Work is never done

MARIE: I wonder if well people know just how much time it takes to look after an illness? I suspect many think that people like Jon, and by extension people like me, potter round aimlessly for hours on end, get exited by the arrival of the postman, and generally live in a perpetual state of benign boredom.

That’s about as close to the truth as creationism. Our alarm clock rings at 6:30 every morning for the first pills and the start of the day. Two days a week Jon goes to the Oak House all day, two days a week to physio – at noon, because that’s when he benefits most, but it does rather bugger up the day. The last weekday often goes on other appointments, like the GP (who must be quite tired of us by now) or neurologist or Parkinson’s nurse or foot lady or social worker or (soon) psychologist. And there’s the installation of the duodopa pump soon, with two days in hospital for the last tests later this month and a further two weeks later in the year.

I have to drive Jon everywhere, and everywhere is quite far away since we live in the middle of (beautiful, cheap) nothing. What with the language barrier and my innate curiosity, I usually hang around during appointments, rather than go off like a sensible person to do the shopping or whatever.

So the only concentrated time I have for “office stuff” is the two days Jon is at the Oak House. I have a to-do list as long as back in the good old days when I got paid for this sort of thing. My list this week included these little jobs, none of which would have been necessary were it not for Parkinson’s:

• call the hospital to follow up on Jon’s test appointment – it took most of an hour to get through, but I then had a very useful half hour chat with the Parkinson’s nurse
• chase up Jon’s escort service as we have heard nothing about concrete arrangements since he was approved for the service – that’s required several calls already, and I still haven’t managed to get through to the right person
• investigate rumours that a special Parkinson’s class is being planned by another local physio – after four abortive attempts I finally reached the right person, who confirmed the plans, but says nothing is certain yet, so she’ll call me when she knows more
• spend several hours visiting two nursing homes that are potential places to live and/or go for respite care, because we are new in the area and don’t know what the various places are like, and because it’s been recommended that we (or perhaps rather: I) scout them out well before we need them, so as to avoid much (di)stress later
• do a web search to jog my memory as to the name of my psychologist, and then call to make an appointment for Jon, who wants to see if she can help him with the stress reactions that regularly bugger up his speech in shops and on the phone
• most laborious of all: make a list of everything we own in the world (and that’s well fragmented, with our history of moving around and leaving bank accounts and small saving pots all over the place) and decide what belongs to who, in preparation for making a will that is both livable for me and fair to Jon’s children – that’ll take the best part of a day

So no, we don’t get to twiddle our thumbs much. I keep thinking that if we can just get this one big thing, and perhaps those three or four minor things, out of the way, then we can relax and start working on those thumb muscles. It just never happens, there’s always something new to deal with. Just like there is for everyone else. And I suppose we wouldn’t really have it any other way.

Help and support

JON: The story so far … Jon, intrepid explorer of the properties of custard and kindred products, has launched an offensive to take back his brain, bowels and other body parts. Hence, the first thing I did on getting home after the neuro-psych testing a few weeks ago was to put together my oscilloscope whilst muttering darkly that “this is going to show them … dementia, HA! (mad cackle)”. So that’s the brain reclaimed, now for the other two.

If I remember rightly (and that’s somewhat unlikely given the current state of my neurons), I described the neuro-psychological testing and new drug in my last blog. A few days ago, we went back for another visit. Whereas last time was about diagnosing my problems, this time was more about identifying my strengths and finding coping strategies. First of all, it was established that I had taken the new diagnosis fairly well considering that I’d essentially been told my brain is turning to mush from both Parkinson’s and dementia. I have not become depressed or brooding, and nor am I in denial (I tried, but Marie wouldn’t let me). Apparently, that means I am well placed to tackle my cognitive deficits.

The neuro-psychologist suggested that I need to take many, short breaks so I don’t wear out my poor old brain and that I should try to become more organized in my surroundings. Marie and I have always disagreed, and frequently fought, about the point at which a room goes from being “homely” to being “a vile mess”, and it seems Parkinson’s is now on her side. In the interest of order, I threw away my collection of old copies of the New Scientist. It was nice to have them, but when would I read them? Probably never, I can hardly keep up with the new issues – although I have just remembered an issue which had a piece on Parkinson’s …

Further, I should consciously decide what things are worth remembering and what not – like not bothering to remember appointments and birthdays because I can just look at our wall calendar, not remembering about shopping or dinner because Marie can do that, but deciding what to focus on remembering from my Danish language school. Lastly, the neuro-psychologist suggested that I would benefit from attention training, though I have no idea where that would come from as cognitive rehabilitation is apparently not on offer.

