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).

 

 

 

 

 

30. Daily Blogs : Sunday/Monday

I have decided that you may not want my ramblings in your mail box every day.  So I have, for your health, decided to collate a couple of daily blogs together.  Just to remind you these are in effect my notes, so are quite brief and to the point.  If you have just ‘switched on’ you will need to read the rest of the blog to understand my ramblings.

  • Sunday: After a late night, 1am.  I woke at 4am wide awake and ‘stop press’ tried a meditation app a friend had recommended for about an hour or so.   Finally went back to sleep, and overslept (which is almost unheard of) so didn’t take meds until 7.30am (yes, I only overslept by 30 minutes, hardly rock n roll).  Usual morning shuffling around with walking stick until meds kick in.  Meds at 11am.  Morning was good and did some bass guitar practise and general household jobs.  Out for family lunch, 2.30pm meds.  Bad movement from 2.30pm, and that dose of meds didn’t kick in properly.  So rigid and neck and back twisting for 3 1/2 hours very uncomfortable (not actually painful, feels like I’m being wrung out).  Took 6.30 meds earlier and slotted in an extra med as out late  The meds for the rest of the evening worked and so had a fab evening at the pub music night.  Danced and stayed up until 11pm (and had a few g and ls).

 

  • Monday: After another lateish night.  Woke a couple of times in the night as per usual.  The day has actually been okay ish.  Meds have generally worked okay, PD still annoying.   As a team effort, tidied and did charity shop bags.  A ‘no passengers’ day, which means don’t stand still otherwise you will be thrown away, so clearing out anything that isn’t useful.  Out for dinner in the evening.  By 10pm shuffling and running low on meds.

 

These past three days have been sooooo different to the twaddle over the past couple of weeks.  The unpredictable crashing of the meds three or four times a day was very debilitating.  The past three days, although PD has been bubbling along in the background, and bits and pieces of symptoms  have broken through, even Saturday afternoon was nowhere near as bad as the past couple of weeks.   So tremor, walking, rigidity, slow movements all popped in and out of my days.

Why – who knows.  Protein interferes with meds so I know I should leave a gap between eating and taking meds.  I did take an extra med late in the evening Saturday and Sunday to get me through the evening, but that doesn’t account for the days being better.

So, if nothing else, these three short daily blogs, demonstrate how living with PD means always clock watching and working out meds timings and eating.

I think I’ll do a daily blog every once in a while.

The next one needs to be a Vitality 10km explanation.  It should have been today, and actually today has been okay ish.   However, it was still a sensible decision not to run, with my lack of training over the past couple of weeks and exhaustion and weight loss.

Crickey it’s complicated.

29. Daily Blog : Saturday

As promised, this is my first attempt at a daily blog.

Just to remind everyone PD is bespoke, and symptoms will be different for different people.  Please don’t alter any meds without speaking to a medical professional.

I am starting this daily blog to keep a record of my meds/symptoms/days for my next medical professional appointment.

These posts will obviously not be as long as previous posts.    They are basically my ‘notes’  in bullet points, and will assume some knowledge of PD.  If you are clicking on this as your first insight into PD, then you may be confused, so I suggest you read this whole blog for some background.

I just plan to do these for a few days, or this may be the only one, who knows.  I will try it and see how I get on.

Saturday :

  • Woke 7am, took meds
  • Waiting for meds to kick in.  Walking slow, shuffley and movements rigid.   Need to use walking stick to get about, trying to organise breakfast.   Really stiff/rigid neck is new thing which is quite debilitating when meds are low.
  • 8am meds start to kick in, gradually realise walking easier and movements start to be a bit more flowing.
  • Morning good – did all ironing, felt quite tip toppish.
  • Meds at 11am and 2.30pm – bits and pieces of PD, but generally meds lasting.
  • Afternoon – went to watch some bands at local pub, meds working okay.   Home about 4.30pm.
  • Meds start to switch off gradually at 5pm, walking shuffling.  Then suddenly plummet physically at 6pm, rigid left arm and neck in spasm, and walking bad.
  • 6.30pm next meds.
  • 7pm try to walk to pub for band night, end up getting a lift as walking very bad and stick not helping.
  • Meds don’t kick in until about 8pm (have had rubbish symptoms since 5pm, and 6.30pm meds have taken an hour and a half to work)
  • Take an extra med at 9.30pm ish to get me through the late evening.
  • Danced for the evening – really enjoyed myself.  When dancing movements flow.
  • Walked home around 11pm, needed walking stick, walking a little bad but okay ish.
  • Had a midnight snack.
  • Bedtime meds.

