Blue Bottles

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. 

Victory

 

For a parent, what is the measure of success? For me the goal has always been to raise kind, productive, happy humans, who have the capacity to value add to society.

With his big sisters already independently ticking those boxes for some time now, today, I'm claiming my Successful Certificate of Child Raising because this is the day that the youngest of our blended brood turns 21.

Of course, I've written about this 'special' child before, here on my own blog when he turned 10,http://annedemanser.blogspot.com/2013/07/mr-miracle-turns-10.html and later, when Mamamia asked me to do a feature on older mums https://www.mamamia.com.au/older-mum/ . But, 21 is special, and it's something I wasn't sure I'd ever get to see, so I'm indulging myself another time.

As his father articulated at his birthday party last weekend, Taine has always been a bit extreme, beginning with the fact that he was extremely lucky to have been born. I'm not religious so I don't believe in miracles per se but it's hard not to believe that somehow the stars aligned to bring Taine into the world. It was a sliding door moment that led to his conception (TMI, I know- sorry), but if our friends had come in for a coffee after dropping us off after the staff cocktail party, we probably would have been tired and sober enough to just crawl into bed to sleep, but they rain checked the coffee, and we weren't tired, or sober, so...

6 weeks later I found myself on a gurney in the X ray department, looking at the ultrasound screen , steeling myself to be told about yet another blighted ovum that would need a D & C. Instead I saw a tiny, blinking light, a heart beat. A. HEART. BEAT!

A natural conception at 45, with one severed Fallopian tube and the other damaged. A one in 100,000 occurrence they told me. Another 6 weeks later, the stakes grew higher with a CVS to test for genetic abnormalities; a 1 in 7 chance that there'd be problems to prepare for. There were no problems. Weekly monitoring for my 'advanced' maternal age? Unnecessary. After planning for an induction if I reached 41 weeks, my water broke on his due date and bingo, 'elderly' me gave birth, without intervention, to a perfect baby boy - it's no wonder we've never won Tattslotto. That sort of luck rarely strikes twice.

We called him Taine, an acknowledgement of his Kiwi heritage - for Tane Mahuta- god of the forest, Taine Randall - All Black legend and Taine Ruaridh Mhor - a tall, red haired Scotsman said to have arrived in NZ in the 12th century. Surely the most researched name in history! Interestingly, Taine is very tall, his beard (and sometimes his hair) is red, he's definitely a nature lover and given different circumstances his speed may well have lent itself to rugby.

And then the baby grew. And grew. And grew. He refused to sleep until he was 5, broke a couple of bones, struggled to learn how to read the first 100 words, never learnt how to put a dish or a piece of clothing away, lost everything he owned at least once (wallets, keys and phones multiple times) and ate everything that was put in front of him (or hidden in the cupboard). Otherwise, he was a drama free individual. He visited 14 countries before his 14th birthday, crossed the Tasman more times than we can remember and relished in his role as the 'funcle' to his growing brood of niblings. Suddenly he was over six feet tall, finished school, left home and able to wrap us in the best bear hugs imaginable. And when I say suddenly, legitimately I mean the aphorism, 'its gone in the blink of an eye' is true. Every second was precious. Don't we all wish time would allow us to linger in some of our children's moments for longer?

As a wee baby he came to school production rehearsals in his pram. By 3 he was insisting on a new costume for every occasion and turning every opportunity into a performance. At 5 we took him to a professional stage play in Melbourne and he analysed the plot before most adults had time to take their seats. On the soccer field he would wear his playing bib as a turban and do interpretive dance in the defence line. Despite playing footy & cricket and all the other things that country boys are 'supposed' to do, he's always been a performer, weathering the storm of bullying and rejection that inevitably comes from stepping outside your assigned box, and growing all the more resilient for it. We added singing and dancing lessons to his weekly routine of footy/cricket and swimming training and bathed in the sunshine of our son excelling in a theatre world that we had learnt to love.

At 21, he's found his place with a beautiful tribe of creative souls at uni and is loving life. It's yet to be revealed how that Art's degree will make a difference in the world, but the storytellers throughout history have always been vital to the health and well being of society so, I'm confident there'll be a ripple effect somewhere from his serendipitous conception. In the meantime he's already pretty good at lending his bartender's ear to the woes and worries of his customers, and his shoulders to the friends who need him, (and bear hugs for his mum).

Glitch

In his movie, "Still", Michael J Fox describes the first moment he discovered there was something seriously wrong with his brain. He says, "A moth's wing fluttered against my cheek", and when he moved his hand to brush the feeling away, his pinky finger kept fluttering; it was 'auto animated'.

I turned the movie off at that stage - about 2 minutes in, because the resonation of that image had just given me a self diagnosis that I wasn't yet brave enough to contemplate. It was August last year and the week before we'd been driving to school and that same moth had fluttered its wings on my thigh, where I suddenly found my right hand 'auto animated', an alien. appendage that, despite all the focus I could muster, refused to do what it was told.

I'd not long had Covid (again) and chose to think the tremor was an after effect. I went to the doctor, passed the finger to nose test, the reflex test, the stand on one foot test and I walked the straight line as sober as any judge. But it turns out there's only a few things that can cause a resting tremor. Brain scans and an MRI ruled out a stroke or tumour- something to celebrate. Blood tests ruled out vitamin deficiencies and hormonal imbalances. And so, in the absence of any other possible reason, the doctor, and the specialist doctor after that, and the second opinion doctor after that used the word Parkinson's. I preferred the word denial. Hadn't I passed all their tests?! I tried to prove to myself I was ok by taking on a few extra responsibilities at work. But Parkinson's answers too  many of my random ailments over the past few years to ignore it- anosmia, vertigo, joint pain, restless legs, insomnia, fused ligaments, illegible handwriting :-(

So, here I am, launching this new, shaky chapter of my life, avoiding Dr Google (still in denial) and re evaluating life goals. My pipe dream of living a long, productive life ending in a gentle demise in my 90 yr old sleep, is lost. There's nothing productive or gentle about end stage Parkinson's :-(  

I can hope however that it takes a long time to progress that far and anyway, maybe a different bus will hit me before then. In the meantime, my 366 project takes on a new meaning; I will #makethemostofit. There'll be no more sweating the small stuff for me. I will suffer no more fools or let unkind words or rotten weather ruin my days. I will stop worrying about what other people think of me and concentrate on thinking the best of everyone else. I have plays to enjoy and places to explore and grand children to watch grow. I will continue to get out of bed every morning and do those things - until I can't.

Clearly, I'm feeling very sorry for myself but this is definitely not a plea for pity post - public writing has always been my go to therapy and I simply don't want the stress of explaining the diagnosis face to face or the distress caused to others by me crying when they tell me how sorry they are for me. So far I'm doing fine. My brain is still a disorganised but reasonably creative sieve, and while I have some aphasia, I start with more words than most people so I have plenty of spares. I can still solve Connections and Wordle in under 5 minutes. 

I'm not sure yet how to turn this major negative into a positive but I'm open to suggestions. I can't be a famous Parkinson's pin up like Michael J or Alan Border but I know that documenting illness journeys always adds to the body of knowledge for incurable diseases, and so maybe my story will unfold to reveal something that helps someone else down the track. At the very least I will add my voice to those advocating for greater awareness of, and funding for the disease. And continue to live my very Ordinary Life.