I remember 4  years ago, when I was living in Kiev managing a large multi-country project funded by the EU, wondering why  I was walking toward the kitchen so slowly and deliberately.  I wasn’t tired but there seemed no need to hurry  and I thought that, at 71, it was just old age.

Winters are cold and snowy in Kiev and the pavements are often covered with a thick, uneven layer of ice and Kyril, my ever-solicitous administrator, had made sure that my apartment was just across the road from our office.  I only ever had to walk short distances and hadn’t noticed slowing down.  My colleagues were all friends and, if they noticed, they said nothing, probably also assuming that it was old age.   In April 2010 the project was winding down, spring arrived and I could take an hour in the morning for a brisk walk to Kreshchatiik Park, climb the hill, walk around the top and return.   I felt as if I was walking briskly but I knew that I wasn’t moving as fast as most of the other pedestrians – even old ladies!  Impossible to ignore too was the strange feeling that I was having to learn how to walk again.  I tried to convince myself that I hadn’t walked recreationally for a year or more and it wasn’t surprising that I was out of practice but I also felt as if I was stooping although my reflection in the shop windows told me that I wasn’t.  I noticed occasionally a tightening of my chest when I was walking – the sort of rawness you sometimes experience when you run in very cold weather.  I thought this was a probably some kind of mild chest infection and Kyril brought me some tablets that he assured me would fix it.

Every month I had to sign (in order to authorise) about 100  payments and at the start of 2010 I noticed that my signature was shrinking.  I could write a ‘normal’ signature if I concentrated and wrote slowly but it was tedious enough to sign quickly.  On the other hand if I did it quickly there was a real risk that the signature would vanish before I got to the end.  The shrinking signature didn’t worry me but I was puzzled as to why it was happening.

Towards the end of 2009 I had begun to bite my tongue with alarming frequency.

Others had commented on my slowness.

Margaret and I went on a tour of China in April 2009 and I was notorious for being the slowest walker, to the extent that I was called the tortoise.  In April 2008 I attended the kick-off meeting of the project that I was managing and which had just started.  The meeting took place in Brussels and I was the only English participant and the only native English speaker.  The others (Dutch, German, Swedish, Spanish etc.) all spoke fluent English and I was used to this and normally adjusted how I spoke – slowing down and using short sentences.  We knew each other quite well and the meeting was friendly and informal but at the end the German and the Swedish lady (my Brussels Task Manager) took me on one side and said, with friendly concern, that they had had great difficulty in understanding me because I spoke so fast and so quietly.  Of course I apologised and promised to do better in future but I knew I’d always spoken too fast and in the heat of discussion I had probably got carried away.

There was nothing to connect these symptoms and I assumed they were just manifestations of the deterioration that is an inevitable concomitant of getting old.

My attitude was not one of denial – I didn’t feel ill in any way, I just had no idea why I was slow and felt awkward.  I returned home to Marlow on Thursday 6 June and on the afternoon of Sunday 10  June, relaxing in the sun in the garden after lunch, I felt the chest tightness again , this time spreading to the left arm which ached in the pins and needles way it does when the circulation has been cut off for a short time.  Margaret (who trained as a nurse at the Radcliffe), and I discussed it and decided to call an ambulance.  At Wycombe Hospital I was given tests and assured that I had not had a heart attack and the heart was undamaged but I had probably had an attack of unstable angina.   On Thursday I had an angiogram and was told that one branch of the aorta was blocked and another 90% blocked but this had been cleared and a stent fitted.  The blood supply to the heart was 85% and a by-pass was not justified.  On Friday I returned home none the worse,  thinking that this explained my symptoms during the previous 18 months.

Of course I was wrong …….. The chest discomfort never reappeared but the other symptoms never went away.

None of them was in any way disabling but Margaret insisted that I see a specialist about persistent hoarseness that I’d had on and off for several years but which was becoming worse and permanent.  Having lived abroad for most of the previous eight and a half years and not been able to use the NHS, I had health insurance and I saw a specialist a week or two later.  He pushed a camera down my throat and told me that my vocal chords were fine and I could see a neurologist or a speech therapist if I wanted to.  He probably recognised the “Parkinson’s face” (expressionless, mask-like) but knew the diagnosis would have to come from a neurologist.    A few weeks later I duly saw one who gave me an MRI scan, blood test and a lot of other tests and said, almost muttered, something about extra pyramidal symptoms and Parkinsonism.  When I asked what could be done he was a evasive and spoke about new drugs like rasagiline.  His parting advice was to “do as much as you can”, spoken, it seemed to me, in a tone that was intended to sound encouraging but which sounded quite the opposite. After this I entered a period of denial based on the absence of tremor. Nevertheless  what I read on the internet about PD and only tended to confirm his diagnosis.

Private health insurance is good for conditions that can be fixed but not for chronic, recurrent or long term conditions. In any case I was unlikely to be able to earn enough in future to cover the £7000/year that full health insurance for the two of us was  costing so I asked my GP for a referral to a Speech Therapist.  When she came to our house in April 2011 I was ready to accept the diagnosis and when I told her half way through the interview that the neurologist had mentioned Parkinsonism she said “That’s a relief. I was afraid you didn’t know!”  She was so matter-of-fact about it that at that moment I completely accepted that I had PD (not Parkinsonism) and that I’d had it for at least three years and probably longer.