Overall : Quite a good day PD wise.

These are my notes, so apologies if they are not clear or funny les.

 

 

28. A Daily Blog (possibly)

If you have been paying attention you will have realised how unpredictable PD is, and that recently it has become even more unpredictably unpredictable.

Okay just a thought.  Would it get to the point where the unpredictability will become so unpredictable that it is predictable.  A bit like if you put a monkey in front of a typewriter.  Give him/her long enough and they will produce the works of Shakespeare.  I am not prepared to test this theory with the monkey or me.

I promised that this blog would consist of considered pieces and wouldn’t include photographs of my food.  Don’t worry I am not intending on doing that (yet).

However, I have decided to have a go at blogging daily for the next few days, for a few reasons :

  • To keep a record of the changing symptoms and maybe find some predictableness in this unpredictableness.
  • To raise awareness (I am not sure how aware people can get without having it and I don’t wish that on anyone)
  • The daily record can be used for my next medical professional appointment to show how it changes.

Now I obviously hope that this will jinx the PD into behaving itself so I have nothing to write apart from mad happy days of fun in the sun.

So we shall see, I may only do this for a day, a couple of days or who knows.  Watch this space.

 

27. Ability Aids

This blog is divided into three sections

  1. The Rock Chic Section
  2. The Published Author Section (really)
  3. Vitality London 10km Update

 

1.  The Rock Chic Section

After my Rock Chic* appearance at the charity band night playing bass guitar.  I very very excitedly continued this persona.  I went to see the band mentioned way back in Blog 8.  Just to remind you this is the music which I use on headphones to get me walking again – so extremely excited to see them live for the first time.

*Rock Chic – not my words but I like it.

As always bullet points cut the waffle.  An ideal evening would have been :

  • Friend drove to concert
  • Purchased wristband and hat
  • Had drink in bar
  • Watched support band
  • Chatted in compulsory interval ladies toilet queue
  • Rocked out to band
  • Purchased t-shirt
  • Went home

As this is not a ‘Whodunnit’, I did see the concert, but PD interfered quite considerably. Actually, maybe PD was fighting back from me taking it to the music which quashes it (maybe I am overthinking this).

I will talk you through the afternoon/evening.  No head tilting especially as I have told you that I did get to see the concert.

Meds switched off at 2.15pm.  ‘Brilliant’* I thought.

*I didn’t think those exact words, obviously, something a lot stronger.  However, as I have a self imposed PG classification on this blog then something stronger would be inappropriate.  It is a PG and not a U because some scenes may upset children.  Actually drug references are also frowned upon – thats a fail then.

Spent the afternoon a little ‘miffed’* (see above) at the meds not working properly.

Walking was bad when we arrived at the car park.   So even though it didn’t go with my outfit, I had to get my walking stick out.   I was quite stressed and slightly apprehensive as I approached the door to the venue.   I imagined the following possible scenarios :

  • A walking stick could have been seen as an offensive weapon and I may be turned away.
  • I needed the stick and if I didn’t use it I would be ‘all over the place’ and may get thrown out for being drunk and disorderly (I wasn’t).
  • I could get turned away for wearing an age inappropriate pleather dress (no need to check I am 49, and therefore it is).

Well, actually it was none of the above.  The guy on the door said, looking at the walking stick, ‘If you need a seat later come and see me’.  Now I am assuming he didn’t work for De Furniture Store and wasn’t offering me a disability discount on their new recliners, but was offering me a seat for the concert.

Don’t get me wrong, I wanted to be in general admission (standing) rocking it out disgracefully with the 6’6″ young men, near the pit of mosh.

