In our ‘Day in the Life with Parkinson’s’ series, we hear from our Shake It Up supporters about their day-to-day experiences while living with Parkinson’s disease – from their routine and treatment strategies, to the challenges – both physical and mental – they may face. Parkinson’s disease is a unique condition. Not everyone will experience the same symptoms, and the order in which symptoms appear and progress also varies from person to person. This makes each person’s Parkinson’s journey and daily life markedly different, yet many will have shared experiences. The aim of this series is to grow greater understanding of the realities of life for more than 200,000 Australians currently living with Parkinson’s disease. Here is Andy’s story.

I take my meds at 7am and work through the initial slump that I feel when I get out of bed. At first it is not that bad. My fingers are not so snappy on the keyboard, I dribble a little and struggle to get the words out. There is nothing wrong with the volume, it’s just that I talk too fast and one word will go into the next.

I watch the minutes slowly countdown to 8am, just waiting for the first rush of the Sinemet. My saviour. My head clears and I can sing. I can make the silly sounds of the magpies and the distant kookaburra; I sing along with INXS and recite The Man From Snowy River. I almost feel normal.

A cloud starts to roll over me ay 10am. The NUEPRO patches that I juggle are not reliable. The side effect, a feeling of insects running up my legs, no longer affects me. The anxiety that used to cripple me in the morning is no longer there. But I do wonder about the impact that it has on my sleep. Or is the waking up just another of those non motor symptoms that is often written about. I have reduced my BP medication under the guidance of my local GP. I have removed the diuretic. God knows how that darn pill has affected me over the years. The price you pay.

Back to 10am, I feel like my mouth has been stuffed with cotton wool. I really have to focus and say each word with awareness. I do not shake, which is a relief, and I do not have dyskinesia. The DBS has sorted that out. Thank God. It feels like someone has thrown a wet blanket over me. If I can just stop, close my eyes and rest, it will soon wash over me and hopefully the 10am meds will kick in. Until they do I am quite useless.

This is where the NUEPRO patches are supposed to kick in and give me a raft back to a somewhat, rather jaded hiatus from this ever ravaging  disease. I weather the 10am slump, and get back to my keyboard. I exercise extensively, even when I feel my absolute worst. Somehow, I manage to get up and onto my ever faithful elliptical trainer to absolutely thrash this machine. Don’t worry, it never complains! With the voice of Stacey, my iFit online trainer, forever cheerful, urging me on, just for an instant – ever so small – I forget that I have PD.

4pm rolls around and if I am lucky, if the meds are going to behave and do their job, the coming off may be a little shorter. I recently started taking a trial drug. The first couple of weeks all I can say is that I felt jetlagged. So, I backed off and just took a single pill a day. It has been a couple of more weeks and now I have bumped it back up to the full dose, 2 pills a day. I cannot say if this is helping me yet. It has just gone into the mix, the crazy mix of all of my meds together.

From 5pm, I will take a dip into my plunge pool, the colder the better. Then I will take a hot shower, this makes me come alive. My skin tingles and I feel great but can feel myself coming off the meds again. So I sit back and my beautiful wife puts a large glass of red wine beside me and I just rest and relax . At 7pm I am ready for my next dose. I gobble it down along with a new pill.

So, I take the last dose of Sinemet for the day and I sit back and watch the Bachelor – tragic isn’t it. By 9pm I am cooked for the night. I then swallow 2 Circadan and head off to bed to read. Liz will build a fortress of blankets and pillows around her and my side of the bed. I have been suffering from REM sleep disorder. It is when you are fully aware, not fully awake, and act out your dreams, usually at the chagrin of my wonderful delicate wife. Can you imagine what it is like lying next to a 99kg martial arts expert that is fighting in his dreams. Oh my. Luckily since I have been on this trial drug, the REM sleep problem is much better.

It got pretty bad for a while, I dreamed that I had been thumped in the teeth, only to wake up and realise that I had actually punched myself in the mouth, chipping my tooth.

Tomorrow will be a better day.

Hear more from Andy on The Shake It Up Show, a Parkinson’s podcast hosted by Amy Ruffle. 

You can also learn more about Andy’s story in his latest book, Warrior Upgrade, available on his website.