Category: THE BLOG

Parkinson’s is changing every part of me,

It has become an obsession a reason to be.

Occupying every waking and dreaming minute,

I am sinking deeper and deeper into it.

I wish I could return to how I was before,

When I wasn’t such an awful bore.

Don’t worry I haven’t got Double Parkinson’s. It is currently May 2020 … and I have been in lockdown for 81 days.

In fact it is no exaggeration to say that the whole wide world is in some form of lockdown flux … fluctuating between being in and out in an awful Hokey Cokey scenario due to the awful global Corona Virus pandemic. So people have been staying safe and staying at home for weeks. By now I wager that people will have even tidied ‘that’ kitchen drawer and read the instructions to all their appliances, including the salad spinner at the back of the cupboard. After reading the instructions for the first time, thinking ‘ooh this is a welcome addition to my lunch making regime’ discovering it went to the Charity shop in the sky in 1972. I know that some people have got so bored that new people have been reading this blog. The first post describing my diagnosis is so far back that I thought it was worth reposting … and then any new people can go ‘oh that’s what she’s on about’.

Just to clarify I was diagnosed in November 2012 and started the blog in January 2017, so the first five years are told retrospectively. Today May 2020 I have been diagnosed nearly seven and a half years.

So here goes … in the same way that the tv has a summer schedule of repeats … here is a repeat of the first blog post. If you would like to carry on reading in chronological order please look at the front page. … under archives.

Repeat : 1. Diagnosis Day

My body seemed to have started it’s own game show without consulting me first.  Random, seemingly unconnected, things kept happening to my body, as if my body was whispering to me and I couldn’t quite work out what it was on about.

• Early 2012: a few examples of the interestingly ignorable whispers …

I was lunching with a friend and noticed it was difficult to twiddle my fork.  Answer : just clumsy.

Then I noticed that my left hand shook.   I convinced myself  that it happened specifically when I was hungry.  Answer : I have always suffered from the (probably) non medical condition of ‘hollow legs’ (being constantly hungry).  So the shaking was affectionately referred to as being ‘borderline hyperglycaemic’ (as in needing to eat immediately), an excuse for a bar of chocolate?!

NB I must point out that I am not medically trained (you may be surprised by that fact).  I would like to apologise to any ‘hollow leg’ sufferers, or suffers of ‘hyperglycaemia’, borderline or otherwise.

Tap dancing (yes, really) became very difficult.  I would regularly say after a class that it was definitely more of a mind work out.  My left leg seemed to be ignoring instructions.

All of these things were ignorable.

• April 2012.  A new symptom appeared, which was annoyingly UNignorable (more of a) prod and raised voice, than a whisper.

Whilst typing the final essays for my degree (yes, really), my left hand stopped typing.  This was now annoyingly UNignorable.

I just knew it wasn’t physical.  I had been able to touch type for about 25 years and I just knew something wasn’t right.  Trying to explain to people that my left hand wouldn’t listen to my brain seemed a ridiculous thing to say

I now got assertive.

I was lucky enough to have private healthcare, so this sped me through my appointments.  So I don’t bore you I will do the same with this part of the blog.

First suggested diagnosis was a trapped nerve in my neck.  I had Physiotherapy for 6 months.  My left arm would tremor and would move awkwardly.  The symptom was changeable and some weeks we appeared to be making progress as it seemed to have improved and then next week it seemed to be worse.  Shaking and movement would also change during the treatment.

As no improvement after 6 months I was referred to a Neurosurgeon.   After the consultation and MRI scan.  The Neurosurgeon said it definitely wasn’t a trapped nerve and thankfully the MRI scan was clear.

November 2012 : As no diagnosis and I was worried, the Neurosurgeon referred me to a Neurologist.

The Neurologist put me through some surprisingly unscientific tests.

• Sitting on the edge of the couch, arms outstretched, he asked me to subtract 7 from 100, with my eyes shut.  I was briefly concerned.  Diagnosis based on primary school maths didn’t appear very scientific.  He reassured me he wasn’t testing my maths but whether my arm shook when concentrating – it did.
• Walking across the hallway, he said was I aware I dragged my left foot – I wasn’t.
• Then the final test, and this was the big one, the almost conclusive one.  You may think, blood tests, electrodes, swabs, special super duper computer analysis – no.  It was what I affectionately call the ‘tweety bird’ test.  Where I hold up my hands and move quickly my thumb and first finger to demonstrate a tweeting bird shadow puppet.    My right hand was fine.  However, my left hand had problems.

