Scanning for signs of life

JON: One of the advantages of finally getting my CPR number a few months ago is that it magically opens doors and lets me go places – not, sadly, places like fancy restaurants or exotic holiday locations, but places like hospitals and consulting rooms where the national experts on PD are said to reside.

This is why we spent all day Friday in pursuit of pictures of the inside of my head.

5:30 am: M wakes up, waddles in to pour a half dozen pills into J
6:00 am: M, now dressed and coffeed, wakes J
6:15 am: M wakes J again, forces J out of bed and into clothes
6:45-7:00 am: J brushes teeth v-e-r-y slowly
7:00 am: M & J hit the road

At that time of day, I am quite a ways from functional, so the best contribution I could make to the drive was to snooze quietly while the radio kept M awake. It’s an hour and a half drive to the hospital (not the nearest, but purportedly the best). Not even I can snooze that long straight on top of a bad night’s sleep, so I also got to do a bit of generalized suffering with my collection of aches and pains. I’ve been told that you get used to the pain after the first 25 years.

The reason my brain scan took a whole day is that I first had to get an injection of some kind of radioactive goo, wait three hours for this to make its way to the furthest reaches of my brain, and then come back for the scan itself.

The goo was delivered by a very large needle, and when I say large I mean HUGE (not that I’m a wimp, you understand). The nurse asked me where I wanted the shot, and I said “in my wife”. We settled on my upper arm, though.

The long wait while goo percolated through me was spent shopping for lamps (no luck) and for goodies at an Asian market. We’re quite ethnically challenged out in our lovely boondocks, but I’ve now stocked up on enough English tea and Indian curry mixes to last me through the next ice age.

Then back to the hospital for the actual imaging, a DatSCAN. All I had to do was keep my head still for half an hour while machines whirred and clicked around me. Last time I had a brain scan, shortly before my diagnosis some five years ago, I had a minor panic attack due to the unbearable pain in my back. Marie was worried this might happen again, but I am happy to report that a) my back no longer hurts anywhere near that badly and b) I’m now so used to being prodded and poked that I was perfectly relaxed throughout.

Now all we have to do is wait five weeks to get the result at my next appointment. I predict they’ll diagnose Parkinson’s disease.

BTW, I just got sent a form from the Dutch pension authorities asking me to confirm that I’m alive. Marie is fairly certain that I am, and she is often right about these things. As further proof, I may return the form with a photo of me wearing a silly hat and holding today’s newspaper.

Settling in

JON: We are now at the stage in our move where a daily rhythm seems to be emerging in our lives: we have soup for dinner with great regularity, sirloin steak at painfully long intervals, and pudding on Fridays, Saturdays and Sundays. And on Tuesdays we are spontaneous …

For a treat we went to the cinema to see Love and other drugs. It’s a romantic comedy with the USP (unique selling point) that the girl has Parkinson’s, and the guy falls in love with her and promises to stay and look after her for ever. Of course all we get to see from her is a few hand tremors and one OFF tantrum, but there’s also a room full of real Parkies meeting to share their experiences and shake and twitch for the camera. One of the spouses pulls no punches when he describes the advanced stages of PD to our hero. The spouse comes back later to apologize and say it’s not really as bad as he painted it – but you know and I know that it is bad, the OFF days are miserable, and even the ON days are not that great for me any more.

But none of this should come as a surprise. I am currently enjoying the literary dystopia that is Thomas Hobbes’ 1651 book The Life of Man which contains the famous passage that this life is ‘Solitary, Poore, Nasty, Brutish and Short’. The spelling might be slightly odd, but the sentiment is spot on. Admittedly, some things have improved since 1651. We now have indoor plumbing, antibiotics and content-free telly 24/7. A whole cornucopia of diseases can be treated and there are even some drugs and surgical treatments that impact on Parkinson’s. However, as you know I also had a dose of sciatica: no treatment available, just do the exercises (which don’t cure you but at least gives you something to do while you wait for things to heal).

And although L-dopa can have an almost magical effect on PD, my dose has to be increased more often than I like as the disease progresses and the drug’s efficiency decreases. At the moment, I’m still at the good days / bad days stage of my PD. Believe it or not, it has taken me five days to get the get-up-and-go to write this post, because when I’m OFF my get-up-and-go goes. At least today is a good day.

