The Thief

Bit by little bit, day by passing day, Parkinson's takes things from us. From both of us. And that's why I call Mr P 'The Thief.' He really is the most wily and underhand sneak thief and sometimes I thoroughly hate him, even if he does occasionally bring along a random kangaroo - more of that later...

A string of thefts

The thieving begins slowly and stealthily, so slowly that you don't even notice it's happening - a little bit of this, a little bit of that - until eventually you wake up to find something else has gone, something else is lost, something else is no longer possible - another skill, another ability, another activity or task has been stolen away, never to return.

Another skill, another ability, another activity gone

And often you don't realise it's gone until you look back from a place of impossibility and say to each other, 'That was the last time; we didn't know it, but that was the last time.' The phenomenon of 'the last time' is a sad one. If only we HAD known, we might have done things differently, or we might have done more... So many last times. But none of us can really know, and so it becomes doubly important to really enjoy each day, each happening, just in case - just because you never know. And you don't want to be in danger of looking back with regret and letting the 'If only's kick in.

So many 'last times' but we need to avoid regrets and "if only"s

And with Mr P, the theft is relentless. Over the last 12 years, Euan has slowly lost his fitness, his strength, his dexterity, his ability to work and run a business, his ability to sea kayak and to climb mountains, his ability to really enjoy social gatherings, his ability to drive his beloved car, his ability to plan and make fantastic things with wood. He still takes fantastic photographs, but processing them is increasingly impossible.

Jointly, we have lost the chance to have the retirement we'd hoped for, to travel, to explore, to do practical projects in the house and garden, to join others for days out and activities. Gradually, over the years, my personal losses have accrued, too. Thanks to Mr P, I have lost my freedom, my fitness, my figure, my financial independence, my career, my belief in myself. I am struggling now to hold on to my creative hobbies and my beloved sea swimming. I doubt I will ever kayak again.

Mr P has stolen from us both; the theft is relentless

And now we find we have to face the biggest theft of all. But we are lucky, we are a great team and we will face it together...

A rubbish Christmas present

Three days before Christmas, we saw a specialist who confirmed my growing fears that all the discombobulation Euan has been struggling with in recent months was indeed due to the development of dementia. Parkinson's dementia. It seems that Mr P even has his own special variety; he has only gone and engaged the services of his very own dastardly accomplice, Mr D.

Lucky us. Thanks, Mr P. Welcome, Mr D. All said through firmly gritted teeth.

Whether we like it or not (NOT), Parkinson's dementia has arrived and is here to stay, and so the stealing away becomes ever more poignant and problematic. As Euan put it on the way home, "Well, that was a pretty rubbish Christmas present." It was indeed.

Mr P has engaged the services of a dastardly accomplice

Euan is losing his ability to concentrate, to choose words, to decide, to organise, to read, to understand, to remember how to do things or what as been said, to follow a discussion or argument, to find his way. It's all happening very slowly, and luckily we have been in the care of a fantastic neuro team for the last four years, so this significant change in Euan's decline was picked up promptly and is being acted upon. We will have support from a specialist nurse and Social Services and Euan has started to take a drug cleared for use with Parkinson's patients (Rivastigmine) that is already making him feel more alert and 'on it' - all great news!

Fighting back with humour and exercise

Euan has been struggling with lots of strange delusions and hallucinations in recent months, so it seemed somehow fitting that, on the morning of the consultation with the psychiatrist, Euan woke up with a kangaroo for company.

We had a merry few moments discussing whether or not the kangaroo should accompany us to the appointment. Euan felt it might do a better job of answering any tricky questions (What day is it? What did you have for breakfast?) but then we both began to feel a bit concerned - what if the psychiatrist could also see the kangaroo, and started talking to it as well? We could find ourselves in even more of a pickle.

In the end, and a little reluctantly, we left the kangaroo at home.

We decided not to take the kangaroo to the consultation...

We have chuckled a lot over the last couple of weeks at the thought of that kangaroo - maybe we should just have put a lead on it and taken it along for a laugh? The situation couldn't have got any worse!

We had also considered going to our 22 December appointment in our favourite Easter fancy dress, to show solidarity over the fact that Euan often doesn't know what day it is. Decorum and convention won out, but we want you to know that our sense of humour has not been lost amongst the pages of this dark new chapter, and it will continue to play a key part in helping us get through.

Exercise is crucial

At the end of a very long and helpful consultation, I asked the doctor what else we should be doing to support Euan. He said there was one single thing that above all others would make a difference. Exercise.

Thank goodness for the arrival of the chariot - Euan would have been struggling otherwise, and I think I would have been in despair. So, we have committed to daily outings and daily physio and I am hoping we'll get Euan back on the rowing machine before too long as well.

Suddenly, exercise has gone from being a standard part of our toolkit in the fight against Parkinson's to an absolute lifeline in this new scenario, as we struggle to take on Mr P's dastardly accomplice along with Mr P.

We need to hold onto that exercise lifeline tightly; and we need to make each day count, with humour and good grace and true team spirit.

Indeed, 'Make every day count' is our new mantra. More of that in my next post. Hope to see you there x