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 supply was low. The pills I’d taken at 1 o’clock hadn’t really taken effect properly. Then I went inside and discovered I’d turned the element the pumpkin soup was on up to full power instead of turning it off.
I was horrified at myself. Amazingly the soup was saved, and the house didn’t actually burn down with Luka in it. But I raged and cried and beat myself up anyway. With an effort I pulled myself together but it was really quite hard to control my emotions under those conditions.
I’ve been conscious of what I eat for a while now, because there appears to be a big impact on my medication from food. Protein is often the culprit but volume is also a problem. I am eating as much as I can, but there is a limited timeframe each day when I can eat, and I can’t eat much meat anymore, and hardly any dairy, or eat anything more than a banana close to pill time, without a sizeable negative effect on my medication.
I really want my medication to work. Without it I’m in pain and movement is about 10 times more energy draining. It is also a mission to keep myself from panic attacks, or massive amounts of crying or rage.
This could be a part of why my weight has dropped a lot over the last few years, but I’m actually not sure why exactly it keeps dropping.
Losing weight is helpful in some ways, it seems to make exercising a bit easier. It is getting harder to find clothes that fit though, which don’t dangerously threaten to reveal my undies! I also really don’t want to lose anymore – I’m now 55 kilos, which apparently is healthy from a BMI perspective, but if I get to 50 kg I’d be underweight. It wasn’t really what I had in mind when I asked the universe for magic weight-loss powers!
If anyone else has experience with these issues, I would appreciate it if you could drop me a line, and let me know any ways of coping you’ve discovered.
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 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.
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