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 …

 

21. Super Positive Post

The last blog, Defining Moments, was a bit ‘head tilt-y’, and I know some people read it and were a bit sad about it.  So in the interests of dopamine production, this is a super positive post.

This is a live-ish blog about this morning.  The miracle of tennis happened again.

I got up at 7am, took meds, and struggled around until meds kicked in about 8am.  I went off to tennis at 9am.

I played tennis for an hour with my ‘coach’.  I am not sure why I put coach in inverted commas because that’s what he is.  I suppose it just sounds a bit fancy, saying I have a ‘coach’.   Thinking about it I suppose it is the same as one of my children saying they had maths for an hour with their ‘teacher’.

Over analysing as usual, I’ll start again.  Don’t worry, not the whole 20,000 words.

I played tennis this morning at 9am for an hour with my coach.  When I play tennis it’s as if I don’t have PD.  I can change direction, hand/eye co-ordination is great and I can run.  But I then struggle to get back to the car park after (sorry to put that in, but it’s true).

More about tennis in another blog.

PS A bit of admin.  If you have subscribed and haven’t been receiving emails notifying when a new blog post is up, then please check your junk/trash email.  When you fill in the subscription email/name details and send them off, you will immediately get back an email asking you to confirm you are a person and I have the correct email.  There are some people on the email subscription list (that only I have access) to who are still ‘awaiting confirmation’.  So please check your other inboxes.  Thanking you.

 

20. Defining Moments

Before I start this blog I need to say something about the last blog.  Blog 19 is the first blog I have published which I haven’t been happy with.

Firstly, apologies for making you even think about novelty records, let alone attempting to do a routine.

Secondly, as you know I started this blog in January 2017, four and a half years after diagnosis.  If I went straight onto blogging about PD today, without giving some background, it could be quite confusing.

So the background is needed so that the present day makes sense.

  • For example:
  • ‘I won Wimbledon today, and you didn’t even know I played BLANK’
  • (sorry, I couldn’t resist another gameshow reference – it is obviously tennis).
  • For the record : ‘I didn’t and I do’.

Blog 19 is how I was in June 2016, however PD has progressed so it is not accurate for today.  It frustrated me when I was writing it, but I needed to describe the build up to my running.

I have nearly finished all the background blogs.  This next blog 20 is about now, April 2017.

On with the blog : ‘Defining moments’

Warning, I go a bit off piste with the next bit, waffling about my life-punctuation theories.  If you don’t like waffle (firstly well done getting to blog 20), please jump half a page when I get ‘back to the point’.

We are all on a road trip (sounds much more exciting than a journey).  I think of life as a book about that road trip.  We are born as a capital letter and end at the full stop.  However, we don’t run headlong to the end, we twist and turn along the way.

Life is punctuated by defining moments, events which require a change of direction, they can be happy or sad, expected or unexpected.  Even if the defining moment is negative, e.g. failing exams, it is still a crossroads that requires action.

I think defining moments are punctuated by commas and semi colons (are you keeping up – there is no prize at the end).

  • Commas, I see as a brief pause before a change of direction.
  • Semi Colons, I see as a longer considered pause before a change of direction.

Personally, I tend not to use the semi colon very often.  Admittedly I am not sure where to use it.  I rarely use it in life as I am too impatient, and would rather use a quick ‘comma’, than a considered ‘semi colon’.

Thankfully the semi colon has reinvented itself as the wsf*, it has never been so busy. *wsf – winkie smilie face.

Back to the point :

As I have said in many blogs it is my walking that is causing the most problems when meds switch off.

Recently, however PD has been stopping my walking in a new way, which is when my feet are almost completely stuck.  To the point that I try and propel myself forward, my body moves but my feet don’t.

The new walking problems had started to make me reticent about going out.  So immediately I have sprung into action.  I have :

  • Contacted a PD nurse and asked for advice.
  • Discussed with my family.
  • Talked through with the Dagenham Dancers.
  • Researched ways to take back control.
  • Updated the ‘panic plan’* on the fridge (first point is ‘don’t panic).
  • Got emergency medication – which should work quickly if I get stuck.
  • Purchased a walking stick.
  • Got a Blue Disability Badge.

*panic plan : first point is ‘don’t panic’.  This is on the fridge with friends telephone numbers, advice, music playlist and top tips.  This is for me and my family if things go pear shaped.

This constant change in my symptoms and impact on my life is PD attempting to disable me by taking away not only my control, but also my ability.