Another highlight of the week was the rental of a skip to remove assorted rubbish and all the boxes we used in the move. Normally the removers take their boxes back, but not in our case because the boxes are in the wrong country (i.e. Dutch boxes in Denmark). And since we had 3.5 tons of stuff to move, you can imagine the number of boxes. Being an idiot, I had to go and make a start on moving the rubbish into the skip which did my back no favours. Our next door neighbour once more acted as an angel of mercy, and to my amazement she and Marie filled the skip in no time. Not only that, it was done tidily with painted wood on one side and chip board on the other (this obsessive neatness may drive me to drink – I already take a lot of drugs).

There were some large sheets of wood which I was tempted to keep, partly as an excuse to get a circular saw to turn rubbish into firewood. But would my body hold up? How many fingers would I have left at the end of the first day? And would Marie use it to perform a secondary circumcision on me if I don’t behave? Discretion is the better part of valour, so I decided to let the wood go.

Meanwhile, my physio appointments continue. I spent a session trying out all the instruments of torture that they call exercise machines. I coped (rather well I thought) with most of them, though they did have one torso-twisting device that instantly recreated the pains I have when things are at their worst. There is more of this to come when I am soon to join a weekly exercise class for Parkies. It will be good to meet fellow sufferers and compare myself to them, but the exercises …

Home alone, again...

JON: It’s a long time since we’ve written anything for the blog. We have several good excuses, of course, but simply blaming it on moving into our new house and the associated traumas and tribulations pretty much sums it up.

We exchanged keys on November 1st, and Marie moved into high gear painting every available surface and directing a large team of burly workmen in the construction of a new bathroom and assorted other heave jobs. This was supposed to be a three month project but turned into a five-week one as buyers for our old house suddenly materialized. High gear was clearly called for.

Meanwhile, I went back to Holland. This was always the plan (cat-sitting, you know), but Marie and I were both rather horrified to discover how little energy and ability I now have in the DIY department. Basically, I can keep going like a semi-normal person for a day, but will then suffer grave consequences of exhaustion, cramps and back pain for the best part of a week afterwards. Which is perhaps okay under normal circumstances, but a house move is far from normal – and so, now, am I.

I may have called several previous posts “home alone”, but this time I was on my own for longer, further and much more miserable. It didn’t help at all that I developed sciatica pains and had put my back out because we were camping out on substandard beds in Denmark. At times I could hardly walk, and at one point I had a wee panic attack when I found myself standing completely immobile in a corner. All shall pass eventually, but it’s bloody unpleasant while it lasts.

My lonely vigil in Holland also came to an end at last, and (despite a small hiccup when the removal van carrying all our earthly possessions was stuck on the wrong side of a snow storm and unable to deliver for several days) I am now finally installed in this marvelous, PD-friendly home.

I’m tempted to upload a set of pictures of the house, but that would only make you jealous… I’ll just say that we have an uninterrupted view of the sea, and ample space to accommodate visits from my two children, their partners and offspring. The cat is a bit daunted by the new place, though – small animal, very wide, white world.

Next week I’ll tell you what fun we’ve had trying to get me the elusive CPR number which is the key to open all Danish healthcare locks. Don’t go away…

Officially 100% useless

JON: Well, now it’s official. I said last week that all that remained of my assessment for disability pension was for some untranslatable expert to ring me to discuss my future. As it happened, I was in the shower when he rang, so instead he spoke to Marie. In fact, he had decided that he didn’t need to speak to me at all as I was such an evidently hopeless case, and that he was closing my case with a recommendation for full disability benefits without any future labour market reintegration efforts. All that now remains is for a third department to calculate the exact amount they will pay me, and then I have a mass of bureaucracy to wade through with a couple of insurance companies who should top up my benefits on the basis of this assessment.

But the decision is made, so essentially that’s it. Marie and I both feel kind of ambivalent about it. It’s a great relief that the long wait is over, and that no public servant miser is going to demand that I supplement a smaller pension by working as a part-time car park attendant or break-dance instructor. On the other hand, it is a mixed blessing to know the experts agree that there is not a single thing I can do that anyone could possibly want to pay for.

My psychologist reckons I shouldn’t feel like a reject but be satisfied that it’s much easier for the experts to award benefits to someone with a recognized disease such as Parkinson’s (expert diagnosis and crystal-clear prognosis) than to more common and more amorphous complaints such as stress or back pain.

