My husband the drug addict

MARIE: Like anyone else with Parkinson‘s, Jon has become a drug addict in the truest sense of the word. He cannot live without his drugs. Not like a heroin addict who’d have a horrible time and might suffer life-long cravings if he stopped. Jon is a real drug addict and would have approximately zero quality of life without his drugs.

As he said here a few weeks ago, his daily schedule revolves around the drugs. First thing in the morning I go, like some wild-haired drug fairy, and wake him up by popping the first five tablets of the day into his mouth. Well, in actual fact he is often awake already and impatiently waiting for it to be drug time so he can start regaining control of his body and be able to get up.

The rest of the day is punctuated by drug taking (another 20 or so tablets in the course of the day) and defined by drug effects. Jon still gets quite predictable effects from his doses (unpredictable fluctuations are a hallmark of long-term dopamine addicts), so he/we can plan activities around his good times. We know not to plan a medical appointment for 11 am when he is at a low ebb, but make the most of the high tide between noon and 2 pm – etc., through the ups and downs of every day.

With his wellbeing so firmly in the grip of pharmaceuticals, it’s no wonder that a lot of Jon’s attention is focused on when the next dose is due. A lot of mental energy goes into waiting for drugs to take effect, or waiting out the dip before it’s time to take more. It’s a very inward-looking and, I sometimes think, a rather counter-productive focus – but understandable. Jon has alarms set up on his mobile to go off when his daily doses are due, but man and machine are not always in the same place, so he keeps asking me what time it is, and when he’s napping I get to play ‘hunt the phone’ and yell up to Jon that’s it’s now.

Being out and about requires drugs to be carried at all times, and preferably a drink to take them with. Jon usually has a bit of everything on him, and I carry emergency supplies of about a day’s worth of drugs in my handbag in case something should happen to keep us away from home for longer than expected – a puncture, an accidental meeting, a sudden desire to eat out. In fact, my small stash never leaves my handbag so I also carry it with me when I’m out on my own. Since Jon has started on the Ritalin, I think that makes me a criminal as I am now carrying a controlled substance not prescribed to me. Very edgy.

Speaking of edges, one place where I’ve put my foot down is the brinkmanship Jon used to practice with his prescription renewals which several times left him with less 24 hour’s supply in stock. That’s a bit too brave for my taste, and since the recent problems with the supply of a widely used L-dopa product, Sinemet, Jon now agrees. We try to have at least a week’s supply available at all times, although it does mean traipsing down the pharmacy on a very regular basis. Some drugs he gets 3 months’ supply at a time, others only four weeks, and of course we’ve not managed to synchronize any of it. Being ill takes a lot of time and effort.