After only five minutes of standing and watching the support band, I realised I would find it difficult to stand for 2 hours.   Resigned to the fact that we would probably be seated miles away at the back of the balcony, but I would rather see it from there than not at all, I went to see the aforementioned ‘guy on the door’.

To cut a relatively short story, even shorter.

My two friends and I were directed to the front row of the roped off VIP seated area.

Smashing – a new, slightly erratic rockin, seated excercise routine was created.

IT WAS AMAZING

So a potentially rubbish evening, rubbish PD making things rubbish, was turned around.

Staggering + Stressful Concert = Rubbish evening

The Disability Items should be rebranded Ability Items

Walking Stick + Blue Badge = Front row seated VIP and free car parking

Smashing.

2. The Published Author Section

I have hinted that tennis is a miracle and that when I play I don’t have PD.  Well, I have been saving this topic in my metaphorical blog back pocket for a future blog.

But, I am afraid the tennis blog isn’t appearing here.  Drum roll …. I am ‘in print’.  It is in inverted commas because it is the  modern version of the word print, i.e. on a website.  But none the less, I was asked to write the article, the Editor liked  it, and it was published.

So, if  you would like to read it you will need to leave ‘world of blog’ and go to this link

http://www.spotlightyopd.org/living/exercise/tennis

Now I think I need to say now, Janet and this blog are not responsible for any content in links to sites outside this blog.   However, rest assured, Spotlight YOPD is a brilliant site, set up by a brilliant young lady living with Parkinson’s, take a look.

3. London Vitality 10km

Strictly no head tilting or arm touching.

It is with real regret that I have had to drop out of the London Vitality 10km.  I will give details in another blog.  But suffice to say that recently my PD has been much more unpredictable than it’s usual unpredictable self, and I have had to make the difficult decision to pull out.  It is a boring, but sensible decision.  My sponsorship is being transferred to a sponsored event I am doing in June.

As everyone deserves a proper explanation I will explain in the next blog.

Les

 

 

 

26. The ‘standby’ Ode

The past month has been a whirlwind of opportunities and chance meetings, hence no blog for a week.   Sorry if you thought the lack of a blog for seven days was because of your ‘good behaviour’.

This ode is one I completed a while ago, which I have been saving for such a month.

So here is the Ode … normal service will be resumed …

 

I feel better when I feel like me,

when I feel completely free.

When my movements flow,

in that moment I know.

That I’m free.

Free to be me.

 

I feel better when the music plays,

it helps me move, it makes me sway.

I feel better when the rhythms surround,

as my body is enveloped in sound.

For that brief moment in time,

my body again becomes mine.

 

I feel better when I’m with good friends,

funny and caring, amazing friends.

Tea, cake and dog walks too,

it’s incredible what laughter can do.

Chat and chocolate can make things right,

I enjoy the moment and brief respite.

 

I feel better when hitting that ball,

that tantalising, yellow tennis ball.

I move with ease across the court,

impossible you may have thought.

As I strike the ball, and run to the net,

I feel exhilarated and briefly forget.

 

I feel better when I remember what I’ve achieved,

more than I could have ever believed.

I’m so much more than this new facet of me,

this thing which they simply call PD.

 

 

25. Blog Responsibly

‘Blog Responsibly’ should be the first two words of this blog (that’s lucky then).

I thought long and hard before starting to write this blog back in January.  It wasn’t started on a whim.

I realised from the beginning that I would need to ‘Blog Responsibly’, in a similar, but obviously very different way, to the mantra ‘Drink Responsibly’.

‘Drink Responsibly’ obviously refers to being aware of the effect of alcohol.   So one of the many messages this brings is to be aware of the person’s health and how alcohol may affect them and others around them.

In a similar way I must blog responsibly.

  • To be aware of my health.
  • To be aware of how my blog may affect others.

But the blog also brings blog specific responsibility.

  • To ensure readers know this is a personal blog.
  • To remind readers PD is individual.
  • To remind readers to consult a medical professional.
  • To ensure the blog is balanced.
  • To talk about the bad times, as well as the good times.
  • To help people realise they are not alone, and often the most difficult times are the loneliest (and therefore the most difficult to write about).