So I see this as a defining moment, it has made me take action and has introduced some new words : Disability, Blue Badge, Walking Stick

  • The Blue Badge

The first time I associated myself with the word disability is when it was suggested that I apply for a Blue Badge.

I mentioned it to my medical professionals, and rather than saying ‘you’re not disabled’, they thought it was a good idea.  Now, this was a new one, they didn’t bat an eyelid when I mentioned a disabled blue badge.

The first challenge was completing the online application form.

Now, as you will know if you have been paying attention, PD doesn’t tick boxes, it doesn’t conform.  How was I meant to squeeze all of the information about the randomness of PD into the tiny boxes on the form.

For example, ‘How far can you walk ….?’  That needed an essay.  It is not an exact science, every question needed the answer starting, ‘it depends…’.

The council said I should print off a form and add some accompanying information. So they received quite a pack of information, a couple of essays describing some scenarios where my walking was difficult and changed quickly, with meds switching on and off.

I also needed a passport photograph, which had to be countersigned by the library.  I obviously picked an ‘on’ time with the meds to go to the library.  I felt a bit odd getting them to sign a disability form when I looked so well.  I didn’t look disabled. However, if I had waited until meds weren’t working, I would have found it difficult to get there.   I don’t think the librarian even noticed, she checked it was me and signed the photographs – she probably noticed my grey roots more than my apparent lack of disability.

Forms completed, photographs authorised.  All I had to do was post it.

I kept putting off posting it, which was ridiculous.  The envelope was waiting to be posted and the post box was only over the road.

However, when meds were working and walking was okay, I didn’t go and post it, as I thought ‘I don’t need it’.  However, when I was really struggling and could hardly walk, ironically, I couldn’t get over the road to post it.  Finally I sent someone else over the road to post it.

The Blue Badge arrived, and I did cry.  After all it wasn’t a club I was keen to be a member of.

The nature of PD is so changeable.   It means I can park outside places and not worry about whether my meds will hold out.

So I must think of the Blue Badge, as an enabler.  It enables me to park outside places and nearer the entrance to places.

  • The Walking Stick

On Saturday I went to the local mobility store (I didn’t even know we had one), and purchased a walking stick, which was really an emotional moment.  It wasn’t top of my shopping list.

Two ways of thinking about it :

  • ‘Poor thing, now a walking stick’, sympathy, tilting head, touching arm (just bring your own frozen peas).
  • ‘Great, she’s doing something about it, and has purchased something to help her, which happens to be purple’.

The walking stick has really helped:

  • I can lean on it.
  • Clonk it along next to me to give a beat.
  • Kick it to start momentum.
  • People’s attitude towards me changes slightly when they see the stick.

Honestly, it is not just an excuse for another shopping opportunity (but there are so many genres, designs, colours).

So the word Disability is now associated with me in an official capacity.  This is definitely a defining moment.

But rather than making me feel disabled, the Blue Badge and Walking Stick enable me (sorry that is a bit ‘head tilty’).

If it is the difference between doing things, and not doing things.  I’d rather be out with a walking stick, parking close to the venue.  Than staying at home because walking is difficult and I can’t park.

Life is all about balance so I purchased the walking stick and a bass guitar in the same week.

 

 

19. Running/Walking

  • Wun (w-un)
  • To move along at the same speed as walking, by taking steps in which one foot is lifted before the other foot touches the ground.
  • W(alk)(r)un
  • A ‘blend’ word formed of two or more words – yes, another made up word.

An advance apology : I apologise if I repeat myself.  I realise I have written about walking and running before.  As I have said this is my most debilitating problem at the moment so it is bound to feature in many blogs.

The not so small print : Please do not start any form of physical exercise without first consulting a medical professional.  Exercise doesn’t necessarily mean squat thrusts and dips a la Superstars.  It can be daily stretches or a dog walk.    Also, if possible please check with a teenager before leaving the house to exercise to ensure you are not committing a fashion crime,

On with the blog :

As I’ve said before, when meds switch off or symptoms break through, PD can make me slow and movements stiff.  This can be anything from slight to severe.  Walking can become anything from difficult to virtually impossible (yes, there are even nuances of symptoms).

One moment I could be walking fine and swishing about without a care in the world.  Showing off, weaving between people and taking it all for granted.  This can change in an instant and I stop walking like a switch has been flicked, and vice versa.

