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.