This is what I signed up for. It would not be awareness if it wasn’t balanced.  This blog must be warts and all (phew, no warts yet).

So Blog Responsibly – this blog is about the most difficult time in the 24 hour clock, the time when everything seems a lot worse.

PD doesn’t just happen during waking hours.

  • PD is : Unpredictable, Unreliable, Unhelpful, 24 hours a day, Every day.
  • Support needs to be : Predictable, Reliable, Helpful, 24 hours a day, Every day.

The blog proper (crickey I think the intro is longer than the blog).

  • I listen to my symptoms and act when they are whispering.
  • I am proactive and do seek help, from friends old and new, medical professionals and the brilliant support lines.

Old friends and new friends (who happen to have PD), have been there for me.  Having PD is a bit like having a baby (bear with me).  After having baby you meet lots of different people, the common interest is parenthood, other than that everyone is different.  Similar with PD.  I have met great people who if it wasn’t for PD our paths may not have crossed.  I could be very schmaltzy and say that another symptom is being a very nice person, but I won’t (but it is).

Medical professionals are an obvious area of support.

Support lines are crucial.  Before diagnosis I had never rung a support line.  Soon after diagnosis I needed to speak to someone.  But I kept putting it off, as I assumed I needed to have a plan of what I wanted to discuss.  After all, when I call someone I generally have an idea of why I am calling and what I want to say.

However, I soon realised that I didn’t need a plan to call.  Just the need to talk, or listen and not feel alone.  Or to ask medical advice.  If no-one rang the support lines the people working there would be twiddling their thumbs, they are waiting to speak to people.  Picking up the phone and dialling the number and hearing someone’s voice who wants to listen has really helped me.

Okay (bear with me and go with it).  Imagine a beautiful rectangular rug with a calming contemporary design.   The rug is quite close cut, and is in a tantalising teal, with a subtle silver star in the centre on which you stand motionless.  You are in a room with a domed detailed ceiling.  You notice how a subtle lemon line loops round and round.  It is quite excitingly intriguing how arse.  Now that was probably a bit of a surprise.  A sudden wake up call.  The rug was whipped away.

So the fabulousness of Saturday night was amazing amazing amazing.

Monday night the rug was removed abruptly at 2am*.  Now if this had happened during the day it would probably not have been as intense.  The night intensifies everything and since PD diagnosis I do not sleep well (yes, another PD thing).

*In case you are not following me.   After the fabulous weekend, when PD was relatively under control, it reappeared suddenly at 2am on Monday.  A bit like a rug being removed and falling flat on my back.

Apologies for the mini pseudo expletive.  I needed a shock word.  ‘Bum’ would not suffice, ‘twaddle’ is ridiculous.  This blog is not the forum for a proper grown up rude word.  The word ‘arse’ probably made you stop and think – ‘crickey the editors in chief are not doing their jobs properly, deduct four squares of chocolate’.  But it’s okay, I meant it to be there.

I got up at 2am and staggered and dragged around (not because I failed to drink responsibly, but because meds are obviously very low in the night).  I was starving hungry, made some jam on toast, put some washing on and wrote an ode (as you do).

I found it difficult to verbalise how I felt, so I got up and wrote a long ode which helped me.  It is a bit random in places as it was written straight off, no amendments.  When I read it in the morning I was quite surprised by it.  Now you may not ‘get it’ but it said how I was feeling at the time.  Below is an extract.

 

I need to talk I need to tell

This is nothing like feeling unwell

It is different, it’s something no one can get

Unless you’re in it, water is wet

I’m desperate for a life I’m desperate for a rhyme

I don’t want to feel like this all of the time

I know this is not helpful, I really do know

That it’s 3 in the morning and there is nowhere to go

I don’t know what to do, I don’t know what to say

I just wish this thing would go away

 

The next morning I was on the phone to a support line.  I just needed to talk.

They really helped.  They listened, they understood, they didn’t judge.