I find it difficult to understand and I often think how it must look to other people.  At the moment sometimes if you saw me at 9am you may think all was fine.  If, however, you saw me at 4.30pm ish often you could be forgiven for thinking i was always quite disabled by PD.  (I am sure I’ve said some of this before, but I haven’t got the energy to go back and check, afterall this blog is now around 17,000 words long).

Since I can remember I have walked automatically.  Not in a robotic way, but in a ‘I don’t think about it, I just walk’ way.  However, my brain must be giving out instructions without me being aware, as when meds switch off it’s like I have forgotten how to walk.

Okay, a challenge for me.  To try and find an analogy which people will relate to, involving remembering how to move.

So a selection for your delectation :

For tap dancers (a niche market) : ‘ Do a double timestep with break, right now’.  Now some will do it automatically, but some will have to think it through and break it down.  It goes something like this (although apologies if I have misquoted the steps, and unintentionally invented a new step, maybe a ‘double back flip ostrich step’).

  • Shuffle, hop, tap, step, tap, ball, change, shuffle, hop, tap, step, tap, ball, change, shuffle, hop, tap, step, shuffle, step, shuffle, step, shuffle, ball, change

For the rest of the world :

  • Do the Superman song
  • Do the Birdie song
  • Do the Pizza Hut song
  • Do the Macarena

I am assuming even ardent collectors of novelty records will have to think for a couple of minutes before getting the routines going.  (Obviously these examples don’t cater for the whole world, apologies to non tap dancers and those with more ‘rockin’ taste in musical dance moves).

So when I stop walking, I really have to concentrate to get walking again.   I often listen to music with a beat to get into a regular stride. and think about the way to walk.

  • Swing leg forward, heel toe, big steps, left leg, right leg, swing arms.

Now combine that with Flanrinsto holding me back (see blog 4)

It’s no wonder I shout at people for interrupting, or getting into my peripheral vision,  Walking takes concentration, but for some reason I can break into a run.

I was thinking about the difference between walking and running.  Running is continuous with regular flowing movements, like riding a bike, which some people with PD can do when they can’t walk.  I have yet to try cycling, which I should mention like running, is something I don’t enjoy.

However when I decide to break into a run when walking stops I have to do it instantly.  No good thinking ‘I will run now’, and hesitating, it just doesn’t work for some reason.

I shout ‘I am going to run’ and just go.  I am (sort of) like a sprinter and just go and weave through the crowd.  This has caused quite a few problems with my companions losing me in the crowd.  It has been suggested (you know who you are) that I wear a bright hat, or carry a luminous bag, so that I am a beacon to follow.

To be honest, when I work out what my brain needs to restart communication with my body, it gets it.  So the right music and now the right exercise.

It is similar to giving in to a stroppy child and giving them sweets.

  • When ‘I give in’ to my brain’s requests, I may be able to move better.
  • When ‘I give in’ to a child’s demands for sweets, I may get an overactive child, who may crayon on the walls and not eat their dinner.

I am not, never have been, and never will be, a runner.  I don’t enjoy running, but my brain seems to be able to do it automatically when I can’t walk.

Stop one moment – Ed* (*now this could get confusing, the Editor is talking to me within the blog, and as I am the Editor …)

All of this talk about my brain choosing things I don’t enjoy is negative.  I need a positive thought.  I am relishing the challenge of new activities which I would not have tried pre PD (I still don’t like running though).

On with the blog, and the subject of this post ‘running’ ;

With my new decision to set myself challenges, the need to exercise regularly, and using my new found ability to (sort of) run.  I decided, along with one of my very patient friends, to start running.

Even though I don’t enjoy running, I quite like the idea of running stylishly.

Of impulsively calling out to the family ‘just off for a run’, whilst lightly jogging by the front door, dressed stylishly in ‘Perspiring Jenny’ (you know what I mean). Going for a stylish run.  Arriving back, glowing and eating salad, after having easily done ‘just 15k’.

However, the reality was very different.  After, finally finding something to wear, including two socks (a pair would be pushing it).  I would knock on my friend’s door.  Once she had found two socks, we would spend the next ten minutes on her doorstep trying to get into the app on our phones.  We finally set off.  After half an hour of my friend jogging off and circling back to make sure I was still going, I would finally arrive home unable to get past the bottom of the stairs, I was so exhausted.

We had ‘help’ from an app on our phone, the weirdly called ‘couch potato to 5km’.  Actually, I added the ‘potato’ bit.  It should have been called ‘sofa to 5km’ in my house.

So as not to bore you with the details (running is very boring).

  • Week one : struggled to run for 30 seconds.
  • Week nine : ran continuously for 30 minutes.

