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.