I talked to a good friend.  She listened, she understood, she didn’t judge.

I cancelled Tuesday, it is not often I do that – I slept, I talked to friends.

The following day, Wednesday, was another day, moving forwards.

Positivity returned – thank you to those who were there for me.

 

24. ‘… and the music continues to play’

The not so small print : Everyone is different, PD is bespoke.  Each person with PD will have different combinations of symptoms, affected by different things.   Please don’t alter anything without first checking with a medical professional.

This is an up-to-date blog (unless you are reading on ‘catch-up’).  May 2017.

First a mini multiple choice :

  • I played bass guitar live on stage with a band in front of 72 people at a local pub.
  • I would like to learn the bass guitar and will do it one day.

You will already know which one is correct.

As I really don’t want any of my posts to turn into ‘plinky plonky’, ‘slo mo’ emotional arcs, I am being upfront about what happened.  There is no suspense, I have told you the ending at the beginning.    I remember vaguely reading about 19,000 words ago that this blog is not a ‘Whodunnit’.

I left you with a musical mathematical equation way way back in blog 9 :

(Music + Learning) x Loud rock music = Bass guitar lessons

I have always admired bass guitarists.   From the new romantic bands of the 1980’s with their lovely bass players, to the modern day bass dudes.  I have secretly always wanted to play the bass guitar.

With my new post diagnosis attitude, rather than putting it off.  I started lessons right now.

Although it must seem like I try everything at once, money and time is obviously a factor.  So piano lessons stopped after getting my grade 1.  I felt I had reached the pinnacle of my piano talents for now.  I swapped this for bass guitar lessons.

I borrowed a bass guitar from ‘tech support’.   ‘Tech support’ has added another arrow to his quiver and is now ‘musical hire’ as well.  I have been paying him in dopamine enhancing chocolate.

My bass guitar road trip* so far : (*a journey is not very rock n roll).

I have been having lessons for a term and actually (in a very good way) there is not much PD dramatic humour or emotional arc to report about the actual lessons.

The actual lessons are usually quite ‘normal’:

  • Walk in, sit down, have lesson, stand up, go home.

The only thing ‘PD interesting’ is that I use my blue badge to park outside the music lesson.  It is at the end of the day and I cannot guarantee how good my walking will be.  Sometimes I struggle to walk in, but often after half an hour lesson I walk out feeling like my eyeballs have been polished (again, probably not a medical term).  Amazingly, during the lessons my tremor and dexterity are usually okay, generally nothing dramatic to report.

Smashing, I am now learning bass guitar.  However, playing in the living room is not very fulfilling.  The dog and cat have difficulty clapping (much like me sometimes – crickey PD does affect everything).  If only my husband played in a rock covers band – oh, he does.

PD makes me feel helpless as there is very little I can do to speed a cure.  Obviously I am not a Neuroscientist, and I would be a rubbish tremoring lab assistant.  However, I can fundraise to donate towards research and support for those waiting (im)patiently for a cure.

One of the ways I have raised money is by organising Charity Band Nights.  We held our third fundraiser at the weekend (May 2017 if reading on ‘catch up’).  A local pub gave the venue for free, and three bands very generously played for nothing.  We sold out.

Pre PD* I would have said ‘no’ to the suggestion of playing with the band at the fundraiser.  However, in much the same way as the man from the orange producing district, ‘I said, yes’.

*Actually pre PD I wouldn’t have even been having lessons. I would have put it off until that very very very busy day in the future known as ‘One Day’.

If you have been paying attention, I mentioned that STRESS is a huge factor in making symptoms break through.  So it would be sensible if I had at least one rehearsal with the band.  However, due to one reason or another, mainly ‘life’, I didn’t get round to it.

However, I did put some rocks star riders on my performance :

  • Their bass player had to be on stage with me.
  • He had to continue playing throughout the song.
  • I was under no pressure to play, I would decide in the moment depending on PD.
  • I would like all the blue hob nobs removed from the packet in my dressing room (sorry that is a nonsensical statement, I obviously don’t have a dressing room).

The day of the band night came and I very sensibly did the following preparation, in a non rock n roll way.