That maybe over simplifies the nine weeks of struggle for my friend and I.

We both found it challenging and we supported each other.  I timed my practice runs for when I thought meds would be at their optimum.  Sometimes though my foot would lock up and my friend would have to go and get her car.  I often used my music to get me running again.

We built it up gradually and miraculously could run for thirty minutes at the end of nine weeks.

That should say ‘wun’ as I was very slow.  So although I was definitely running, I was at walking speed.

The problem is when it says ‘couch to 5km’ in half an hour, they are not taking into account ‘wunners’.  Runners may do 5km in thirty minutes.  Wunners take a lot longer.

Undeterred, after nine weeks of training, one sunny Saturday morning in June, I randomly decided to do the local 5km Park Run.  Just to reiterate,  I had done the ‘couch to 5km’ course and run continuously for thirty minutes, but I had never actually run 5km.

Unannounced at 8am, my friend opened the door to a vision in neon pink (no teenagers to check the outfit, too early).  I thank her for not shutting the door and going back to bed.  She calmly got ready and drove to the venue.

To cut the waffle, I will bullet point the run :

  • 9am, run started
  • Ran 4km like a normal ‘wunner’ (very slow and last but definitely running rather than walking).
  • At 4km the marshal said encouragingly ‘only 1km to go, you’re doing great’.
  • Well ‘flipping’ PD decided to stop me in my tracks.  Foot locked and went into spasm and I started crying*

*after extensive research crying does not help.

A couple of marshals started discussing how to get me back to the start.  At first I stood there, stressed and crying.  Then I thought, ‘right I can do this’.

  • I mentally regrouped (change of mindset).
  • Ate a bar of chocolate (small happy dopamine boost).
  • Put headphones on and selected a track (got into the beat).
  • Somehow this kicked my brain/legs into action.
  • I ran/power walked the last km, leaving everyone behind.

I was last and my friend stayed patiently with me.

My time was a ‘personal best’ 52 minutes and 13 seconds

One day, at the end of last year, an email came through about a 10 km run

I won’t waste your time with a multiple choice

I entered it.

It is now 6 weeks to go … crickey.

A few PSes

  • The Park Run was a year ago in June, quite a lot has happened since then.
  • Symptoms and meds have changed.

 

 

 

 

 

 

18. The Morning After World PD Day

Phew what a day yesterday.  World Parkinson’s Day.

I felt the need to blog this morning, in a similar way to the morning after the night before in the olden days after a few sherbets*.  Although obviously then blogging didn’t exist and I would be ringing people individually from a phone box.

A few explanations. a few thank you’s and a few sorry’s, are needed.

However, no sherbets*, passed my lips yesterday.

*I thought I should clarify I don’t meant the dib dab kind.  Sherbet is slang for alcoholic drink.

My day went something like this :

  • A bit of World Parkinson’s Day promotion on social media (including trying to work out how to put a twibbon on my profile)
  • A dog walk with friends.
  • A wonderful few hours shopping with middle daughter.
  • A wonderful Linner* with good PD friends.

*L(lunch)(d)inner (a bit like brunch but mid afternoon)

Day going well.

Then meds unreliable for the rest of the day.  Fine(ish) if all I had to do was watch a box set.  But I was going to the Parkinson’s UK annual lecture in Cambridge, including the pre drinks.  So swishing definitely required.

I will bullet point for speed and to hopefully cut the waffle and head tilting.

  • Walk from Linner to pre drinks.  Running, walking backwards and generally staggering with music on – I used all the tricks.  Arrive at the pre drinks walking backwards.
  • Thank you to my friends who helped me and ensured that today’s headline wasn’t ‘PD person injured whilst getting to a PD lecture on PD day’.
  • Pre drinks – standing and chatting was something I could do, my left arm was having it’s own separate party, but I ignored it.
  • Walk from pre drinks to lecture.  Backwards walking and running worked for a short while.  Then dystonia started in left foot.  I was so close the building was ‘just there’.
  • Thank you to all those who stopped to offer support and the lovely ladies at Parkinson’s UK who rustled up a wheelchair.  First wheelchair ride woohoo (not).
  • Staggered into lecture theatre.  I was exhausted and could walk no further and was told to sit in the nearest seat.  They were reserved, but I was assured that these people would be seated elsewhere.
  • So a million apologies and thank you to those two people who I never saw.  I hope you understand that I really couldn’t walk any further.
  • The lecture was extremely good, clever people talking about research.
  • Lecture finished, foot unlocked, but meds still not working properly.  I needed to get to the station.
  • Thank you to the lovely lady and gentleman for allowing this very chatty lady, who walked backwards, to share your taxi to the station.  It really was appreciated. Thank you so much.

