A day in the life

Marie was saying last week how I don’t perhaps get as much out of my time as I could, and in the right mood I can be persuaded to agree that this may contain a grain of truth. So let’s have a look at my day and see what time and energy Parkinson’s leaves me for doing things I want to do (or that she wants me to want to do).

3 am. Well, a typical day now starts rather early with me waking up around 3 am. Sometimes I fall asleep again unaided, but usually I have to give in and take a sleeping pill or I would remain awake, fully awake which is not a whole heap of fun in the middle of the night. With the pill, though, I wake again at 7 am – but the price is that I stay drowsy until mid-morning.

7 am. On waking up I take my Sinemet (L-dopa) pills and wait for them to take effect, which anything from 30 to 60 min for the stiffness to ease. I still have some twitching throughout the day, but the L-dopa reduces it some, and I guess I am also just getting used to it. So that at least is a good thing. I also take a high dose of Q10 as we have read somewhere that this may have a slight delaying effect on the progress of the disease. I don’t generally believe in alternative medicine, but hope can make you willfully gullible.

8 am. My breakfast is Wheatabix, not by choice but because the bowels also suffer from Parkinson’s and I now tend towards constipation. Such fun. Anyway, I cheat the health brigade by having lots of sugar on it.

8:30 am. And then for the challenge of the shower and of getting dressed. Actually, the shower itself is okay, and the L-dopa has given me back the pleasure of a wet shave, but it is getting more difficult to dry myself off now because I am too stiff to reach round my back or lift up my legs high enough. For the same reason, I find underpants/ trousers / socks tricky, while t-shirts are still okay, as are shirts so long as they come ready-buttoned. A sweater over a shirt is almost impossible without help, though – if I try on my own, I invariably end up looking like Quasimodo’s uglier cousin. All in all, the whole process, which used to be over in 15 minutes or less, now takes upwards of an hour, and I need a little rest at the end of it.

9:30 am. Twice a week I go for a physiotherapy session in the morning which involves a ten minute drive each way, plus a ten-minute struggle at each end to get into or out of the car. If I need to see my GP I can walk to his surgery, while my other less regular health appointments – neurologist, psychologist, works doctor etc. – are all so far away that Marie always comes with me as driver. Most weeks there is at least one such ‘extra’ appointment.

And otherwise I spend my time reading – both the newspaper, books (usually non-fiction and often work-related), and articles (always work-stuff) – checking e-mail pretty regularly, trying to work on writing this book we keep talking about, editing my collection of photos, searching and surfing the net.

Noon. I take the next batch of L-dopa at noon (if I forget, my trembling starts to get noticeable again pretty quickly).

I don’t eat an organized lunch, so day-time food is mainly grazing on bread and fruit and that sort of thing. In the afternoon I do much the same as in the morning. A couple of times a week I also find a reason to walk down to the centre of our village where the shops and post office and health centre are. And in between these things I probably watch 1-2 hours of TV in little bits of ten minutes here and 15 minutes there.

3 pm. I usually take a half-hour nap (or fall asleep where I sit) mid-afternoon, followed by more of the same as above. I must admit, though, that even though on paper it looks like I spend a lot of time reading and writing, at the end of the day I have disappointingly little to show for it. I always enjoyed finding things out more than I enjoyed writing about what I had found out, but as things stand now I don’t have access to a lab so am kind of forced by circumstances to spend more time than I would prefer on that part of my job that I enjoy the least.

5 pm. I take my last portion of L-dopa at 5 pm. After that I am frankly tired out, whether from having done stuff or, to be honest, from having struggled and not done stuff, so the rest of the time until dinner I spend mainly on staring vacantly at the telly. Twice a week I cook dinner, and although the meals I produce are usually fairly simple, it takes me a while. I enjoy it a lot, though, both the cooking and the eating.

7 pm is our normal dinnertime. Afterwards I wash up. Recently, I have also started to spend 15-20 minutes every day trying to learn my strange wife’s strange native tongue with a self-study book and her there to practice on. We have had several false starts at this, but I think this idea of a short time every day will work – it’s enough to feel that actual progress is being made, yet not so much that it becomes a dull chore.

8 pm. Afterwards, I might watch some more telly, or go and check e-mail again, or read a bit more. Because my sleep is not perfect (though far, far better than it has been), I get tired pretty early in the evening and regularly drop off. But I aim to stay up until at least 10 pm when I’m beginning to twitch again.

10 pm. I usually go to bed around 10 pm, so that is when I take my first sleeping tablets. I have experimented with taking more pills early at night to avoid the 3am pill and thus avoid the morning drowsiness, but that does not seem to work.

So, is this the active and rewarding life Marie would like me to have? Certainly not. Is it the productive yet leisurely life I hope for? Not really that either, there’s too much frustration at the lack of progress for that. How can it be improved? Answers on the back of a postcard, please! If I don’t get myself sorted out soon, I fear Marie may well have another go at ‘organizing’ me, and that is best avoided for both our sakes …