Someone reminded me last week that I have committed to recording the progress of my Parkinson’s journey, so here I am.
Please note, I use the word journey, not battle. Battle would suggest I’m in some sort of conflict that can be won and that’s unfortunately not true. This is a one-way journey and there’s no dream destination at the end. I hate it when a cancer sufferer is said to have ‘lost their battle’ with the disease, as if some how they should have fought harder to win. That’s crap! Everyone just does their best with the cards they’re dealt and my hope is, with the continued support of my family and friends, to manage the hurdles of PD as they arise and by monitoring and recording my symptoms and trying viable treatments, to add something to the body of knowledge surrounding the disease before it overtakes me.
If you're not interested in my random ramblings, please just scroll on by, but if you’re intrigued by this journey of disintegration– as I am on some macabre, objective, outside looking in level, here’s the next episode of what’s been happening to my brain.
Since publicly outing my disease, my heart has been warmed by people asking about my health and from some truly beautiful, encouraging messages that I've received. Mostly the tone is, ‘how’re you going?”, with the emphasis on sympathetic tone and a willingness to help if they can. Sometimes though, it’s a whispered query, with the emphasis on the hidden thought, “thank god it’s not me!” I understand both responses and whilst I totally appreciate and welcome the concern, I also find it a bit confronting, because it reminds me that I have a disease and pity is the last thing I need. The best responses have been the simple ones, some black humour, people taking the opportunity to just check in for a chat, to spend time with me, or to understand that sometimes I have to say no to things I would usually help with.
So, how am I, really? How’s it shaking?
I’ve started on PD medication, the first line management tool. Unfortunately, it nauseates me, like really gross, disgusting, feel like I’m about to vomit all the time nausea and it worsens my ever present vertigo. Also, I’m not entirely sure it’s helping the tremor, although people tell me it’s less obvious on the outside, so maybe it is. There’s a huge vanity element in the presenting symptoms of Parkinson’s so I’m willing to stay sick on the inside if it makes me look more ‘normal’ on the outside. Ginger tea helps with the nausea, (so does brandy), and if I discipline myself to eat oats every morning for breakfast, I can cope. Along with my VILIM ball, a complicated sort of mechanical fidget spinner (which may or may not be a very expensive placebo), and a mind technique of reverse concentration that I’m slowly developing, I can still fool most people most of the time that there’s nothing wrong with me apart from encroaching old age. Thankfully my favourite Cat doctor found a treatment for my chronic back pain so I’m hoping an increased ability to exercise will help keep my gait straight and limbs flexible for longer. I’ve become a bit obsessed with checking my Apple watch stats on step length, balance and step variability and I have a drawing app that I’ve mastered so well that it tells me I have 0% likelihood of having Parkinsons 😂
I’m very tired- all the time. Shaking is exhausting. The hand tremor is one thing. When I get agitated or over tired or upset, or angry or any normal human emotion other than neutral, it flaps. And to stop the overt flapping I tense it, trap it with my other hand or sit on it. And so then my other hand or leg gets tired from resisting. If only I could channel the energy of the flap into something useful! The other tremor I have (so far ) is in my legs but its internal, so it manifests as constantly constricting nerves and muscles- like a never ending, whole body tens machine. No matter how tired you get, sleeping is problematic when you can’t relax.
Other brain stuff- remarkably I have regained some sense of smell. I need to ask the neurologist about what that means but I'm enjoying the odd whiff of things I can no longer identify. My handwriting has deteriorated to the stage where my signature suggests I have a medical degree. I can’t always find the words I want to say when I need them but I’m getting better at playing charades with myself. I have some short term memory lapses so list making is essential. But also, it’s a great fall back excuse for my lifetime of disorganisation.
On our walk this afternoon, it occurred to me that life with PD is a bit like the beach was at Lady Bay today, covered in blue bottles. You always know that there are blue bottles in the sea but usually they’re hidden, or scarce, and so you forget about them. Truthfully, most days, when I’m at work and my brain is engaged, I feel pretty great and I forget that I’m sick. Sometimes, when I’m totally immersed in a task and in a state of Flow, even the shaking stops. I’m incredibly lucky that I love my job and I work with amazing kids and staff. School gives me a reason to get up each day.
But on bad days- the blue bottle days, the mental struggle to stay positive is all consuming. Probably due to the lack of dopamine in my system (not sure if this is medically true because I’m still refusing to google), there are days when the slightest thing, or in fact, no thing, trips me into a spiral of tears and terror. This is the worst symptom so far. This is the battle in the journey. Because my life is good, great even. I have so much to be grateful for. But occasionally the blue bottles taint every positive thought with threats of my limited opportunities and seemingly imminent decline.
That’s the reality.
The biggest message to anyone else who is dealing with a degenerative disease diagnosis – it’s not all bad (yet). Life goes on and the knowledge that you’re about to lose some of the good bits really helps you to appreciate them in the moment. Just beware the blue bottles!
Thanks to everyone who's supporting me to keep on keeping on.