  • I had a quiet, if slightly anticipatory stressed, day.
  • As recommended by my medical professional I tweaked my meds slightly as I was going to have a late busy night.
  • I had an afternoon sleep.
  • I ate and drank healthily.

That evening went something like this :

  • Three bands performed.
  • 72 friends came along – enjoyed and boogied.
  • My husband’s band asked me when the time came ‘are you going to do it?’.
  • In that split second I said ‘yes’.
  • I played – 2 minutes 54 seconds – on stage.
  • It was amazing I want to do it again.
  • Flanrinsto sat in the corner all night, well behaved, drinking a bottle of pop.

Don’t get me wrong I was not very good, I got lost half way through and stopped and ‘smiled and waved’*.  *Actually I didn’t wave as PD … (oh come on you’ve got to be kidding).  Lack of rehearsal showed as the band played a different version to my term one beginner music lessons (or I thought they did, maybe it was just me).  A friend kindly filmed my debut and actually it looks as though I am playing sort of the right tune.  I am very very pleased with myself!  My hand didn’t tremor and dexterity was good, being surrounded by the music on the stage I think really helped.

Everything fell into place and it was amazing :

  • I danced all night.
  • I played bass guitar live on stage (did I mention that already, wsf).
  • I made a speech.
  • I went home at midnight.

I obviously must have flukily (probably not a real word), got the meds, rest, food, hydration and everything else right.

I think the additional things which got me through the evening were :

  • Positivity
  • Amazing friends
  • Happiness
  • Music
  • Laughter

I thought at one point whilst dancing at 11pm, ‘Crickey, have I even got PD?’, I should refund everyone now.  I then started to worry about looking like a fraud, everything was going so well (those with PD will understand that feeling).  I quickly quashed that thought and enjoyed the evening.  As that thought could well have tipped me over the edge and into stress mode, switching everything to ‘rubbish’.

Crickey it is complicated.

However, PD did interfere a bit.  I had difficulty walking home.  Hardly surprising, dopamine was definitely depleted.  ‘Phew still got PD’ – that is a joke.

THAT IS A JOKE, I reiterate THAT IS A JOKE.

I would give anything not to have PD.

PD IS A JOKE

 

23. The London 10km – An Explanation

The not so small print: I am looking over my glasses.  Meds and exercise must be discussed with a medical professional before undertaking any new activities.

I can hear you muttering ‘entering the London 10km, please explain yourself, that’s madness’.  If however I have mis eavesdropped and you in fact said something about the 1970/80’s Ska band, I apologise.

I am an oxymoron (please keep the ‘oxy’).

I am sure even those who have been paying attention will be confused by the two, seemingly contradicting blogs.  Blog 19 Running/Walking where I dared to mention that I had entered a 10km run, and Blog 20 Defining Moments, about getting a walking stick and a blue badge.

These two blogs are so extreme that I felt an explanation was required.  It must read like they are written by different people.  Which, in way, I suppose they are.

A recap : PD is constantly deteriorating.  This is due to the lack of dopamine, which is continuing to decline.  Meds attempt to replace the dopamine temporarily.  They do not slow the progression.  They attempt to help me operate normally.  Even when meds are working PD symptoms are the same in the background, they are just hidden by the meds.

So, in effect, there are two of me (apologies if you have no hills to run to).

The ‘PD me’ : who can hardly walk, would be rubbish in a seaside puppet show, would win an inter-country jelly on a stick competition, and is constipated (sorry but these things need to be said).  This is when meds aren’t working and all PD symptoms have broken through.

The ‘Normalised me’ : who can swish about and do normal things normally.  When meds are working and everything has fallen into place.

Sorry, make that three of me ; The ‘Almost Normalised me’ : who is not quite normal (now, those thoughts are downright rude).  In other words, meds are neither on nor off, they are sort of working.  Some PD symptoms randomly break through.  This is probably the most common ‘me’.

Obviously in this Venn Diagram of life, the intersection would be a slightly odd one, where PD is kicking off, but I can play tennis and walk backwards.

