Motivation, motivation, motivation

MARIE: Finding the right treatment for non-motor symptoms of Parkinson's Disease can be a challenge and can require much patience and perseverance.Regular readers may already have pieced together the story below, but we think it's such an important one that we'll take the opportunity to tell it in one, focused post, as it shows how a fairly common complaint can find an unusual solution.

When PD has just cost you the job that has been both your work and your hobby for decades, it is hardly surprising if you end up on the couch watching daytime TV and snoozing the day away, with little idea how to fill your undesirably early retirement. But shouldn’t you eventually get back off the couch?

I soon became concerned at Jon’s inactivity and terrified that this was becoming permanent. Jon, though, felt he was reacting to a difficult situation in a rational and ‘normal’ manner. This became a source of much conflict which landed us with a relationship therapist who focused on adjusting our expectations of each other, and in particular helped me to accept that the diagnosis had forever changed what I could expect of Jon. Which was really quite helpful, but still left Jon snoozing on the couch.

We brought up the issue again a few months later when Jon was seen by a psychiatrist during a multidisciplinary evaluation for PD. His daily activities and lack of initiative made her suspicious that he was depressed, but we didn’t think so as he wasn’t the least bit miserable. So Jon was referred for a clearer diagnosis to a clinic employing both a psychologist and a psychiatrist with extensive experience of treating PD (Clinic Thalamus in Wolfheze, The Netherlands, where Jon was treated by psychologist Ad Nouws and psychiatrist Dr. J. Wiersma).

The first appointment was quite a revelation as Jon immediately felt the psychologist had a clear understanding of his symptoms and situation. Over the next months, the psychologist tried various approaches to discover what lay behind Jon’s inactivity. Much of this process was difficult for Jon who felt challenged and sometimes badgered by a coalition of wife and therapist – but he persevered as one possible diagnosis after another was examined and ruled out.

Was Jon depressed? He didn’t feel depressed: no excessive unhappiness, withdrawal or despair. Was he in denial about having PD? Well, to some extent, but not pathologically so. Were there signs of dementia? It was a huge relief when that, too, was ruled out. Jon himself thought he might suffer from apathy (basically an absence of any kind of emotion, good or bad – and often said to be worse for the relatives, since the patient is inherently indifferent). But that didn’t entirely fit either because under the right circumstances, Jon still had happy moments with friends or grandchildren.

There was an important clue, though, in the strange fact that Jon would never ever take the initiative to see any of the people he enjoyed spending time with. This lack of self-motivation and initiative is not uncommon in PD and seemed to fit Jon exactly. He could join in and enjoy activities started by others, but if left on his own would essentially do nothing at all.

With a good hypothesis as to the diagnosis, Jon was referred to the centre’s psychiatrist to see if medication could help. To our great surprise, the psychiatrist suggested Jon should take methylphenidate (better known under the brand name Ritalin). Apparently, in doses quite a bit lower than those generally used to treat ADHD in children, methylphenidate can help bring focus and aim back into the lives of those who have lost these to brain damage. It has been used off-label to treat patients with stroke or traumatic head injury and is now also being used by a few PD patients.

In January 2010 Jon started on one dose of 10 mg a day, which was increased over the next few months to 10 mg four times a day at approximately four-hour intervals. It took about a week before he felt convinced that the drug was having an effect, but from that point on it’s no exaggeration to say that it transformed Jon’s life. He has regained his focus, initiative and much of his concentration. He plans ahead and has busy days full of meaningful and enjoyable activities. He even feels more in control of his disease and better able to deal with the ups and downs it brings him. In a nutshell, Jon has his life back, and I am delighted to have my husband back.

If I had not continually pressed my opinion that there was something wrong with Jon, if he had not been fortunate enough to be treated by specialists in the mental, emotional and cognitive effects of PD, and if he had not been prepared to continue with the appointments despite his belief that his reactions were entirely normal, Jon would still be on that couch today. Little has been written on the use of Methylphenidate for PD, and hardly anything is known about the long-term effects. Having had such positive results, we are keen to add our experience to the growing body of knowledge, and to tell Jon’s story as a message of hope for others who find themselves in a similar situation.

Hypo-activity

JON: It would have been nice if my psychiatrist had turned out to be young, black and musical because then I could have titled this blog “shrink (w)rapping”. But he isn’t so I can’t, and it wasn’t a particularly good joke anyway – but hey, cut me some slack: I’m a sick man. At least both psychologist and psychiatrist agree that I have a pathological lack of drive, or as they say in shrink-speak “auto-motivation”.

What this means is that I don’t do things. That includes things I hate (like filling in tax forms) but also things I used to actively enjoy. I just sit there like a large lump of lard – sometimes with the TV on, most times with it off which is perhaps even more worrying. The psychiatrist was called in to advise on whether drugs could help get me out of this rut where psychology alone could not. He suggested two possible routes of action, Ritalin or Bupropinol.

Yes, Ritalin is known mainly as the drug of choice against ADHD (attention-deficit hyperactive disorder), and while admittedly my condition fits with the first two letters, no-one can accuse me of being hyperactive. But the psychiatrist explained that Ritalin works by focusing the mind and concentrating attention, which sounds just the ticket for me. Also, it has the advantage that it acts quite fast, so I would know in the course of just a few hours whether it is having the desired effect.

Bupropinol, on the other hand, is an anti-depressive used against apathy and suchlike – and, oddly, to help people stop smoking. Its action takes weeks rather than mere hours to appear, and since I (and Marie and the psychologist) don’t think I’m depressed, this seems a less attractive option. So after being sent home to think about the options, I have decided that I’m going for Ritalin first. Watch this space.

Actually, I’m not sure I’m 100% happy with being given the choice, On the plus side it gives the illusion of control, but the downside is that if there are side effects then it will be because I chose them. And since both drugs would be prescribed off-label (i.e. for a use other than that specified by the manufacturers) I suppose there could be unusual and unexpected side effects. Ho hum.

And another thing: today we get our third potential house buyer through the door. Marie had been cleaning and dusting and generally being hyper (should I offer her some of Ritalin?) and I’ve been cowering in a corner trying to read – rather a good book, as it turns out. It’s called Bad Science and with me the author Ben Goldacre is preaching to the converted – but he has fresh ammunition and some of the descriptions of the utter crap people are prepared to believe are . . . well, you have to see to believe it. The worst example is a teaching pack called ‘Brain Gym’ which is apparently used in UK schools and which teaches patent nonsense such as that processed food contains no water and that water held in the mouth hydrates the brain directly. Sadly, one is not allowed to shoot these purveyors of such garbage, and even if I got hold of a shotgun I’d probably miss because of the Parkinson’s.

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.