That’s all well and good, but is it enough? I doubt it … but listen, what is that sound coming over the hill? Hurrah, it’s the cavalry coming to the rescue in the form of a very fine drug named Exelon. Exelon by name, excellent by nature, I say. I started using the patches three weeks ago. At first I felt a bit better, but being ever the pessimist I waited for the debilitating side effects to make themselves known. However, I have had no ill effects, and, as the Beatles sang, it’s getting better all the time. Next week Marie will ring the hospital to report this happy news and get a prescription for truckloads of this wonderful stuff.

In other news: as Marie mentioned in her last blog, she asked the local authority to send someone round to see if I’m feeble enough to be offered regular help. We were expecting to have to fight for support, either practical or financial. Well, it just didn’t happen. They treated our case as urgent, sent someone round within the week, did a thorough evaluation of my daily need for assistance, and made a decision on this within days. It’s something of a shock to me, coming from the UK, to be given the help we need with such speed and ease. On the other hand, Marie and I both feel a bit off about it – I’m kind of embarrassed that an outsider should see me as someone in need of help every day, and Marie says she doesn’t like the idea of me being sick enough to be treated as an urgent case.

Anyway, the upshot is that I have been granted a budget of 12 hours per week to pay for my own personal carer to attend to my every whim, such as drying my back and putting on my socks and sorting out my drugs. So who have I decided to appoint to this vital role? Why, it’s … Marie. It makes no obvious difference to our life as this is what she’s been doing anyway, but it compensates a little for the loss of her income from a “proper” job (she hasn’t had one of those since June) and it might enable us to buy in a bit of help with the cleaning and the lawn mowing. The hourly rate is rather pitiful, but it’s an improvement on nothing at all.

Perhaps it's not so bad after all

JON: A number of readers took the trouble to comment on one of my recent postings. They both(!) wanted to know if my not hearing what Marie says isn’t simply a bloke thing, i.e. pretty annoying, but something you can live with. With PD, however, there is always the nagging fear that these cognitive lapses could be the precursors of something debilitating. I think I just proved that I can handle big words – but is that enough to demonstrate my cognitive health? It’s well established that short attention span and poor short-term memory can be symptoms of PD, but since they’re also established symptoms of being a bloke, I don’t suppose I can ever know for sure.

The great news of the week is that it really seems as if we have sold our old house! A contract has been signed, the cooling-off period is over, and all that now remains is for the buyers to secure a mortgage, which they claim to be confident of doing. They want the house rather sooner than we had planned on leaving it, but these days the buyer is definitely king so we’re shifting our plans to suit them. I expect much chaos and confusion will descend on us, but at least this cognitive challenge is temporary.

As it happens, the contract was signed the day before we went off to the World Parkinson’s conference in Glasgow. I’d been slightly apprehensive about going, because I didn’t really want to see people in late-stage Parkinson’s, and they were rather difficult to ignore at the WPC. But although some were in wheelchairs and others very stiff or dyskinetic, they seemed to be OK with it which was reassuring. After a while I was seeing the person and not the chair – and whilst these people represent my future, I no longer think it’s going to be too bad. I reckon I could get used to driving an electric chair – the ride-on lawn mover in the new house will be excellent practice.

Due to regulations which prevent drug companies from marketing directly to patients, we non-medic delegates were not allowed into some of the sessions which were restricted to medics, nor were we permitted in the area where medical gear was on display. Of course it was a simple matter to borrow a badge from a friendly medic and get in that way, which of course I did – but was disappointed to find the medics-only stuff stunningly dull (which may have been down to the complexity of the topic or, more likely, the poor presentation skills of the clinicians). The lectures directed at non-medics were much better.

Of course, I actually spent most of my time outside the lecture halls chatting to fellow Parkinsonians and having a fine time. What was great was that it was possible to feel completely normal. We could shake, rattle and roll and no-one batted an eye-lid – though on second thoughts, batting an eyelid is perhaps not the best metaphor…

Making the best of things

MARIE: I recently read a book (not in English) that purported to give advice and support for the chronically ill and those who care for them. I really tried to like this book despite its poor organization, but it fell down in the usual place: no, it does not give support to carers, it just instructs us on how to support those we care for. It shouldn’t come as much of a surprise to me, really, but it was still disappointing.

