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!

Troubles small and large

The trouble with Parkinson’s is that it throws up such a large array of attacks on one’s abilities and self-esteem, some attacks tiny and annoying like those of gnats, some large and painful like African killer bees, with a few really serious rattlesnakes thrown in for 'good' measure.

In the gnat-department, I have developed a skin rash on my upper lip and around my nostrils. It looks like an ultra-bad attack of moustache-dandruff, and both books and neurologist inform me this is not unusual as an effect of PD. I have been attacking it first with normal dandruff shampoo, using an old toothbrush to scrape away at the deposits. That was getting a bit painful, though, and wasn’t having any long-term effect. So now that my official holidays have started, I have shaved off the moustache entirely and purchased the hardest-hitting anti-dandruff cream available without prescription. I now walk around with a semi-permanent cream-moustache, with an understory of my own re-growth that I hope will be reasonably established by the time I have to go back to work. It is a small indignity, but one of many. (Marie claims it is like having an affair with a bald-lipped man …)

The killer bee department, meanwhile, weighs in with a new owie: severe neck stiffness to add to my back pain. Almost any movement of my head or trunk hurts – sometimes just a little, sometimes a whole lot. It is as if muscles that have been OFF and just slightly bothersome suddenly switch ON to great and unpleasant effect. I’m still on prescription pain relief, weekly physiotherapy sessions, daily walks to loosen up the joints, and I have an array of aids such as my bag of microwaveable cherry pips for warmth, a DIY sander that Marie buzzes my back with at regular intervals (to the great detriment of my T-shirts, but so what), and a TENS system that applies electricity direct to the muscles. All of which provide fleeting or temporary relief only. Although my neurologist seems to disagree (though does not say so outright), I think it is the PD causing my neck and back muscles to go wild, but when I mentioned this to my GP a few days ago, all I got back was commiserations (‘oh, that must be nasty’ kind of comment). To be fair, though, he had just referred me to the hospital pain clinic, so what more could he do – refer me twice? I have been to this pain clinic before. First they made my life a living hell after a spinal injection, then they rescued me from the brink of despair by coming up with the first effective pain medication I'd had in a year. It will be interesting to see what they suggest this time.

At least I am still doing okay with my insomnia. That is to say, it is still there, but without the sleeping pills and antidepressants I was taking against the insomnia, I am now sleeping a little less but making a lot more sense. No way do I want to go back to those scary nights (and days) of drug-induced weirdness. Instead, I have prescribed for myself a largish drink to be taken when (not if) I wake in the middle of the night and have trouble getting back to sleep. It kind of works, and since Marie and I are by now almost tee-total during normal drinking hours, I don’t think it will hurt me.

And in the rattlesnake department lives the elephant in the corner (with an extended family of mixed metaphors). This elephant is pink, and answers to the ugly name of cognitive impairment. As I have mentioned before, I do not feel up to my old mental standards, for instance finding it harder to complete work tasks that used to be a matter of course. Is this Parkinson’s, or sleep deprivation, or normal aging? Marie and I have been studiously avoiding the subject until recently, and it’s been playing some havoc with our interaction. Basically, we have both been unusually quick to anger, which has served to mask the fear we both have but that is much more painful to articulate, that I may no longer be quite the intellectual giant I was. But this weekend at last we talked, and decided that what we need is an expert opinion – about whether I am actually impaired (could we have made the whole thing up?), if so what might be the cause, and what can be done about it. We were supposed to see my neurologist next in two months’ time, but have now moved the appoint up so we are going next week. In the meantime, I’ll try to stuff this particular elephant very firmly back into its cage.

Soft spots

I’ve just been in the UK again – one last dental appointment, and another opportunity to see the kids and grandkids. This time I travelled alone, and although I think Marie and I were perhaps both a little apprehensive about how that would go (will he fall asleep on the airport train, will he be able to get his shoes on and off for security control, will he lose his way in the maze that is Schiphol airport), once I got into it I was just fine.