Anyway, fuelled by Ritalin and in the spirit of working to discover what I shall enjoy doing for the rest of my life, I have taken up art with a decidedly lower-case a. A very early result is this composition of teabag splats. It may need more work…

And my buy of the week is an electric back massager (from OBH-Nordica) which is wonderful, viciously painful and very effective. It was also fairly expensive, but after a free grab pole and tricycle from the local authority, I reckoned I could afford it – and I’ve always thought I was worth it.

The massager works by slowly moving a set of large steel balls up and down (or round and round) the spine while another set massage the neck. It’s a good imitation of the sort of movement a masseuse would make, but not as gentle and with the added advantage that her fingers don’t get fatigued.

I’ve discovered that one can overdo it, though, so at the moment my back feels battered and bruised, but even that is better than the chronic pain I had before. On the whole I’m pretty pleased with my purchase and recommend it to anyone with back pain and a busy wife.

Review

So how have I been doing lately, I hear you ask – don’t I?

Well, I still have problems getting off to sleep, and getting up in the mornings, so I’m not really myself until around 11:00 am. Or that’s my story. Marie’s is that if there is something I want to do or have to do, I’m up and functional within three quarters of an hour of taking my morning pills. I guess the discussion really is about what ‘functional’ means, but let’s leave that thorny little issue for another day.

My back ache is still there in the background (ha ha) which also affects my quality of sleep. I take a pain killer and have a lie down in the afternoon which helps some. I’m trying to get to a stage where I can stay awake and involved past 9:00 pm – it’s just so anti-social, but come 9 pm all I want is to climb into bed (I was going to say curl up in bed, but PD doesn’t allow curling).

There’s possible movement on the symptom front: Am I becoming more impulsive? Or merely more repulsive?

Well, we took the trip to Egypt at very short notice and I bought a new and rather expensive camera in duty-free, but the holiday had been talked about for months, and I’d been reading reviews of the camera for a long time, only waiting until I could see it in the flesh – which I did and promptly fell in love. And I have no regrets it a wonderful toy, and if I’m honest it’s also a bit of male jewelry, as in my lens is bigger than your lens.

About getting more repulsive...well, I used to the new camera to take macro pictures of my ear, which clearly show the parkinsonian ear wax (cerumen) that I produce by the kilo. Yeeech... I can’t say it has much of an impact on my quality of life, though sometimes I can hear the stuff rolling about inside my ear which is pretty horrid, and now I kind of wish I hadn’t taken the photos but could live on in happy ignorance of its appearance. It’s really very different from my pre-parkinsoniann ear wax. How do I know? Because I devoted several pages of my thesis to the fracture mechanics of (my) ear wax. Trust me, I’m a doctor.

Further on repulsiveness: I computed my BMI at 29.8 – just a few peanuts shy of obesity. My trousers are getting tighter, in a high-pitched-voice sort of way, or it could be a hernia developing. Anyway, Marie has decided it’s time for both of us to Make an Effort so the past week has been characterized by too much vegetarian food and too little pudding. I hate it when she’s right.

Lastly, the work–life balance. My book writing progresses slowly, and I’ve taken on the task of assisting in supervising an American PhD student who will visit our lab to do some work with the large intestine simulator (it’s a long story, and if you thought the ear wax was gross, well, this involves buckets of fermented poo). It’s an international collaboration: the student comes from the USA, the food samples are being prepared in Hong Kong, and we will use thin Dutch people’s poo and fat English people’s poo. Fascinating stuff, and it’s good to be involved. I’m also reading more, though nowhere near as much as I used to – the tiredness gets in the way, and even more so the back that makes it uncomfortable to sit in the same position for long, as one does when engrossed in a good book. Ho hum, you gets what you’re given.

Final interesting tidbit is news from my sister, who has persuaded BBC radio to do a 30 minute biographical programme about my father who was one the pioneers of computing at Manchester university in the 1950s. Cool, eh? So if there is any one out there with anecdotes or the like, get in touch.

A good moan

Hello, it’s Marie again. We promised in one of the early blogs to give a bit of background to what came before the blog started. Since this has been a praticularly horrid week, we thought I should take the opportunity to give you a whistle-stop tour of our private Hades, taking it up to date with the latest set-back.

