The long goodbye

JON: OK, I’ve stolen the title which normally refers to Alzheimer’s and the pain the dementia causes as the patient’s personality gets up and goes for a long walk. But as our move to Denmark gets closer and closer – with the old house now SOLD – I too am finding myself saying goodbye over and over. To my Dutch friends there are hugs and earnest promises to visit, but to my team of health professionals, all of whom have been competent and caring to a fault, it’s a real farewell as I am highly unlikely to see them again. So in no particular order, it’s goodbye to my favourite:

Physiotherapist
Movement disorder specialist
Parkinson’s nurse
General practitioner
Sleep clinic staff
Couple’s therapist
Psychiatrist
Social worker
Dietician
Psychologist
Pain clinic staff
Occupational therapist
Speech therapist
Neurologist

With friend like these, who needs enemas? I just hope that I will land with as good and dedicated a team in Denmark.

Very soon now, we will get the keys to the new house, and not for the first time by any means we will start a new life in a new country (well, new to me anyway). We should be used to it by now – Hong Kong, London, Holland, now Denmark. Moving is supposed to be as stressful as getting a divorce, but I think we have it down to a tee. Sure, it takes a lot more planning and requires an earlier start now that I have PD, but we’re pretty good at this stuff.

Next week, we meet our new neighbors – I’m keeping my fingers crossed that all will be well, particularly that the village is free of psychopaths (unlike here, where feral teenagers shot at us through the window) and fundamentalists (unlike here, where everyone knows which church everyone else attends, and knows that we don’t attend at all).

And it will be interesting to compare the Dutch and the Danish health care systems. Marie has ferreted out the name of a GP near the new house who has experience with Parkinson’s, and her sister knows which neurologist I should request. We’ll just have to take it from there. I’m sure you’ll hear all about it here.

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.

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…

Piping for Parkinson's

MARIE: We got back from Glasgow late last night after a wonderful week at the World Parkinson Congress. I had been looking forward to it for some time, but Jon had been more apprehensive and worried that it would be difficult and depressing to see others further along in the disease progression. Others we talked to at the Congress had had the same fears, but everyone – including Jon – found instead that it was a huge relief and liberation to be among people where PD was the norm. Nobody thought you were slow-witted just because you took a while to answer a question and nobody thought you were drunk just because you weren’t too steady on your feet. Bliss.

Over to JON: I’d been somewhat apprehensive about going, because I didn’t really want to see people in end-stage Parkionsons, and there were a few of those around – but they were OK, as it turned out, and it wasn’t frightening at all. Dinner on the first night was just me and Marie, while on the second night dinner was replaced by a huge reception for all the delegates (a bit of a challenge to juggle conference bag, wine glass, canapés, business cards, pill box and walking stick all at the same time, I can tell you!).

On the third night we joined up with a couple where the wife had attended the same talk for carers that Marie had been at, and we spent the last evening with a group of Parkies who all knew each other from one of the internet chat forums. These people came from all over the world, but what does that matter for a man who already lives most of his social life in cyberspace?

Back to MARIE: We learned a lot about Parkinson’s, both from listening to the presentations and, at least as importantly, from meeting others with PD and their partners, learning how they cope and sharing experiences. There were some pretty emotional moments too, particularly a speech at the opening ceremony that really hit the nail on the head and explained to all the researchers in the audience how imperative urgency is for those who live with a degenerative disease such as PD. (You can read the full text of the speech at http://www.wobblywilliams.com/DPBR3.html.)

I think we (Jon especially) have made some new on-line friends, and I know we’ll be very keen to join other PD events in the future.

By the way, the Congress is encouraging everyone to sign a global Parkinson’s pledge that calls on governments and organizations for more urgency, more joined-up thinking, and more involvement of people living with the disease in the efforts to find a cure. If you have PD, you need to sign this. If you are reading this blog but don’t have PD, Jon and I would count it as a personal favour if you sign the pledge. Go to http://www.parkinsonspledge.org/ to read the text and sign the pledge online.