Wrong, wrong, wrong

MARIE: The more Jon needs my help, the more he resents it. I can understand that in my head, I can see how bloody painful it must be to realize that there’s one thing after another that you used to do as a matter of course, from zipping your coat to answering your letters, that you now have to leave to others. Or rather, to one other.  You can’t really direct your anger at a disease, and since Jon never believed in fate or any deity, that won’t work as a lightning rod either. So what’s left but to let me have it?

Not in an openly aggressive way (at least not since he frightened us both by shaking his fist in my face some months ago), but by saying and showing that everything I do, everything I suggest, is just wrong, wrong, wrong. I’m careless, controlling, moody, patronizing, childish, self-indulgent. If I try to tell him how I feel about things, he simply walks away. It seems to me that he has no use for me at all, just enormous, indignant need.

 

I asked him about his anger. Was he angry about not being allowed to drive? Yes. About being unable to work? Yes. Unable to read a book? Yes. Having constant back pain? Yes. Having to lug around his duodopa pump? Yes. Whatever I asked about, he was angry about it. Then I asked who he was angry at. Was he angry at the paid helpers? No, not really. Angry at his children or his sister? Certainly not. Angry at my family? Not a bit of it. Angry at me? YES, emphatically so. Why? For doing everything wrong.

 

This is not Jon. The man I met, loved, married, may have been stubborn and dismissive at times, but never angry or aggressive. What is going on?

 

It’s not about Parkinson’s anymore. This blog has changed over the last year or so. I’ve tried to keep a focus on Parkinson’s, like we originally intended, but PD just isn’t our main problem now. Which is of course partly because Jon is now fairly well medicated with the duodopa pump, so he’s physically better. Only as soon as one issue is dealt with, the next one rears its hideous head.

 

Now the greatest challenge by far is Jon’s cognitive decline. Ever since his diagnosis with Parkinson’s dementia a few years ago, he has chosen to ignore the signs and carry on regardless. I was taken aback at first, but came to see what a helpful strategy that was for him. Only now he’s come up against the wall and can no longer kid himself that all is well. I think that’s why the anger is erupting now, when his decline forces him to acknowledge his condition.

 

Nobody should have to know about themselves that they are slowly losing their faculties; that is the cruelest thing of all. But understand it as I may try to do, I still get terribly hurt and feel horrendously frustrated. I can’t even act natural around Jon anymore. Everything I say to him has been weighed and considered: will he understand? Will he misunderstand? Is the timing right? Is the wording right? Could I, should I go about it some other way?

 

I’ve talked to those who ought to know, and they tell me I’m not doing anything wrong, that dementia just takes some people that way. The anger may continue or it may go away, but there’s not a lot anyone can do about it. Well, we got Jon on anti-depressants a few months ago, and I wonder if upping the dose might help a bit, but I daren’t hold out much hope.

 

Yesterday, I suggested that he needed a bit of pruning, as in a haircut, a beard trim and eyebrow services. He said he’d only have the beard trim, and only if I did exactly as he instructed. I hesitated, trying to figure out a non-confrontational way to persuade him of the haircut. He got fed up and decided to do the job himself. So now he has a big bald spot on one cheek and a mouth still hidden under the overhanging thatch.  Hair like a man going feral, of course, not to mention the unibrow and the guitarist’s nails.

 

Why do I care so much? Why can’t I just leave it be, do as he wants, trim his beard for him and let him grow his hair long? Sure, it would look somewhat eccentric, but so what? Does his appearance reflect on me? (Yes, I’m ashamed to say that I think it does a bit, though it shouldn’t.) Is it worth the upset? Of course it isn’t.

 

So why am I nevertheless upset? I think it’s the sheer volume of passive aggression. This morning we even had a fight about tooth brushing. It’s getting ridiculous. I’m feeling stretched, undermined, rejected, unappreciated, frustrated. Sometimes I even feel a little bit abused. Sorry if I’m not taking that as well as I might. I reckon I need a break.

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.