At the moment I am training and preparing for the London 10km at the end of May.  However, there will be two of us in the race.

I know PD will be trying to find ways to disrupt my run by :

  • Extreme tiredness.
  • Dystonia in my foot.
  • Left leg locking and dragging.

I am trying to outwit PD by :

  • Training.
  • Using music.
  • Working out a race day schedule of meds/food/drink etc.

Words : drugs versus meds.  As I mentioned in an earlier blog I prefer the word ‘meds’.  Meds sounds more ‘boring married mother of three’.  Drugs sounds more ‘dangerous criminal’.  Although it would be wrong of me if I didn’t (for my amusement) occasionally just announce that ‘I need to take my drugs’.

NB PD meds are not performance enhancing.  They (wait for it, another made up, blend word) attempt to Normalance me.

My odd definition of my new word : Normal(ise)(Perform)ance : Normalance.

Meds attempt to bring my dopamine levels up to a normal level, pre PD.  In the case of the 10km run, I will work out a schedule of taking them to give me the best chance of keeping my PD symptoms at bay and performing at a normal level.

As you will appreciate, this is not an exact science.  I will be working out when to eat, drink and take meds.  But I cannot prepare for every eventuality, influences which are outside my control can make PD symptoms break through at a moments notice.  For example, crowded places, tiredness, stressful situations.  Yes, I am aware that this event is 10,000 people running a 10km race in London.  I am not totally stupid (again, I can hear what you are thinking).

However, as you know there is a big but (no double ‘t’ please).  Meds are unreliable as they may kick in, they may switch off.  I just don’t know what will happen.

I will attempt the run and I will try my very best.  If I don’t complete the 10km due to leaves on the line, then that is fine.  However, if i don’t complete the 10km due to PD disrupting the proceedings I will be upset.

However, to put a positive spin on it, if things go PD pear shaped.  I will have a photograph taken in a nice new t-shirt on The Mall.

Living with PD is a bit like childbirth (please bear with me).  Childbirth is a quite dramatic (some may say, traumatic) event, but for some reason women almost ‘forget’ how bad it was. This is important as otherwise no one would have more than one child.

Obviously for equality in this blog, men also need to forget about the crisis of childbirth.  How they missed on tv the penalty shoot out in the big England game where Gazza cried, because they had to urgently hold a straw in a water glass for a lady with ‘extreme temporary tourettes’.

If you are not following me, then a brief explanation.  When I am normal and operating well, I tend to underplay how bad it can become when PD is bad.  Actually, if I didn’t temporarily do this then I would probably be reticent about doing anything new and adventurous.  So, for example, the 10km was entered in a brief moment of ‘I can do this, things aren’t that bad’.  In a similar way to ‘yes, we will have another baby, the birth wasn’t that bad’.

I am looking forward to the whole experience of taking part in the London 10km.  A friend is kindly running with me and I envisage it will take around 2 hours.  I am running for Parkinson’s UK, give me a wave if you happen to be in London.

I will report back,

22. ‘Not Another Ode’ Ode

 

This thing has started to occupy each waking minute

And I have even started to dream about it

It is constantly getting in the way

And creeping into each moment, of each day

It has become an obsession, a reason to be

It really has become all about me.

 

But wait, it might not be what you think

If I could, I would give you a cheeky wink

This is not another one of those sad odes

It doesn’t include an analogy about toads

I am sure this post won’t make your head tilt

I know I am waffling, but what do you think

Could have taken over my life as much as PD

It is this flipping blog which has engulfed me.

 

I’m in danger of getting ideas about my station

With suggestions of releasing my ramblings to the nation

And publishing a book and making some money

So I could retire, and move somewhere sunny

But the Neuroscientists would get most of the money

So I wouldn’t retire and move somewhere sunny

 

I have 20,000 words already written with ease

But who would really buy a book about a disease

Even though it is positive and funny as well

Would you spend money on a book about being unwell

So, I will write and eat chocolate which helps me feel fine

And maybe one day I will appear on Jeremy Vine

I would never have thought I’d be writing a blog

Next thing you know I will be getting a dog.*

 

*to be continued …