Yesterday reinforced what I have said before about good friends and the kindness of strangers.  Thank you so much.

Phew – what a day.

 

 

17. A Thank You on World Parkinson’s Day

Firstly, thank you thank you to everyone for all your support.  For ‘being there’, for supporting in every way.  I have amazing friends and family (and those in the intersection of this Venn Diagram, you know who you are) – thank you.

It is World Parkinson’s Day, Tuesday 11 April 2017 and it is 200 years since it was identified as a condition by James Parkinson.

200 years, still no cure, and only one UNreliable medication.

On Tuesday 11 April 2017 the WORLD is uniting (if that doesn’t warrant a placard nothing will).

PD is twaddle, but there has been one positive, which has come out of having PD.

It is properly positive (no spinning involved)

Bear with me, I will give you some clues.

  • They pick me up when I am down
  • They listen
  • They eat cake
  • They chat about everything
  • They waffle and faff (in a good way)
  • They are always there
  • I mean literally every single minute of every single day
  • Always there to Skype/message
  • For crying, laughing, speating

But who is it … it is not the even tempered caretaker.

  • They understand everything
  • Repeat nothing
  • Experts in everything
  • Never judge
  • Always empathise
  • Never sympathise
  • And definitely never tilt their head and touch my arm

They are the Dagenham Dancers*

*so far none are from Dagenham, but we are eclectically interesting dancers

As soon as I was diagnosed, I wanted (I needed) to meet other people in a similar situation.  A tall order as we, early onset, are like rubbish undercover agents, moving in the community.

We are holding down jobs, volunteering in the community, running homes, bringing up children. Trying to conform to ‘normality’ and fit in and carry on undaunted.

We don’t have time to have PD.

I can honestly say that the friends I have made with PD are friends for life.  Although PD was the first catalyst for us making contact, it is not all we talk about.  But to have ordinary chit chats about ordinary situations (with a PD understanding) is worth a million sherbet dib dabs.

The Dagenham Dancers are friends for life.

(Just to clarify in case I have confused you (again).  The Dagenham Dancers are a mini support group of friends with PD – I named them, ‘Dancers’ as dancing is good for PD, and ‘Dagenham’ just because it scans well.)

Once we are all cured we will still be smashing friends.   We will eat spaghetti stylishly, stay up late, sleep well, and we will actually be drunk when walking wonkily.

 

 

16. First Impressions

The not so small print :

Warning : This blog has the potential to unlock unacceptable sympathy.

Strictly no :

  • Arm touching
  • Head tilting
  • Diving
  • Petting

Another day, another gameshow.

  • ‘What you see is what you get’
  • ‘First impressions count’
  • ‘Mirrors never lie’
  • ‘The camera never lies’

PD redefines all these phrases.

  • ‘What you see is what you get’
  • Obviously, if I am being pursued by a sabre toothed tiger you can probably assume that the panic on the outside is continuing on the inside.
  • However, if you see me answering survey questions in the high street about the price of hummus, and I’m shaking with a stern, cross face.  Please don’t assume I am a rude, hummus phobe.
  • ‘Mirrors never lie’
  • I caught sight of  a grumpy looking woman walking past a shop window.
  • It genuinely caught me off guard.
  • Especially when I realised the grumpy looking woman was me.
  • Now bearing in mind I am ‘me’ and I knew I was happy, calm and relaxed, I was genuinely shocked by the grumpy, unapproachable look on my face.
  • This was a couple of months before I was diagnosed.
  • ‘First impressions count’
  • I went for an interview.
  • I spent the interview trying to hide my tremoring hand.
  • I didn’t get the job.
  • The feedback was I came across as very nervous.
  • Which I did, as I didn’t tell her about the PD.
  • This was when I was first diagnosed.  Today I would have told the interviewer straight away (and probably given her the link to my blog).
  • ‘The camera never lies’
  • When a photograph is taken, I am worried about how my smile is going to turn out.
  • It usually looks a bit wonkily odd to me.
  • I am smiling evenly on the inside.
  • This was just scarily odd :
  • I was sitting on my own, just sitting.
  • I heard an odd noise, got a bit scared as I was the only person in the room.
  • I thought it was a mouse.
  • Then I realised it was me.
  • It was my arm tremoring, rubbing against the chair.