Big questions

Back from my trip to the UK to see my daughter, son, daughter-in-law, son-in-law, granddaughter and grandson – one of each and all bases covered. The family is a veritable melting pot of multicultural diversity: my first wife, mother of my children, is the only English person in the room. I’m half German and half German-Jewish, one in-law is Scandinavian (as is my wife) the other is second-generation Indian, partly via Kenya. This makes my grandchildren Indian/German/Hindu/Jewish/CofE/British – apparently a perfect and harmonious mix, but their DNA must be very tightly coiled.

The point of all this, though, is the depressing question of whether PD is genetic. PD that is not caused by an identifiable outside influence such as drugs or encephalitis is called idiopathic (from Greek idios=own and pathos=disease). That indicates a totally random eeny-meeny-MEAN kind of personal bad luck, but many doctors and sufferers believe that there is also an element of genetics involved (and of environmental influence too). I actually have an uncle with PD, which is worrying – because if there is any truth in the idea that PD is partly genetically determined, that means I may have passed on dud genes to my kids and grandkids. I don’t want to think about that (so I do).

I’m carrying on with my new pill regime for the second week, i.e. more Sifrol plus also one small anti-depressant each night to help me sleep. I need the help, but I’m also getting quite worrying side effects. Thus, before we left for the UK Marie had to prevent me going for walk in garden – naked at 3:00 am, after attempting to lift the garden door off its hinges. Another night I freaked out the cat when I went on a search for “air bears” in living room. I also have vivid dreams, for instance of buying a new house and having to piss in sink because there is no loo there – so vivid that I checked the sink next time I woke. It looked wet but not yellow, but I rinsed it anyway …

I’m told that these side effects will wear off after a week or three. And they better bloody had, because an unpleasant scenario is unfolding at work. Monday Boss asks me to write a simple bit of software. I confidently say OK, I will have it done for him by Thursday, because it really was a trivial bit of coding. But the snag is I am hung over from the new pills, so Friday rolls round and I have to admit to Boss and myself that I have failed to come up with the code. Together we decide to send me home sick until mind and body have improved. Boss understands the difference between health problems that are caused directly by the PD progressing, and health problems that are secondary or unrelated, and therefore potentially curable/reversible. My reaction to the new drugs is in the second category.

But for me, THE BIG QUESTION is: can I actually still write a simple program? I feel my head clearing somewhat, but the world seems to be seen through a dark glass. I used to do this work all the time, and I’m starting to panic that perhaps now I can’t (and the panic obviously isn’t making the task any easier). The books say that about 30% of PD sufferers develop some cognitive impairment, but how can you tell? What is PD and what is a normal process of getting older and slower and less able to learn new skills? A good friend of mine who was at least as good at programming as I stopped years ago because he just found it harder and harder to learn each new version of software. Is that what is happening to me, or is it something more sinister? If I look on the bleakly black side then
* I’m not reading as much or to the level I used to
* Driving has become a nerve-wracking task – though I’m safe because I’m scared
* Senior moments are getting more frequent and my short term memory is rubbish
* I could not sort out setting up this blog but needed help from #2, and before it has always been her who needed help from me with IT
* Finding the correct word is getting difficult – apparently a very common symptom of PD, but worrying nonetheless. It gives a sensation of time dilation where it seems like half a minute ticks by before the word comes to me, whereas others say it is really just a brief pause. Often I cope by walking away, and Marie pretends to ignore the pauses.

Have you seen Flowers for Algernon? A fine (SF) book and later film in which our hero starts out stupid, achieves a high level of intelligence helped by drugs, and then while fully aware of his plight looses it all, reverting to stupid. It always makes me cry.

Anyway, what this probably is, is a clear demonstration that a little learning is a dangerous thing. Between us, Marie and I have five degrees and every book on PD we could find on Amazon. I can tell you with some confidence that it is not a good idea to read all of them in one go, it will set off severe hypochondria in the most well-adjusted person – which I am not, so there’s my excuse.