When Jon first got ill, neither one of us had any idea whatsoever what we were going to be faced with. I suppose that’s obvious, really. But we thought, you know, we can deal with this – one step at a time, us together against whatever comes at us, there’s nothing we cannot cope with. We had no idea. It has been so much worse than we imagined, every single bloody step of the way dogged not just by the “normal” disease but by special difficulties.

First there was the 18 months spent trying to get a diagnosis – Jon medicated increasingly aggressively for back pain when in fact the problem was Parkinson’s. Only no-one could see that, because the PD symptoms were believed to be side effects of the pain medication. Which wasn’t even working. Jon was taking higher and higher doses of morphine, and getting more and more difficult to reach with reason and affection. The pills were his only hope of relief and thus his only friends, while I who tried to limit his morphine intake became the enemy, to be at times physically fought off. I knew he was taking a lot of drugs, but I didn’t know how much morphine is too much, so was shocked to be told that towards the end, he was taking as much as is normally given to patients with terminal cancer. My sister, who is a nurse, was horrified to see Jon – still in agony, but now also high as a kite. A deeply unpleasant week of fast weaning off the drugs followed (the less said the better). That was the worst of it, but the period before Jon received the diagnosis of Parkinson’s also featured a failed back pain treatment involving a spinal injection of steroids which managed to make Jon even worse, and a thoughtless colleague of our then neurologist who was happy to inform Jon over the phone one Friday afternoon that his MRI scans showed clear signs of a stroke (particularly unwelcome news as it was multiple strokes that killed Jon’s mother).

When at last Jon got the diagnosis of PD, it felt like a relief, almost like good news compared to what we had feared. Hurra, a diagnosis, a treatment plan, a new set of drugs, clarity and a way forward. At first the PD drugs (and new pain meds) worked well, and the many books we read about the disease led us to believe that Jon would have years and years of excellent quality of life with the help of these lovely pills.

This state of calm did not last, though. Along came another, wholly unexpected, set of adversities when Jon’s employers refused point blank to accept that he was now well enough to work as normal again – despite the fact that there he was in office and lab every day, beavering away exactly as before. At first we thought this was merely some kind of bureacratic mix-up, but it soon became clear that Jon was trapped in a special Kafkaesque hell. First the employers wanted their own doctor’s opinion, which was that Jon was fine. But for some reason that wasn’t good enough for the personnel department, and the doctor had to meet with Jon and his immediate superior to discuss the situation. Again the conclusion was that Jon was fine, and again the employers refused to accept this. Jon was informed that the doctor’s opinion would be of no use unless the doctor had a copy of Jon’s job description – and since no such description had been produced before, the employers drew up a document that contained such obviously unattainable targets that it seemed designed specifically to further a firing squad. Trapped between a rock and a hard place – accept the job description and get fired for failing targets, or reject the job description and get fired for long-term illness – Jon was very much not a happy bunny during this time. In the end, with the help of legal advice, a medical arbitration service and a wife keen to fight a winnable battle, Jon was received back at work after seven months of stressful misery. But let’s be honest: not only did he so not need to have it constantly rubbed in that he was considered damaged goods, the very fact of the fight also soured his former love of his work – and the long drawn-out battle just simply exhausted his mental reserves.

We could both have done with a bit of a break after all that, but no. While the work problems were going on, Jon started sleeping less and less well, with predictably tired days to follow. And after a pretty long period of attempting to ignore the elephant in the corner, we admitted to each other that we were seriously concerned about his cognitive abilities – in a word, the big D of dementia. Jon’s dad had Alzheimer’s, and PD patients have a vastly increased risk of Alzheimer’s. Jon’s physical and mental deterioration also seemed to be much too fast to fit with our reading on Parkinson’s, so we started to worry that he might have one of the so-called PD+ conditions (which includes special kinds of dementia and the delightfully-named multiple system atrophy). So now he’s off work again. The neurologist makes encouraging noises to the effect that all Jon’s current problems could be the effect of yet another adverse drug reaction. However, it takes 6-8 weeks to change drug regimes (slowly decreasing one type of drug and increasing another) – and I don’t know about Jon, but I frankly don’t see as much progress as I had hoped for.