However, I did take one gem away from this book which made the hours spent reading it well worthwhile. It is the expression amor fati, which loosely translates as “love of fate” or “love your fate”. Wikipedia tells me this motto was coined by Nietsche who I suspect may have meant something like “just accept that life is cruel and ugly and that you can’t do a thing to change it”. But I have decided to understand it more as “embrace your circumstances rather than fighting them”.

It’s so easy to feel sorry for yourself and bitter at the restrictions PD brings to both the person with Parkinson’s and the carer, and I admit we both do that now and again – Jon perhaps more than me because not only is his glass always half empty, it also has a dead fly in it. Neither of us has ever asked “why me?” which seems to be a question that occupies people with some level of faith, but we have been upset that, not to put too fine a shine on it, shit happens and it happened to us (in the picture it happens very neatly indeed).

On the other hand, while the disease has unquestionably slammed shut a number of doors, it has also opened others that we had never even considered. For Jon, for instance, taking early retirement has made him a far more sociable person who stays in touch with old friends and colleagues on Facebook, visits his grandchildren with keen regularity and generally enjoys talking to people about things other than his work – a major change and improvement, I can tell you!

For myself, the disease has led me to start writing about PD – this blog, regular articles, and working on a few book manuscripts – which I greatly enjoy. And it seems there is a decent chance it will lead me away from my current job in an ailing industry (academic publishing) to new and more meaningful work on the carer project that I talked about a few posts back. At least, reactions have been positive all round from carers, health professionals and patient associations I have discussed my ideas with. Will I also be able to secure the funds to make the project possible? I don’t know, but I’m feeling really hopeful. Amor fati in action!

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.

Feeling fine

MARIE: A couple of days ago a long-distance friend called to say happy new year and all that. We don’t talk so often, so when we do there’s this whole agenda that needs dealing with. Since both our husbands are, shall we say, non-standard kind of guys, their mental and physical states always come high on this agenda. So I told her about Jon’s application for disability pension (decision expected any day now), the plans for him to try Ritalin (prescription expected any day now), etc., etc.

And then she asked me, ‘But how are you doing? Do you remember to look after you?’ It’s a good question, and one I cherish. It’s so easy to focus on Jon because he’s got the disease, he gets the treatments, he is the one whose condition keeps changing – there’s always something to tell, some new worry or hope or idea. This focus on the sick partner is boringly commonplace, leaving great hordes of caring partners somewhat forlornly on the sidelines – half-forgotten both by themselves and the world at large. (I hesitate to define myself as Jon’s carer because it smacks of more serious disability and more extensive service – but I also recognize that this is just obfuscating, because in fact I do already look after him in a number of ways that are not ‘normal’ between spouses.) Doctors and nurses ask about the carer because they’ve been trained to, though I’m not sure they necessarily know what to do with the response. So it’s really lovely when friends and family ask, and care about the answer.

And do you know, the strange thing is that I’m fine. Compared with one year ago (as one is supposed to do at new year), I am very significantly better. Last January Jon and I were just starting to see a psychologist because we were hard at work making each other as unhappy as possible. The main bone of contention was Jon’s inactivity – I was frustrated that he did so very little, while he felt that it was perfectly reasonable to take a year-long nap. The psychologist focused on my aspirations for Jon and made me accept that Parkinson’s has changed our lives forever and that no amount of pushing and prompting can bring back the old Jon, because he just isn’t there any more. Very painful, but also very necessary.

I feel that I am now, at last, at peace with the disease. It has caused an irreparable loss, and there will be more losses to come, but there is nothing whatsoever I can do about that. All I can do is try to live as well and as contentedly as possible within the constraints of the disease, and help Jon do the same. There’s nothing inherently terrible about that: all lives are constrained by circumstances – practical, financial, familial, and for us also medical. It’s the impotent rage that is painful, and I really do think I have put that behind me. Jon never raged, although he has quietly grieved – as, I suppose, we both continue to do to some extent. Another fact and facet of life.

The remarkable thing is that it seems my new-found ability to calmly face the realities of life with Parkinson’s has rubbed off on life in general. We are in the middle of all sorts of potentially mega-stressful processes which should be making life difficult but aren’t.

• Our house is up for sale in a pretty depressed market and could take ages to sell. But it’s a nice enough place to live in the meantime, and having done all we can (de-cluttered and made nice, carefully picked an estate agent, priced and presented the house to best advantage) there seems little point in obsessing further about the sale.


• Our finances are in flux with Jon’s benefit application outstanding. But it’s an inevitable process, there’s nothing we can do to affect its speed and little we can do to affect the result, and we’ve prepared as best we can for the various potential outcomes. Again, fretting about it will achieve nothing but a bad temper, so we don’t (although I do call the benefits people every couple of weeks to check on progress).