He said there was no need for any other tests (there is another scan but he was so sure of his diagnosis it was unnecessary).

My Neurologist leant forward in his chair, and said directly :

‘You have Parkinson’s Disease’.

He immediately followed this by reassuring me that I was not alone, he would be my Consultant and I would have a Parkinson’s Nurse.  He also said there are medications to allow me to live an active life.

My initial thoughts may surprise some people …. Relief.

• Relief it wasn’t an inoperable brain tumour.
• Relief that someone finally believed me.
• Relief it had a name.
• Relief that I could now, after months of faffing, finally do something about it.

The Neurologist offered me medication there and then.  However, as I have always avoided even Paracetamol I said no.  And actually the symptoms, although annoyingly unignorable, at that time, weren’t actually stopping me doing anything.

In that moment I can honestly say my life and outlook on everything changed, and actually it might surprise some people, that although in lots of ways for the worse, in some ways for the better.

End of Diagnosis day post. If you would like to carry on reading from the beginning then the next post 2. The Morning After can be found if you go to the front page of the website and click on archive blog posts.

Over and out.

Stay safe.

Please follow the rules … many of us have been in isolation for over 70 days …

I’ve thought of a tiny positive,
Of having to socially distance,
Your friends won’t be able,
To pinch your pick n mix.

Wearing a mask means,
You’ll save money on lipsticks,
It’ll also hide your wrinkles,
No need to botox your lips.

The tubes will be a nightmare,
But there should be more space,
So you shouldn’t have to travel,
With an armpit in your face.

You might have to queue more,
Live life at a slower pace,
But it’s a small price to pay,
For keeping us safe.

The Parkinality Poet

I must write a billion times ‘I must blog more and, when I do, I must remember to post said blog post’

Below is a blog post I wrote near the beginning of the lockdown … I put it to one side so that I could ‘sleep on it’ and re read the next day to ensure I hadn’t said anything silly (as if?). But then forgot (unusual) … just logged on thinking I must do a post, found this draft so posting this one …. will leave it a bit and then post again … thank you for your patience ,,,, les

Probably written around beginning April 2020

Day oscillation in the PD House … and I have been in isolation since 29 February 2020 … This is the first day I desperately want to put on some lippie and go out on the razzle … so full of energy … almost pre PD energy ….I just need to darnse.

So silent disco going on … currently one direction teenage kicks …. I know I’ll over do it but atm I don’t care. Energy like this strikes so rarely. A bit (but not a lot) like being desperate for the loo …. when you gotta go you gotta go, when I gotta darnse I gotta darnse … sorry this oscillating isolation is sending me a bit batty.

I wonder if really serious people ever have a mad five minutes …. you know those important, grown up, people you see out and about …. do they ever let their hair down … sorry for the digression … question is rhetorical and does not count towards your final mark so no need to answer.

Okay (crickey I hate it when I start sentences, particularly paragraphs, with that word). Isolating because of the coronavirus pandemic. No end in sight …. lots of theories, but no definite date.

I am not sure what I’ve written before, and apologies for repeating myself if I am.

Okay (?????). Went into isolation two weeks before official date. Really don’t want to get this bug. My huge fear is going into hospital and PD not being taken into account. In ‘normal’ times there is often a friend or relative who accompanies or takes you into hospital who can reiterate about the importance of meds and PD. However, at time of writing, people are going into hospital alone, so who could tell the nurses. I have my stuff in a Parkinson’s charity rucksack and my meds/prescription/dosage list in my bags.

Parkinson’s is so confusing and often i am seen as drunk or boring or both …. and that is just the physical symptoms. Dyskinesia (continual moving) affects me in so many ways and i look like i’ve lost the plot to those who don’t understand PD (and tbh who does), freezing looks like I am being stubborn and fed up and unhelpful (when I’m not). And they are just the physical symptoms … the invisible symptoms, such as constipation, apathy, depression aaaah … its carp carp carp.

