31. The London Vitality 10km – An Explanation

The title sounds rather dramatic, however, I feel I really need to give everyone a proper explanation as to why I have pulled out of the run.  Lots of people have generously sponsored and supported me.  I must just add, that my sponsorship is being transferred to another sponsored event for Parkinson’s UK, a 2 mile walk which I am confident of achieving (touch wood).

Crickey, this was a huge decision.  It was very easy to sign up for the 10km, just click and fill in a few details, and done.   That is being a bit too simplistic as I honestly did give it a huge amount of thought, it really wasn’t a willy nilly decision.  I trained properly and up until a couple of weeks before the run I was still raring to go and do it.

As soon as I told friends and family that I had pulled out of the 10km, the reaction has been wonderfully supportive.  I asked for no emojis or comments on social media.  As I also frown upon electronic head tilting and the frozen peas (or tinned mushy peas, which I randomly discussed with a random person) would probably damage the computer.

The most common reaction when I told people was that they thought it was the right decision and they were actually relieved as I had been so ‘all over the place’ – that probably isn’t a medical term, but I think it should be.

I have had many amazing emails/texts/message in a bottle/calls/letters and face to face chats*

*For the younger readers I need to clarify that is actually sitting in the same room as someone and talking to them whilst not being distracted by anything else.   Sitting in the same room and texting each other doesn’t count, nor does ‘Multi Gencom**  talking and on your mobile googling, ‘how to remove avocado stains from an antique chaise lounge’.

** ‘Multi Gencom’ – Multi Genre Communication – using more than one method of communication, possibly for different purposes and to different people simultaneously, ie texting and chatting and googling simultaneously.  The obvious danger is ‘Multi Mis Gencom, ie ‘talking’ to so many people at the same time that the conversations get confused in the flux.  For example,

‘Yer Mate Half a Shandy down the Wotsitsnames would be Dandy – on wayz see you slater’ sent in error to Great Auntie Sheila

‘That would be marvellous I do enjoy a bit of crocheting.  And the lavender cushions we made at Creative Company add a glorious aroma to my sock drawer’ sent in error to Big Bill Baloney who you are meeting for a pint.

Anyway(!), on with the blog :

So what has happened?  If you have been one of my marvellous close friends who has supported me in so many ways over the last few weeks, please read the rest of this paragraph.  Please, then switch off the computer and you can go about your daily lives.  In a nutshell – thank you, thank you, thank you – I genuinely don’t know what I would have done without you.

Now, please leave quietly in a single file, please consider our neighbours.  Also, if you are going to the pub, mines a ‘g and l’.

Now they’ve gone I can tell the four of you who are left, the rest of the twaddle.

Meds have been unpredictable for a while.

A recap : PD bubbles along doing it’s own thing and meds ‘control’ the symptoms.  If you are a newbie who has better things to do than read 25,000 words, here is a brief ‘in my words’ description.  The meds for me are miraculous when they work, BUT they are unreliable.  So that can be the difference between walking and hardly walking, smiling and sobbing.

In the couple of weeks prior to the run, meds have been switching off up to four times a day without warning.    This has been scarey as not only do the motor symptoms kick off, but my mood has been crashing.  My mood crashing is not me getting stressed about anything, it is not me consciously crying.  I just start to sob uncontrollably for no apparent reason.   I appreciate that this is very difficult for those who are with me.

People just want to help, but actually there is very little they can do.  Friends with PD know this and I think I have said it before that ‘you don’t get it unless you’ve got it’.  The unpredictableness, the lack of rhyme or reason why symptoms kick off.  However, I have called upon my friends who have come to my rescue at a moments notice, to just sit and be there – thank you.

Slept badly doesn’t necessarily mean a bad day.  Eaten well and hydrated well doesn’t necessarily mean a good day.

The only thing which definitely makes symptoms bad is STRESS (capitals obligatory) which I have written about in blog 5.

Recently I have found that quiet and meditation can calm some of the symptoms.

For me, living with PD is all about keeping going and learning new skills.  but I have only realised very recently that resting and meditating is not a waste of time.  It is essential and makes a real difference – more in a future blog.

Physical Activity + Learning new Skills + Meditation/Rest = Better PD Person

So in summary, a combination of the following were my reasons for withdrawing from the run :

  • The extremely unpredictable meds would make the run even more difficult.
  • No training for two weeks prior to the run.

What am I doing about these problem meds :

  • I have an appointment with a PD Consultant to discuss meds.
  • I am continuing to exercise daily.
  • I am trying to eat more to put on some weight.
  • I am trying to factor some short meditation into every day.
  • I am approaching life with a positive attitude and limiting stress as much as possible.

PD Update :

Randomly the past week has been back to the usual rubbish unpredictableness, I can put up with that.  I wish I knew why the two weeks prior were so so awful.

And actually as of this exact moment I am feeling almost totally tip top (ish) … I love life when everything is in some kind of, albeit wonky, equilibrium.   (Hoping that is the correct use of the word.  If it’s not, I trust it’s not a lesser known expletive).