• My work future remains undecided since the employment contract I had been led to expect has failed to materialize. But this is due to external circumstances not under the control of my potential employer, relations remain extremely hearty all round, and we have negotiated the best possible continued freelance arrangement – and frankly, until we have sold the house and can move closer to my (un)employer, it makes no real difference whether I’m working freelance or as staff. No point worrying about it, we’ll just see what the future brings.

And the last, but by no means the least, ingredient in a contented life: Jon and I are back playing on the same team. We are being attentive, loving, and considerate to each other. We’re still human and have the occasional tiff and grump, but it is on a background of expecting the possible from each other and of trying to live up to that expectation. And we generally agree about what is important, realistic and desirable in life. It’s pretty damn good, actually.

So that is my new year’s wish for family, friends and readers: that, whatever the circumstances, challenges and prospects for 2010, you should be as fundamentally fine as we are.

The centre of attention

JON: So, I guess you will want a report of my day of pampering at the Parkinson Centre, right?

Well, after some chatting, the occupational therapist asked me to do two things: boil an egg and peel an apple. I started with the apple, which turned out to be very, very difficult for me. Half way through, she pointed out that I’d forgotten to start the egg. That's when it all got a bit confused. They had an electric hob and I’m a gas-man, so now I was trying to do several things at once – work out the cooker, watch the egg, find an egg cup, finish peeling the apple, and find a plate to serve the apple quarters. Marie seemed to feel that this was a productive exercise – defining my boundaries, etc. I found it depressing, not having realized how far I’ve sunk into the mire. It was a bit like having my nose rubbed in my disabilities.

The psychiatrist thinks that although I’m not depressed now (or yet), I should make a pre-emptive strike by considering some happy pills before I do get depressive, and also possibly engage with a psycho-coach to help in ‘the process of coming to terms’. I am open to the first idea, and not completely closed to the second.

The social worker was very helpful and directed us to the right place to sort out our pension / social security issues (Marie talks more about that below).

The dietician, rather predictably, told us to eat less and exercise more, and we agreed. We also chatted about the protein problem. The problem is this: L-dopa is a form of amino acid, so it competes for absorption with any other amino acid present in the gut. Proteins from food are broken down in the stomach into amino acids. Thus, eating lots of proteins can hinder the absorption of L-dopa. Normally the advice is just to avoid protein-rich foods around the time that you take your L-dopa medication, but it could also be that a general low-protein diet would make me feel better. It works for some, but not for all. We agreed to try it for 2 weeks (at a suitable time) to see if it makes a difference for me. I guess even placebo can be a good thing in the right circumstances, it’s just that being an ex-dentist I have a professional problem with gift-horses…

On the whole it was a very productive day. The downside is that it forced me into confronting my current problems and, worse, those that are yet to come. My policy of denial was working OK for me before, but now I have to think about these things. Plan A was to be shot at the age of 90 by a jealous husband, plan B now seems to involve electric wheelchairs, bed-baths (lots of lather, please nurse) and buckets of liquidized food. Ho hum.

MARIE: Is that a light at the end of the tunnel, or just an on-coming train? It seems we may, at long last, be able to make some progress on Jon’s status regarding work and pension, and thus begin to tame the many uncertainties that have been stressing us out - few things, in my fortunately limited experience, being worse than uncertainty and the sense of powerlessness it brings. Well, actually, everyone knows that there's nothing worse than a paper cut, but uncertainty comes second.

At the utterly marvelous and intensely exhausting day we had at the Parkinson Centre this week, Jon was seen and assessed and advised by many experts all of whom agreed that there was more they could do to help him but that it was highly unlikely this would render him a viable prospect on the job market, and that the focus should therefore be on helping him adjust to and cope with a life of leisure (which sounds a lot better than it is when it comes from being incurably ill at the age of 56).

It has been almost a year since Jon went on sick leave, which is cause for an evaluation of the prospects for his return to work and of the effect of efforts made towards ‘rehabilitating’ him back into the labour force. Which both appear to be essentially nil, in the eyes of his works doctor and supervisor. This in turn raises the question whether Jon should apply to be assessed for disability pension now, or remain in limbo for another year before the assessment is forced on him. I had a long and helpful chat with the government body that awards these pensions, and was told that it was exceedingly rare for them to overturn the opinion of a works doctor.