So trying to keep myself occupied in isolation … difficult … ‘People’ say get into a routine …. which would be simple if I knew PD’s agenda. However getting up each morning to do Tai Chi when dyskinesia is kicking off or freezing is stopping me is impossible and when I can move ‘normally’ then domestic chores need doing (boring but true, no homehelp and the house needs to be a non-health hazard).

So i have in my mind stuff … which the idea is that i remember this list and then according to all the variables, PD, me, the weather, energy levels I pick what to do when.

My list (other lists are available)

Moving activities :

Dancing, exercise, cleaning, washing, brushing teeth

Sleeping activities :

Sleep

Sitting activities :

Making cards, painting, reading (yeah right), writing poems

Over and in (obviously we can’t go out)

Ps launch of my second book delayed until end June

Don’t worry ‘normal’ ‘humour’ will be reinstated intermitantly

People with Parkinson’s are not special, they are ordinary people but with an extra portion of ‘chips in gravy’* … *insert something awful of your choice, and if you like chips in gravy, four letters ergh

So everyone will be experiencing a multi faceted myriad of emotions (such as ‘angry face’ ‘sad face’, ‘standing chick’). But that extra portion of ‘chips in gravy’ adds a mess to an already messy situation (are you following this?)

The government has generously done some pigeon holding … so Parkinson’s Disease is in the pigeon hole entitled Vulnerable. But there are two sections … one super vulnerable so those with lung conditions and other underlying conditions. Parkinson’s is in the not quite so super but still quite super Vulnerable category.

So I am self isolating for what looks like will be 12 weeks.

So lots of time to do lots of twaddle. But as everyone is yawn fed up with disease discussion I am planning for Parkinson’s Awareness Month a few things, but not everything is about Parkinson’s, but then as I have it I suppose it is by default.

So take a look at the Parkinality facebook page, you tube channel, podcast and books …. I will post different things and the same thing on various platforms ….

planning … a few ode videos, obviously. a live broadcast with the wiseish man on facebook with singing odes and chit chat, and some other bits and pieces wts.

Busy bumble aaaaah

les

A plan
I had several poetry readings arranged over the coming weeks which have obviously been cancelled, so I thought I would harness my enthusiasm and instead start a podcast

The short version :

Search on your usual listening app such as iTunes, Spotify etc. If you don’t know what I’m on about and don’t have an app then look on the front page of www.parkinality.co.uk to find a link.

Look up Parkinality Podcast, subscribe for free to hear original poems written by The Parkinality Poet aka Janet Bric-a-Brac aka me.

The long version :

To keep myself occupied I thought I would try to write a poem a day. To be caring and sharing I thought I would share them as a podcast … so Mr Tech Guy (thank you) has set up the Parkinality Podcast on some ‘platforms’.  But don’t worry no need to venture to Paddington, you can find the podcast on your usual listening app, such as iTunes and Spotify or indeed on the front page of www.parkinality.co.uk you will find a link to another listening device which is free.

In all cases you can subscribe to the podcast and will be pinged when another is posted.  It is free and you can unsubscribe at any time … 
The poems will be a mixture of fresh new ones, and ones from my two books.

Enjoy or avoid the choice is yours

Its over to you

‘Negativity is a disaster, the cold makes us feel worse, stress might make us freeze, all three are the Parkinson’s curse’ from ‘Another Book of Parkinality Poetry’ Feeling better? Margery and Melvyn

https://www.troubador.co.uk/bookshop/poetry-short-stories-and-plays/another-book-of-parkinality-poetry/

(30% of royalties earned going to The Cure Parkinson’s Trust)

Warning this blog contains no useful information ….

Remember : We are all canoeing in the same direction, but each canoe is 10 metres apart to avoid huffing on each other.

Flaming heck (insert your preferred stronger expletive) … everything has gone upside down (again insert your preferred stronger expletive) due to the global health pandemic which is Coronavirus ….

This is testing my positivity …

Okay, quite stressed – the unknown, the unplanned, the out of control negative me is (I must admit) squashing me at the moment.

Felt the need to post trying to find the right words, when the words are morphing from comical positivity to depressing negativity. Okay now the over thinking me is taking over. Crickey this oxymoron business is keeping me busy. More mood swings than a theme park on the moon ( I hope I haven’t lost ‘it’ altogether).