Actually, in PD terms all of these statements could equally be true.  So if motor symptoms are under control, then my calm sophistication will radiate from the inside to the outside.

I can actually have some insight into the mixed messages that I give out, as in two of the examples I have confused myself.  As I mentioned ‘I am me’.

I have written about how PD affects my whole body movement, through tremor, bad walking, etc, but not about facial expression.  These to be honest, at the moment, I find most distressing.

So although I could easily write another 1,000 word narrative about how PD affects my face, I thought you deserved a break for good behaviour.  Bullet points will suffice.  (Hopefully not all of these at once – that would be a sight)

  • Face muscles become stiff (blank expression)
  • Face contorts with dystonia (think unintentional ’70s gurning competition)
  • Voice goes quiet and whispery as it affects vocal chords
  • Face muscles twitch
  • Staring eyes
  • Multiple blinking
  • Looking grumpy
  • Small facial nuances difficult, a cheeky wink doesn’t happen
  • Nodding in acknowledgement difficult

I have been accused of being :

  • Scared
  • Cross
  • Stressed
  • Worried
  • Cold
  • Drunk
  • Injured
  • Needing the toilet urgently

(but not all at once)

Of course, you may bump into a rude, cross person in the queue for the loo in Casualty wearing shorts and a t-shirt in mid November.  This is not me.

When I was first diagnosed I would sit on my hand to disguise the tremor, I would look at the ground embarrassed to make eye contact.  I was worried that people would think I was incapable if I told them about the PD.

But now I realise this was down to lack of awareness on my part.

So now, you may have noticed, I believe that communication is key.  Breaking the ice with a quip about the symptoms means that I can relax a bit more, and makes me less anxious.  Even if it sometimes confuses the person I have just announced to that I have a disease.

So now I probably mention it too much.  For example.

  • I was trying on some shoes and was fiddling with laces.  I became very aware that I thought I was lacing oddly (however that might be?!)  So I said to the shop assistant randomly ‘I have Parkinson’s’.  The poor person jumped and said ‘I haven’t heard of that brand’.  I replied curtly ‘It’s a disease!’.  My daughter embarrassedly suggested we leave the shop.
  • When I sit in the theatre/cinema I try and ensure I am sitting next to someone I know on my tremor side.  Otherwise I usually turn to the stranger next to me and tell them about the tremor – again they often look confused.   They may inch a bit further away from me as they are now sitting next to an over familiar lady who has a ‘disease’ for the next two hours*

*  Actually this is important.  If I knew how to use the extra facilities on this blog I would do this bit in an interesting bold flashing font.  Obviously not comic sans (far too jokey), but maybe helvetica.  However you will have to make do with capitals.

IT IS NOT CONTAGIOUS

You can now stop virtually hand sanitising after every blog view.

I am very aware of my symptoms and actually, it may surprise you, that (maybe) I have become a bit self obsessed (you are only reading it, feel sorry for those living with me).  Apparently everyone is wrapped up in their own odd bits and pieces, and so apparently it is quite likely that they won’t notice the tremor, unless I hit them with it.

So think about this, on first impressions, erasing (briefly) all your new found knowledge about PD, would you pick someone looking nervous, cross and unapproachable as a :

  • Prospective employee
  • Running buddy
  • Tennis partner
  • Piano player at your wedding
  • Your friend

(actually I am capable of all of the above apart from piano player at your wedding, unless you just want grade 1 pieces)

I have found this blog a bit difficult to write.  I have had a few face ‘bits and pieces’ over the years, but nothing major.  However, just recently I have had a couple of very upsetting times when my face has gone into complete spasm.  I have been quite panicky and upset.

I was panicky about the walking problems when this symptom first reared its head.  But now I have figured out some coping strategies, I am not so stressed.

I need to do the same about the ‘face thing’ (including, learning the medical term).  I need to learn coping strategies and try not to let it drag me down.

Easier said then done.

Parkinson’s is (insert expletive)

A couple of random odes :

An oddly factual ode (which will test your head tilting/arm touching – sorry)

  • On the periphery
  • Yet still in the room
  • On the outside
  • Filled with gloom
  • Please don’t avoid, don’t assume
  • Do please, just cross the room

A (slightly rushed) (slightly humorous) ode (to leave you on a maybe confused, but happy note)

  • I was born to dance
  • And if given half a chance
  • I’ll shake my bootie
  • Whilst eating tuttie frutties
  • Sorry rhymes are deserting me
  • I think I need some chocolate