Wednesday 13 April 2022
Five years ago, I wrote about a typical day with Parkinson's. I was still working full time then, something which I certainly couldn't manage now.
My bladder decides to wake me at 4 am. I struggle to roll out of bed - stiff hips, legs and arms impede my movements but eventually I stand up and start my shuffle to the bathroom. In some ways the early mornings, when all the medication has worn off, are the hardest part of the day. My bladder is not full, but the excessive urge to urinate in the night, technical term ‘nocturia’ is a common symptom of my disease.
I do the daily Wordle before returning to bed and get the five-letter answer after four attempts: BEAST, PROUD, QUICK, CHUNK. I swallow my daily tablet of prolonged release pramipexole with a sip of water to hopefully take the edge off when I next awaken. Once back in bed I toss and turn for about half an hour before sleeping fairly soundly until around 7am. On the whole my sleep is perhaps the one thing that has actually improved since the early days, though I still have the occasional rough night with only two or three hours of slumber.
I shuffle down to the kitchen, put the kettle on and slowly squeeze a pouch of cat food into the cat’s bowl. He is over 15 years old now but he runs around my legs like a two-year-old, getting increasingly exasperated at the time I am taking to fill his bowl.
Clare is getting ready for work upstairs whilst I make a cup of tea and drink it with a hot cross bun (given that it is the week before Easter) in the sitting room. I watch the bin men do their thing through the front window. Needless to say, bin day is one of the highlights of my week, given that I now spend most of my time in the house. I round off my breakfast with fresh fruit – grapes and a satsuma – as a natural remedy for the constipation that has been bugging me for the last day or so.
I get dressed into my sports kit in anticipation of some exercise later and take the first of about eight 62.5mg Madopar tablets that will help generate enough dopamine in the middle of my brain to get me through the day. I take the pills every hour or two depending on how stiff my hands are. I still find it strange how much this ebbs and flows: sometimes I do not need much medicine at all; other time I pop my drugs like candy.
As Clare leaves for work, I settle down in front of the computer in the study. I will be working on my MSc project today, searching for hidden patterns in clinical data I have procured from several Parkinson’s drug trials. But I procrastinate by first checking emails, checking comments to answers I have posted to questions on Quora, reading some news headlines, and anything else I can think of before actually settling down to work.
I take frequent breaks throughout the day as I find I can’t work for much more than an hour or so at a time. So, for example, later in the morning I bring in the bins then I go for a short run. The most I can manage these days is to go round the block, a distance of around 600 metres. This only takes a few minutes but is enough to make my lungs feel like they are going to burst. It seems like a lot of effort for no reward, only suffering, but I feel certain these short runs are beneficial.
After a lunch break, using up some cheese and other bits and bobs left in the fridge, I am feeling pretty tired already so I have my first snooze of the day. A ten-minute power nap in the bedroom is enough to take the edge off and I feel re-energised for the afternoon.
I noticed at lunchtime that we are out of bread and milk and low on fresh fruit, so I take a brief trip to the local Tesco store which serves as another break. I try to shop in the afternoons when the supermarket is quiet. When medicated I can walk pretty well but I still often fumble at putting my shopping into carrier bags at the self-service checkout and am conscious of the people behind me in the queue.
I also snack on sweets and chocolate in the afternoon, another one of my mild addictions caused by the dopamine agonist.
I squeeze in another quick nap before Clare comes home a little after 6pm. By this time I am no longer productive at my studies. Around the same time,
I take my last tablet
of the day, so as the evening wears on, my movements become stiffer and I begin
to struggle with simple tasks like opening a packet of crisps. I often use a
spoon to eat my dinner when previously a knife and fork would have been the
tools of choice.
This evening it is quiz night with the South London Younger Parkinson’s Network, so Clare and I join the Zoom call between 6:45 and 7:30pm. We have lucked out with the topic which is ‘art’, something which Clare knows a lot about and I know a bit about. Between us we score 24 out of 25 and win the quiz for the first time against ten other participants. There are no prizes, just a warm feeling of smug satisfaction.
Later in the evening I pour a glass of whisky and start to write this post. But my hands are getting painful now so I only get halfway and decide to finish it in the morning.
I head to bed around 11pm, shuffling around the house again in a mirror image of the way that the day started.
