I'm not pregnant, I just have Parkinson's

JON: I’m fat. For the past 30 years or so, I’ve maintained a constant weight – around 80 kg, not fat and not thin, just convex enough to be cuddly. It never seemed to matter what or how much I ate or drank, my trousers always fitted without additional engineering such as belts or braces. Possibly I was one of those lucky people who fidget away any excess calories without even thinking about it, and certainly without thinking about exercise.

But now I’m fat. Not slightly overweight, but FAT. Actually, PD is supposed to make you thin as you shake, rattle and roll your way through life and dribble out half the food you try to eat. My problem seems to be that my medication is working rather too well at the moment

The burning (BBQing?) question is: how did I get from there (a handsome well-proportioned figure of a man) to here (a fat git with braces and a potbelly). One way to look at it is that I fought anorexia, and won. My first symptom was back pain which was treated with morphine which reduced my appetite – so during that period all I ate had to be high in calories because it was so low in quantity. Even so, I began to loose weight, so much in fact that my trousers became loose and I had to learn to keep a hand in one pocket to prevent serious trouser malfunction.

Trouble is, once we had the pain under control and the correct medication for the Parkinson’s, my appetite came back but I didn’t change my diet, or not quickly enough. At first this seemed a good thing as I grew back into my old trousers. But my appetite has just increased and increased and increased, possibly because of the PD drugs which are known to mess with people’s lusts so some become gamblers, others sex maniacs or shopaholics. Me, I’ve just become permanently hungry, and trousers have become a perennial problem. Once, after friends had cooked us a lovely dinner, I was hungry again within minutes and actually asked if they happened to have any cheese about the place! Marie was mortified.

Now one size of trousers is very, very tight and makes sitting down difficult, while the next size is too loose and won’t stay up. So, going for comfort, I experiment with belts and braces. The problem is that the belt buckle traps itself under the great abdominal bulge where it feels very uncomfortable. The other option is braces, but get them too tight and they pull down on the shoulder so you feel like you’re carrying a heavy rucksack (or size EE silicone breasts, perhaps). And just to add insult to injury, I can’t get a belt through the loops on the trousers without Marie’s help, nor can I fix my own braces to my trousers unaided.

I understand the appropriate expression is that inside every fat man, there’s a thin man shouting for more cake…

Intermittent faults

We bought a new computer at the start of last week, and life has never been better – NOT. My sister-in-law is quite scathing about the state of new computers, pointing out that no other industry would get away with selling products in such a shoddy state of half-finished mess. Who would buy a shirt with half the seams still to be sown, a collar that only works if worn with an expensive scarf, and all the buttons provided in a separate bag? That, she claims, is the state of most new computers, and it is hard to disagree.

Most of my week was spent fighting our home network, trying to coax various bits of the machine into communicating, rooting around to locate old software install disks, etc. An absolute nightmare, and not even over yet as we have had to conclude that some problems can only be down to hardware failure (a non-responsive USB port and a network card with that hateful thing, an intermittent fault). In fact, this is a pretty good metaphor for Parkinson’s. On good days, most of your body works with only minor patience and jollying along needed, while on bad days parts of the body system just refuse to respond at all. At times the shifts can be really sudden. You’re walking along fairly happily and BANG your legs stop working and your feet stick to the ground (so moments later it starts to rain). Such fun.

Positive development of the week, though, is that I have started to see a speech therapist, and that much to my surprise her suggestions seem to be rather helpful. Okay, the first session was spent teaching me how to breathe, a task that I have successfully accomplished without outside help for the last 50+ years, but it now appears that I have been doing it wrong, breathing in when I should have been breathing out, or possibly vice versa. That didn’t impress me too much, but subsequent sessions (3 per week, so this woman really has a lot of time for me) have focused on getting me to speak louder and slower, and on getting rid of my Parkinsonian tendency towards a pre-pubescent pitch. I can do it, but not for long (yet), so much of the work involves recognizing the problem, becoming aware of when my speech slips, and training to make clearer speech more like second nature. By the way, when Ms Therapist took my history, she asked if I thought my wife was going deaf as apparently lots of Parkinson’s patients simply refuse to believe that the problem is with their speech. I don’t think Marie is going deaf – lots of people have been asking me to repeat things for years – but in a show of loyalty she had been wondering about it herself.

My speech problems also involve my mouth being generally rather dry and going completely, spectacularly arid when I am stressed – my tongue sticks to my palate, my lips stick together, I can’t swallow, and pretty bloody miserable it is too. The general dryness may well be a side effect of drugs, although I manage also to suffer from the more common Parkinsonian dribble (which is not actually caused by too much saliva, but by ‘forgetting’ to swallow).

Dry mouth is annoying, arid mouth debilitating, and dribbling rather embarrassing. Sipping water gives some instant relief but is of little long-term help as water is too wet – basically, what you want instead is something slightly slimy like saliva that will coat the surfaces of the mouth and stay there. Thus, if I weren’t already straining against my belt, I could perhaps solve the problem by sipping cream or constantly sucking lemony sweets. As it is, the only other option is fake saliva made, somehow, from pigs’ intestines. I have tried it, and believe you me: I’m not going there again!