The grandchildren were wonderful. I have been over often enough this year that they really know me now so we can cut out the coy/shy stage. My granddaughter of 2 ½ was sweetness and light and wrapping me round her little finger. She really brings out the best in me, had me crawling around under the table chasing lost crayons and playing silly games. I was amazed that I managed – but it was OK, somehow the medicinal effect of those big dark eyes just melted my stiff joints (or more likely produced a useful flood of endorphines). Just the thought of her makes me feel better.

My grandson of 4 months is still to small to demand much of me besides a soft lap to nap on (which I am exceedingly well equipped to provide). I think he will grow up to be a smart kid, already showing native intelligence in the way he examines everything in great detail (I know, I’ve gone granddad-soft-in-the-head).

Having been down to 75 kg in my morphine addict days, I am now at a record-breaking 93kg. All my trousers are too tight and I suspect the beginning of man breasts, worrying that chest hair can hide only so much underlying porkiness. I also have some knee pain, but whether that is related to Parkinson’s (bad posture and poor walking) or caused by me becoming a fat bastard is anyone’s guess. Anyway, the upshot was that my daughter took me out to buy new trousers from my life-long suppliers at M&S. I decided to go super-comfy and bought three new trousers with some room for growth.

When wife #1 saw me strutting my new style later that day, she asked if wife #2 had approved this purchase. When I answered no, #1 smirked knowingly. Numbers 1 & 2 get on frighteningly well, so #1 was of course entirely right about the reaction I got from #2 (who also wasn’t impressed by my braces and claimed that [braces + trousers 3 sizes too big = Bozo the Clown]). As I write, my wonderful new trousers are being boiled in an attempt to reduce their size and my braces are sulking at the back of the cupboard. So much for my attempt at hobo chic.

Walkies

I continue to wake very early, between 4 and 5am, but I’ve agreed a kind of ceasefire with my insomnia: I won’t try to get rid of it so long as it leaves my sanity (largely) intact. And lonely though 4am is, that seems to be working for now.

By the time early dog-walkers begin to stir, I’m also ready for a walk. My physiotherapist says that’s the best kind of exercise for the Parkinson’s as it helps maintain balance (and confidence in balance). Does nothing for my growing pouch, but there we are. I often take my MP3 player because music with a strong beat helps me walk faster and more ‘normally’, i.e. swinging the arms and striking down with the heels, rather than shuffling along with hands in pockets to hide the stiffness. (I particularly recommend Leonard Cohen's Sisters of Mercy.) I think this effect of the beat is quite common for PD and similar to the effect of patterned floors – it is as if the clear rhythm releases some blockage in the motor system.

Mostly I walk alone, but at weekends and sometimes if I walk in the afternoon or evening, Marie comes too. She follows from the front, marching out with almost military pace and rhythm, while I limp and hobble along behind – like some chubby, middle-aged Igor. Almost invariably, she makes me go further, or faster, or more uphill, or over rougher terrain than I would have if alone. She claims this is good for me – well, she would. In some desperation, I brought my small camera along one day to give me an excuse to stop and catch my breath while pretending to admire this or that manifestation of Nature (of which Marie approves). It turned out to be rather interesting, though, and I am now building quite a collection of close-ups of bark and gnarled roots and contrasting leaves. In fact, I have punished Marie for her annoying enthusiasm by spending too much money on a new and better camera, and making her carry around a large sheet of coloured cardboard on walks in the woods so that I always have a monochrome background to hand. Serves her right, and distracts the attention of other walkers from any oddness in my gait.

I’ve even started to enjoy the walking for its own sake. It helps me reclaim body and mind when either is at risk of seizing up, and if nothing else, it makes me happy when its over. The trick to mimicking normal movement seems to be to pretend to myself that all is well and normal, but to keep my eyes firmly focused on the ground directly in front of me – because I fear that if I lose sight of where the feet go, I might fall To give the system some credit, I have never fallen yet (though there is always a first time…).