There has been quite a lot said in earlier posts about Jon’s sleep disorder. Yes, (some of) the individual stories about what he gets up to at night can be quite amusing, but in the long run it is so immensely draining – mostly for Jon, of course, but also for me – never to have a normal, unbroken night, and never to know what chaos you will have to clear up in the morning. I suppose in some ways it’s quite like having a baby, and people our age don’t generally have the energy for babies. We had both invested a lot of hope in this sleep registration Jon was going for a few days ago, where he was to be extensively wired up with a range of sensors that could measure in detail his every breath and jerk and brain wave throughout one night in hospital. All went well until Jon actually feel asleep – whereupon he acted out yet another dream and ripped off half his sensors. Night nurses aren’t trained to re-attach these sensors, so he got sent home with just 10 minutes of sleep recorded. It may seem a small thing, but it is yet another set-back, yet another disappointment, yet another delay in finding the true cause and (hopefully) remedy.

And lastly, as I said a few weeks ago, we are ceasing to be a team. There is less a feeling of us against them – or rather, against it – and more of a feeling of him against me and me against him. He resents being ill, resents what the illness does to him, and resents being dependent and needing my help – and so in one easy step he transfers his resentment to me. Likewise, I am angry about what PD is doing to my husband, my marriage and our plans for the future, and I guess I transfer some of that anger on to him. The conflict that has really brought us – or is it just me? – down is that, presumably as part of his campaign of denial, Jon refuses point blank to take any of the advice given by the various experts and therapists who treat him. If I push and plead, he only gets more adamant. If I don’t push or plead, well, I guess then he’s fairly content. But I find it immensely difficult to keep my peace since I can see so much sense in the advice Jon has been given, and I can see how not taking that advice is damaging both his and my quality of life. But so is pushing and pleading, so in some desperation I am now trying my hardest to disengage and concentrate instead on all the practical tasks. Feeling relegated to the role of nurse-maid, providing about as much affection as can be expected of the average nurse or maid.

This week I have ordered a book about how to survive life as a caregiver and have made an appointment for the pair of us with a psychologist recommended by a good friend. Fortunately, rather than the long wait I was expeting, the psychologist can see us in just two weeks’ time. Good. We need all the help we can get.

I slept!

You might remember that I saw my neurologist a few weeks ago and begged her to do something about my insomnia, sleepwalking and night-time hallucinations. She diagnosed a probable REM sleep disorder. “Great”, thought the wife and I. “diagnosis precedes treatment which precedes cure (or at least improvement)”. The neurologist would consult the resident expert on REM sleep and post a prescription to me forthwith.

Well, forthwith wasn’t as quick as I expected, and time passes slowly when your head feels like a medical emergency. A week and a bit went by, then Marie rang the hospital and left a message of some desperation. Another couple of days passed, before I took things into my own hands and went to see my GP, armed with the neurologist’s tentative diagnosis. The GP happily dispensed drug A (he’s quite keen on drugs for a Dutch doctor). It was wonderful! I slept that night for the first time in months, just slept and slept and slept, almost 12 hours straight. It was absolutely glorious! Marie tells me she kept creeping into the bedroom just to enjoy the sound of my snoring.

And wouldn’t you know: the following day, as if by magic, a prescription arrives from the neurologist for drug B, a rather less powerful version of the same class of drug the GP gave me (without the benefit of expert advice). I don’t sleep like a teenager with drug B, and I feel alert enough to drive … but ooh, do I miss drug A and its lovely sledgehammer effect!

The other development of the week is that I have stopped seeing the nice physiotherapist round the corner who did the best he could for me but who I think was beginning to feel that his bag of tricks was getting rather empty. Instead, I will now go to the neighbouring town twice a week to see a specialist in movement disorders (Mensendieck therapy, if that means anything to you).

It’s early days yet, but I am feeling hopeful about this. Ms Mensendieck seems quite unfazed by my many complaints and inabilities, and she focuses on treating the causes of my problems with exercises that I can also do at home, rather than focusing (as did my previous physiotherapist) on treating the symptoms with massages and other muscle stimulation. I guess Marie will just have to take over the massages, and she is already used to giving me frequent short buzzes with the domestic sander (yes, sander) that physio #1 suggested might give some immediate relief from my back pain.

The nice Ms Mensendieck has already given me a present, a rather peculiar CD with advice on how to carry out daily activities despite having Parkinson’s. There is the slight issue with this CD that (a) it is in Dutch which I don’t speak and (b) it has been organized by a stamp collector into minute and repetitive sections, but nevertheless (c) it appears to contain valuable advice that Marie can help me decipher (not being English, she has no phobia about foreign languages).

