinking just to be on the safe side, I won’t leave that bubbling away. Maia and I got deep into a game that ranged about outside. By 2.30pm I noticed I was still limping, and my back ached all down my spine. My energy […]

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 […]

Exercise or Bust

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Pilates Power I have just returned from a Pilates class. I’m supposed to be completing a blog post for kittyfitton.com but I have got back, showered and changed and feel that this is more important. I’m approaching a kind of turning point in my Parkinson’s journey and I don’t like it. I was diagnosed about five years ago. In June it will be five years. We all know that in reality this means you’ve had Parkinson’s longer, but we just had no idea this creeping sickness was leering over us. I did what I think a lot of people do. I tried to ignore it. Then I realised with mounting horror that this wouldn’t work, so I began to try different things. I’ve never been much of a fad diet person. I don’t think platefuls of kale and a side of carrot juice is going to do much to fix a neurological disease. I do, however, believe in positive thought, and a ‘can do’ attitude. I did LSVT Big. I am not so great at doing this daily, and got bored of the exercises quickly. However, I’m still a huge advocate of this, and am certainly of the opinion that […]

If It Hurts, It Works

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Keep On Moving! Hello again, or as we say in New Zealand, Kia ora. I have been remiss with my usual updates. It’s been tough getting back into a routine. What has been especially tough has been forcing myself back into exercising. Nobody likes exercise, but those of us who are forced to endure this thing they call Parkinson’s know more than most that we have more reason to push ourselves. You would think this would spur us on, but it doesn’t always. I’ve never aspired to being a gym bunny, and I’m still awful at religiously working out. I’ve taken to doing the odd class at the local building of fitness, and yoga most days on a morning. First I’m going to deal with the yoga thing. No at first you might think that doing yoga every morning makes me some kind of Wellness freak. I’m a yogi, I praise the sun and I’m all bendy and lovely. No. You couldn’t be further from the truth. I have an app on my phone, and I use that. It’s set for Hatha Yoga, the explanation from the app explains it’s slower, more varied and has no chaturanga pushups. For the […]

Surprise!

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Wait… What? Surprise! Remember me? I know. It’s been a really long time. You know when people say they have good reasons to be absent? Oh my, I have the best. No really I do. I haven’t just been a bit busy, I’ve been wrangling with some serious stuff. I have it all. Drama, excitement, sadness, extreme sports, edge-of-the-seat tension, families, death, life, and of course love. Love is a constant thing with a lot of this. Love for friends, families and love of life. I’ll be honest. I can’t quite get enough of that last one. Some of you may be aware that I don’t like to be known as ‘the Parkinson’s person.’ Who wants to be defined by a disease? Not me, that’s for sure. I talk about not allowing the condition that affects me completely overtake me as a person. That’s really important to me, and I think it’s a healthy approach. Having said all that, I still see the need for people to be educated about this awful thing. And for those of us suffering? We need honesty from each other, yet positive role models and reinforcement of the message that this is not the end […]

Keep Climbing that Mountain

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Bodily Intimidation Last night I went to karate in glacier-mode. A glacier is a good analogy for times when I look like I have great potential to move, but I feel slow-moving and rigid. I tried to push through by jumping around and attempting various basic moves in the dance studio where we have taken to warming up in before class proper begins. But just before the class, while logging in the brown belt students in our attendance app, Sensei called ‘line up!’, and I made a snap decision to bail. It was the thought of limping past the young, fit and strong brown belts that put me off. And of potentially having to explain myself in front of them!   I do have a goal of one day joining the brown belt ranks. When I started karate that felt like an impossible dream, and yet every day I inch closer and closer. In spite of the odd set back (like what happened last night) I’m still working towards it. Along the way it is important that I don’t believe the thoughts and feelings that try to convince me I should give up. That I should be so upset at […]