I WANT  TO DANCE- FIGHTING PARKINSON'S

I was telling my neurologist about "freezing" episodes in public, and described the humiliation and embarrassment I felt.  He responded by saying I had no reason to feel that way. It seems to me that despite being the local expert in Parkinson's Disease and being the son of a mother with the condition, he has  little understanding of what it is like to have "young onset" Parkinson's.  So I am writing this - to show what it is like, at least from my viewpoint.

I was 47 when Parkinson's hit me while I wasn't looking.  (I'll call it parkie from now on as that's as dignified a name as it deserves.)
My introduction to Parkie was in the autumn of 2004.  The day that changed  my life completely (though I didn't realise that for some time) was such an ordinary, even boring day.  I had one of those niggling headaches, the kind that doesn't really hurt but just makes you irritable.
I'd taken a couple of Ibuprofen and was at my desk at work testing some software changes (I was working as a computer programmer at the time.)   Suddenly, the headache increased to a really sharp pain, then, before I'd had time to say "Ouch!" the headache disappeared.    At the same time, my upper left arm began to twitch - it felt like a small engine pumping away.   However, I'd been sitting still and leaning n that am for several hours, so thought it was jut a cramp and went for a coffee-break.

The twitch was still there next day, which surprised me, but  it didn't hurt so I ignored it. Like most of my family I'd always had an essential tremor in my right hand so a bit of shaking was routine.  Plus I was brought up in the belief that if you can stand up and think clearly then you took a pain-killer, got on with life and didn't bother a doctor.

Over the next year the shake got a bit worse and I got a bit better at ignoring it.  My father was dead by then and mother elderly and a little vague, so with few close friends there was no-one to comment (I've always been a bit of a loner).

It was about a year after the shaking started that my boss called me into a side-room and said "You're shaking all over the office, have you seen a doctor?"   "No".   "Well - go and see one now" .   Hadn't thought the shaking that obvious.)

I went to my GP and showed her.  She said "I've never seen that before" (really ?) and referred me to St. Peter's hospital in Chertsey.

It took several months (and a lot of time in waiting-rooms) to complete the tests I needed.  I still have nightmares about the ECG and those little clamps they put on the breasts ( couldn't they at least have drawn the cubicle curtains ?), but then I've always had a bit of a phobia about anyone touching that area.

Eventually I was summoned to the "Movement Disorder |Clinic, where everyone sat in the waiting room not moving.  One of the neurologists was sitting at a desk holding  a tatty folder containing mostly illegible notes.
A woman, who looked like a nurse and turned out to be one, was standing by the window.  The neurologist got started with some fairly routine remarks and was obviously building up to something, before pausing and announcing the need to answer a phone call - a feeble excuse as we could both see through the open door two women busy monitoring the phones at the reception desk.
The nurse briskly followed her, so I did the obvious  - walked over to the table and read the file.  There it  was, "Parkinson's Disease"  as I'd feared.
Had I known just then how much it would change my life and character, I would probably have killed myself, so it's as well no-one told me what to expect, ignorance was definitely an advantage.

The neurologist came back into the room and confirmed it was Parkinsons, and there was some discussion of further treatment. I don't recall much of what was discussed (though I did say I'd rather not start any medication for a while) as I was trying to work out how to react - there didn't seem to be much point in getting emotional;  it wouldn't make any difference and then I'd just have to calm down again.  I do remember the nurse looking at me in a slightly puzzled way as though I'd missed some sort of correct response - what I wonder did she expect ?
I'd done some research and though hoping for a "trapped nerve" diagnosis, expected it to be Parkinsons, so there was no error of surprise and therefore no shock, or I might have reacted more, especially with the rather casual method  used to break the news.

Another appointment was made for six months, then I left.  My only close family was an elderly mother becoming too vague and forgetful to understand (luckily, in this case), and I've never been one for getting close to friends, so I drove t o some nearby woods (Virginia Water park) and after sitting a while walked into the woods for a good scream - trees don't complain.  Then  I went home and got on with things.

I did tell my mother (since died) but played it down and said "probably Parkinson's".  I don't think it really registered with her, thank God, and she died two years later before my life was really disrupted by Parkie.
It being quite normal in my family to have shaky hands, that part didn't make much difference - I still find the walking difficulties much more trying than the shaking |(with a mouth the size of mine, some food usually gets in !)

About a year later, I woke up one morning and couldn't get out of bed.  Living alone, there's no point in yelling for help, and being desperate for the loo I soon lost my temper, and forced myself  up and moving.  Though at the time time I didn't think much about it, I wonder now if that was a second stroke, as it was a few weeks later I noticed my left leg shaking a bit and bought my first walking stick.

TO BE  CONTINUED