Now I am just hoping – so very hard – that the next few weeks will prove that all my fears about aggressive forms of Parkinson’s are quite mistaken, and that many good nights’ sleep (and a lot of well-placed naps) will set me right 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.

Introduction

My name is Jon and I’ve got Parkinson’s Disease. These (cue music) are the journeys of the Spaceship Jon with the mission to boldly go etc. Parkinson’s is many things, and they say that when you’ve seen one case of Parkinson’s, you’ve seen one case of Parkinson’s. Well, this is my case, for what it’s worth, and this blog is aimed at you who have PD, and your partner, and anyone else with the time to read. I’m calling this PD unplugged because I aim to tell the truth – uncut, unadorned, unplugged – without all that pluckiness and good cheer in the face of adversity that you often get when people write about their chronic diseases.

Who am I? Well, I’m 55, I used to have a good job in England, two kids, one wife and one degree, but that was then. Now in my second life I have a second wife, three degrees and work as a food scientist in Holland (I happen to be THE world expert on custard) … it’s a long story, and I might tell it some day. My co-author on this blog is Marie who I have been known to refer to as "my current wife" and who both edits and adds to my draft posts, and who is likely occasionally to bypass me and write posts from scratch.

I started to get back pain mid 2006. No-one could tell why, the pain kept getting worse, and with each visit to my GP the stakes got raised until I was taking absurd doses of morphine, anti-depressants and sleeping pills to no effect. Or should I say, to the effect that I was seriously and permanently smashed. In January 2007 I went to a conference in Canada and by then I couldn’t sit for more than a few minutes at a time – standing up most of the way across the Atlantic and through the sessions I went to was fun fun fun, and I didn’t take in much of what was going on around me anyway. An epidural injection on my return managed to make things worse, much much worse. If my back was smouldering before the epidural, then after it was a forest fire. Within days, I had to go for a job interview in UK – a disaster as apart from having to stand up throughout, the morphine was giving me major thirst so I drank water constantly and had to have toilet breaks every five minutes, plus probably talked complete gibberish. One day it will become a funny tale, but not yet. (Fortunuately, as it turned out, the job would have been totally wrong for me anyway.)

While all this back stuff was going on, I was getting quite shaky, especially in my right hand (I’m right-handed – yes, god hates me). Also I was getting stiffer, particularly in my back. The trouble was that the back pain was so bad it was obscuring everything else, and nobody seemed able to come up with a diagnosis that covered all my complaints, probably because it was difficult to work out what was the original, underlying problem.

But at last, after a year of X-rays and MRI scans and EMG, countless visits to my GP and physiotherapist and the pain clinic and two neurologists, after four months off sick from work driving both me and Marie mad with anxiety and irritation, finally:
DIAGNOSIS
followed quickly by the right pills to control the back pain (epilepsy drugs, if that makes any sense) and Symmetrel to start treating the PD.

For me the diagnosis came as a relief – it seemed so much better than the things I had by then convinced myself that I had, like multiple sclerosis or a brain tumor. It took some time to realize that the diagnosis was not actually all that much of a good thing. On the scale of afflictions, a sprained ankle would have been nice, but no: it has to be an incurable progressive bloody disease. It seems I need to prepare for a slow descent. I have some symptoms now, and PD being a progressive disease these will get worse – and every now and then I’ll get a new symptom for my collection. Ho bloody ho.

So, I was 54 when diagnosed. Most people are over 60 when they get the diagnosis, but usually you only call it early-onset if you are diagnosed before you are 40. So I’m stuck in the middle, with bloody-inconvenient-onset PD.

Anyway, the neurologist who diagnosed me suggested I should take another month or so of sick leave to adjust to the medicaion and the idea of PD, which I did. And then I went back to work. Most people were kind, if often uncomprehending, some were helpful – and the personnel department launched what felt like an all-out attack to get rid of me. But that too is a long story, which I will tell you later when I'm feeling up to it.

As for right now, almost a year after diagnosis? Well, nose over knees – remembering to walk with big steps – cleared to drive for at least another two years – gaining weight at a rate of knots – back at work but left to my own devices – casting about for something sensible to do long-term, and blogging could be one answer.