That means we now have a clear path: first see the works doctor (appointment in two weeks’ time) and get his opinion, then see supervisor and personnel department to confirm details of salary, pension and insurance (hopefully on the same day). Next, see Jon’s normal neurologist (next month) to get her opinion. Then, if (as we now firmly expect) everyone agrees that there is no hope of Jon retuning to work, apply for disability pension, wait up to 10 weeks for the response, and draw a sigh of relief at one less uncertainty to keep us awake at night.

JON: On re-reading the text below, I realize that only an obsessive-compulsive pharmacist could possibly be interested, so unless you are indeed an obsessive-compulsive pharmacist or possibly a PWP, skip the rest of this post. (People With Parkinson’s who can’t skip, can just crawl to the helpful button marked X.)

The neurologist who adjusted my medication last week was very careful to stress that when adjusting treatment (drug, dosage, timing, frequency, etc.) it is VERY important to change only one thing at a time – and then went on to suggest that I make two changes: switch from Sinemet to Madopar dispers (a rapid-uptake form of L-dopa) and start to take a daily Azilect (rasagiline, a MAO-B inhibitor) which supposedly prevents breakdown of dopamine in the brain and thus leaves me with a higher level which is a Good Thing.

So, as Dr Phil might say: ‘how’s that workin’ for ya?’ And the answer would have to be CRAP. Back in the good old days (i.e. last Thursday) on Sinemet, I took 3 doses a day at 5-hour intervals. It sort of worked, but not well. Basically, the pills took upwards of 2 hours to take effect, I then felt good for an hour or so, then downhill until the next dose. We did a straight swap to the same dosage and frequency of Madopar. It takes effect quicker (1 hour or less), but also seems to wear off quicker, and the good bit isn’t as good. I’ve been very strict and not allowed myself any ‘tweenies’ which I have to admit I did back in the old days. I’ll give it a little longer but am not feeling hopeful.

Time and its uses

JON:
Chronically sick people have a habit of saying that there are good days and bad days. Well, I’m having a bad month. I have upper and lower back pain, my knees are stiffening up, my mood is – well, you can see that from what I’ve written: my mood is subterranean. I just want a day off, one day free from aches and pains, one day when my brain works, when I can sit down comfortably and with ease. But it seems that is not going to happen, ever.
I suppose it comes as no surprise that pain is, well, it’s a pain. It’s nowhere near the severity it was prior to getting diagnosed, and my painkillers are fairly effective, but I do find myself living from pill to pill. I feel crap for an hour before pill time as the previous dose wears off, and for an hour after taking the pills while I wait for them to take effect. In between, I’m a bit spaced out – literally at the moment because I’m reading SPACE, a good thick novel about the space race.
And then there is the feeling of being pathetic. Last year Marie wrote a book, this year she has organized its publication, book launch, promotion etc. Also kept her business afloat, worked for her freelance clients, washed the floors, cooked, cleaned, etc. And what have I achieved this year? Bugger all, is what. A couple of blogs (though written mainly by Marie) and depressingly little else. How much of this is due to me being a lazy sod, and how much can I lay at the feet of the Parkinson’s gods (intentionally very small g). Well, depression and apathy are common PD symptoms, while being a lazy sod is down to my defective chromosome (laziness comes with the genitals). But I didn’t use to be lazy. OK, I never did much around the house, but I did do “stuff”, and I don’t like doing “nothing” instead.
I read a blog recently (PD and ME) where the blogger wrote: “I don’t want to play any more, it’s getting boring, someone hurry up and find a cure”. I couldn’t agree more.

MARIE:
If you want something done, ask a busy person, they say. I have become a busy person, and so am getting more and more done each day. Work is going well in the sense of being demanding of my time and attention (which is how I like it), more and more of the housework falls on me, and I also insist on continuing with the things I enjoy – my gardening in particular.
It’s as if Jon and I are on two opposite trajectories of time, his getting ever slower and mine ever faster. Which at times makes him feel feeble and pathetic, and makes me feel rushed and hard-done-by. I’m not sure that there is a solution to that, beyond just getting used to it. And making sure to take the time (on my part) and make the effort (on Jon’s part) to meet in the middle often and with affection.
What I find hard to bear is when he is down in the dumps, as he has been recently. I so want, in my practical, annoying, bustling-around-and-sorting-out way to do something to make it better. Make a hot drink, massage a shoulder, fetch a plaster. Sadly, Parkinson’s does not allow for quick and easy fixes, just one long process of acceptance – which, I suppose, is really quite like life itself.