First of all; The wonderful Parkinson’s Vision 2020 conference in Leicester in April is cancelled . A lot of hard work, has gone into pulling this together. I have every hope that the enthusiasm can be packed away in those inedible ‘what is that’-esc crisps (can’t be bothered to explain that), and unwrapped again at a future date. We can then hit the ground shuffling to reinstate all the wonderful speakers, exhibition stands and (dairy free) chocolate cake, to hold a marvellous conference. Take a look at the website for information about the cancellation

Many things surrounding Parkinson’s Disease are unknown, ‘how do people get it’ ‘how do we cure it’ ‘Why?’ … but three things are known. Stress, The Cold and Negativity do tend to make symptoms worse.

24 Hour News reporting surround the Coronavirus, is feeding my, already enhanced, negativity and stress levels. I know I don’t have to watch it but also I can’t bury my head in the sand. Also, the added worry of if I don’t watch it having that little voice at the back of my mind whispering ‘if you don’t watch it you might miss something’ causing even more stress.

The mere fact that it is called 24 hour hints at the fact that it is always on. Flicking between channels on radio, tv and social media, I find everyone is talking about it … whether it be a ‘ grown up news report from a reliable source’ through to the latest joke reposted a qerzillion times from ‘I think I’m funny dot com’.

A slight digression for a moment: writing this blog is like ‘a meerkat carrying a large marrow on its head’ (A balancing act, although if I have to explain it, it’s not funny ((I ‘heard’ that)))

No matter how many times I write about not being medically trained, I still worry about people taking what I write round the wrong way. So I might spark a thought in your mind with what I write, but please go to a medical professional to discuss that thought, do not take things into your own hands. Symptoms and progression are so diverse and bespoke everyone is so different.

So I repeat … ‘I am not a medical professional, please do not change any medication or alter or do anything without speaking to a doctor, nurse or medical staff and then only act under the guidance of your medical professional’

Back to the blog …

In paragraph five I wrote ‘already’ enhanced stress and negativity levels. I say ‘already’ as not only is anxiety a PD symptom, a side effect of Parkinson’s medication can be feeling increasingly anxious. I have found when I am feeling particularly low I can get into, what I call, a spiral of paranoia. I will leave that thought there. Please speak to your Medical Professional if you or a friend/family notice any changes in mood, habits or routine or increased anxiety. As I did and my consultant gave me advice.

So I need to try and manage this negativity and stress, and find some kind of positivity – where positivity is just feeling less negative.

Unknown of Coronavirus … clever people working very hard on it

Feeling alone … pick up the phone, engage on social media

Worry about running out of medication… speak to doctors surgery about getting extra supplies in and asking a friend to pick up the medication, make a note on calendar to re order.

24 hour news … limit to watching a couple of times a day (well try to)

Spending too long on the computer … set alarms to make sure I get up and walk around.

Worried about not being able to reciprocate offers of help … I read a Facebook post this morning about this very stress. I might not be able to drive, or go out and help but I can give a recipe. recommend a playlist, chat on skype.

Going stir crazy … each evening write a list of things to do … so a tidying job, a creative job, an exercise job, a food based job, and go with the flow.

Still waiting for news of what the powers that be have decided is the best course of action for those with an underlying health condition.

I think I’ll write of list of things I could do if ‘given’ a few months of ‘staying in’

Crickey sorry not the most informative, interesting, funny or exciting blog post, more confusing and lack lustre

I think I’ll go and static-ly dance in the conservatory (with the lead piping)

oh yes I listed three things at the beginning, stress, negativity and the cold. As far as we know at time of press Coronavirus is not a 2020 Weather Influencer.

Over and over

LES

I wanted you to be the first to know… there is another book of Parkinality Poetry.

I have just received a massshiv box of books ….

And the weight is ; 152g

And the name is : ‘Another Book of Parkinality Poetry’ by The Parkinality Poet … why, because that’s what it is.

Forty, yes 40, new poems ….

I plan to launch it at the Parkinson’s Vision 2020 (YOPD) in Leicester in April, where I will be (wo)manning an exhibition stand.

Watch this space ….