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.

Taking stock

In the long term we are all dead. Another safe prediction is that tomorrow is very likely to be much the same as today, so in the short term we seem to be OK – it’s the medium term we need to watch out for. As progressive neurological diseases go, PD is less nasty than some: not fatal of itself, but not a recipe for a bright future either.

A gloomy start, perhaps, since in fact I’m feeling slightly upbeat today. The new pill regime is taking effect at last. I am almost 100% weaned from the Sifrol (dopamine agonist) and onto Sinemet (levodopa). My tremor has improved, I’m sleeping almost normally, I walk significantly better, my muscles are a lot less stiff, my posture is much improved, and as a surprising last effect my appetite is back to normal proportions. There’s still 10 kg to go before my weight is back to where it should be, but I am already down one trouser size.

I’ve even done some driving. I keep it slow and steady, but that’s really just paranoia. My reaction times seem normal (I’ve been using the pencil grasp test), and the only lingering issue is that I find the level of concentration needed for driving rather stressful so am best on short journeys. Which is enough to set me free to go, if not where-ever I wish, then many places I wish. And it sets Marie free to not go where-ever I wish which clearly makes her daily schedule rather easier.

(Speaking of Marie, I am happy to report that we are doing a lot better than we were a week ago when she posted her somewhat pained text. I don’t know what did it, but after an immense amount of talking – mostly on her part – we finally seemed to hear each other, and have been getting on very much better since.)

Am I back now to where I was before my diagnosis? I think not. For instance, I have a scientific paper to review, and I’m finding it hard work (even though it’s based on work I did a few years back, which is flattering).

So the big inquisitive elephant in the corner is asking: is it time to start thinking about a return to work?? My feeling is that full time would be overly ambitious. My concentration flags after a while, and I still feel I need a nap most afternoons. My short term memory is also a problem. Stuff I did 2-3 years ago is crystal clear, but I can read the same recent article over and over again without the information sticking. Will I ever learn new stuff, or am I doomed to repeating the same Sisyfean learning task over and over again?

In the medium term the only direction is down, so do I go back to work part-time for a bit before throwing in the towel, or do I (and my employer) accept the inevitable and give up now? If the latter, I should try to find some less demanding, less academic work to do. Software writing (99% repeated from prior work and 1% demandingly original)? Freelance journal editor (stay up-to-date with science without actually having to do any myself)? Write the great Anglo-Dutch novel? Blog obsessively?

Big boys' drugs

My appointments with my speech therapist appear soon to be coming to an end – because, to my surprise, the therapy has worked. I admit that when the therapist asked me during my first appointment with her what I expected to get out of the treatment, I told her that my expectations were very low and that I predicted she would have a problem getting me to do the exercises she prescribed. Her answer then was both startling and honest: she would have no problem at all, but I might have one. Out of the mouthes of babes and therapists, eh? Somewhat uncharacteristically, I took this to heart, and with a wife nagging in the background have in fact been reasonably good (though far from perfect) about doing my exercises.

The basic principle seems almost too simple to be taken seriously: first make patient aware that speech is to low and unclear, then get patient to correct the problem through practicepracticepractice … For me, that has meant various collections of long words and short sentences to be practiced regularly, and recently also the use of a sound-level meter (a relic of my former life) which gives my scientist’s soul the satisfaction of being able to see in clear numbers whether I am speaking at an easily audible level. I’m not saying that I am now a model of clarity at all times as I still regularly forget to speak loudly enough, but the difference is that I now know exactly what to do when asked to repeat myself – and that I am able to do it. When I started the therapy, I could barely get through a dozen loud words before my throat went rough and sore, whereas now I can easily do 50 or more. Progress indeed, and I take back much of what I arrogantly thought of speech therapy before.

As I have mentioned before, we have also been playing with my medicine dosages, particularly reducing my intake of Sifrol (a dopamine agonist) in the quest to regain my mental capacities. The result is – predictably – serious physical deterioration but at least with moderate success on the cognitive front. Apparently dopamine agonists regularly have these adverse effects involving hallucinations, sleep disturbance, mood alterations etc., so I am in large, if not particularly healthy, company.

As the dosage has been reduced, I have gotten twitchier and twitchier, stiffer and stiffer, more and more prone to freezing in place. This is no fun at all, let me assure you. It takes enormous effort to get a movement started, and once I’ve got going it is hard to stop so it is not long before I run out of space. The last week or so I have regularly become trapped in corners, inside T-shirts, and somehow ended up turtle-style on the floor when all I meant to do was pick up my shoes. Shoes in themselves are another area of frustration as I now find it almost impossible to get shoes and socks on, and equally difficult to force my feet into the leg holes of knickers and trousers. Do you know how demoralising it feels to have to sit there like some useless lump while your wife helps you into your underwear? Very bloody demoralising indeed, is the short answer.

This obviously cannot go on, the way it is wrecking the quality of life of both myself and #2. I had hoped to wait a little longer before going on levodopa both because it feels too soon for such a fairly drastic step, and because many (but not all) experts suggest it is better to wait as long as possible – the idea being that there is a finite “window” of treatment when levodopa works well, after which severe side effects normally set in. On the other hand, I could also get run over by a bus, attacked by killer bees, or develop the lung cancer I so richly deserve after being a two-pack-a-day man for decades. And then what would have been the point of postponing levodopa and suffering through more of this current misery? So this morning, the decision was taken to switch me to levodopa (Sinemet) right away. Marie and I are both pinning our hopes on this giving me real boost – watch this space!