104. Let me eat cake *now* …

I will be having chocolate cake … a lovely dairy/lactose free giant slice …

It is not a celebration

But I deserve chocolate cake

Seven years diagnosed.

Flaming heck.

Who’d have thought I’d be sitting here typing like a normal person at 0722 on Thursday 21 November 2019.

I certainly didn’t think that on Wednesday 21 November 2012, seven years ago today, when I was diagnosed.

Actually, I didn’t think that about half an hour ago as well.  Half an hour ago PD was throwing everything at me with knobs on … meds now kicked in miraculously and I have a brief window to type and speat (repeatedly self pity)

7 years flipping heck.

I haven’t posted a sensible considered post for a while.  PD has been throwing everything it has accumulated so far in it’s ‘bag of stuff to throw at me’.  I say ‘so far’ as I know there is more to come.

When I was diagnosed my initial feeling was relief, relief it wasn’t an inoperable brain tumour. Relief this ‘thing’ had a name and I could tackle it head on.  Just to ‘reassure’ you I am not an over positive mad woman (apart from when I am) that it wasn’t just relief, I very quickly became angry, frustrated etc etc and every other emotion you can think of (apart from that one)

Two things I was told in those first few weeks …

I will have ‘five good years’ and’ I am not ill I have a condition which needs to be managed’

‘Five good years’ was certainly true …. Those first five years I look back on as the ‘Parkinson’s ‘honeymoon period’’.  As with everything PD you really have to be in it (and more specifically me) to understand.  PD is so bespoke that even fellow PDers may well not relate to what I am going to write.

When I went along to my first appointments the symptoms I had been having were unignorably PD, but they were also not impacting that much on my life.  Don’t get me wrong at the time they were really horrible and upsetting (but nothing like today) but despite that I was still getting out there doing my stuff.  I also had an instant ‘disease pass’ into a new circle of friends, support groups, and leaflets coming out of my ears.

Finally, someone believed me, I was fortunate to have a brilliant supportive team of medical professionals, and so never floundered.  Well I floundered, but in comparison to today that was a paddle in a puddle, today is more a struggle in the sea, I will not waste my valuable time thinking of an alliterative duet for the next stage. 

I am not burying my head in the sand … I am NOT burying my head in the sand. Okay, would you blame me if I just lay my head on the sand and peeked from behind a sandcastle for a while?  But I don’t want to waste my emotional energy dwelling on what might happen when anything could.  I may have an unpredictable degenerative neurological condition, but I could also get hit by a number ten bus like every other person on the planet.  Everyone’s future is unknown.

‘I am not ill, I have a condition which needs to be managed’

I do and I am trying so so hard to manage it, but PD is ramping up the times I switch on and off with freezing, dyskinesia and dystonia.

It is difficult to put a positive spin on not being able to move or not being able to stop moving.    Often when I explain this to people, people don’t know what to say so they say ‘and which do you prefer?’, before they realise what they have just said.

My management skills are definitely waning … I started off as a Ferguson and am now more of a Flump.

I was going to post the other day but my PD typing was so bad I had to give up.  So here goes, seven years and what’s it like? …

Friends ask me ‘what I do’, ‘how I fill my time’ … etc, and the 80 zillion dollar question ‘what are you doing this week?’

To be honest a lot of medical appointments for PD and my various other twaddles.  These appointments/consultants are spread across counties.  I always make sure, apart from when I don’t, and then I (sorry PD) kicks me later, that I take notes about all my other ailments to make sure the medical teams cross reference medication etc.

One thing I have started (and you may have noticed) is writing and spreading awareness.  This is everything a traditional job isn’t.

Hours flexible

Deadlines flexible

Last minute changes are not challenged

And I can miss whole days without me sacking myself

PD is becoming so unpredictable it is mind-blowing

Hours or minutes of apathy are common.

The dictionary definition of apathy is ;

apathy, NOUN, lack of interest, enthusiasm, or concern (Cambridge dictionary)

https://dictionary.cambridge.org/dictionary/english/apathy

This is like saying,  …. Yawn … can’t be bothered to think of an analogy.  Suffice to say it is a complete understatement.

I was that person who did things at a zillion miles an hour and got things done – that’s neither good or bad. Just a statement.

Today I am still occasionally that person, when meds are working well and everything goes to plan, then I do try to do as much as I can as I don’t know how long I have until PD decides to switch me off again. However, this is self-defeating on many levels, especially the level where I use up any surplus dopamine by doing too much and leave the rest of the day in disarray.

This is difficult to explain to a friend I am letting down, ‘sorry I can’t come to the long arranged theatre date, I have lost interest in spending time with you’’, really doesn’t define PD apathy.

PD apathy is a complete weakness and inability to, in layman, terms, get my ar*e in gear’.  Not due to the apathy described in the dictionary.  This really is difficult to explain, but in a nutshell it is a usually dynamic, efficient 51 year old, reduced to a apathetic, crying, inactive ‘being’.

The dyskinesia (continual movements) is now getting so bad that at times it is (almost) dangerous for me to leave the house.  The freezing at times (almost), stops me leaving the house.

So, I have many contingencies if I am really stuck including ‘phone a friend’ to help and ‘phone a taxi’, to get to places.

7 years on my feelings are very different; anger and frustration.  Why me, what did I do wrong?  Also, the feelings of anger which regularly surface when I really struggle (and I mean really) to do something simple like walk across the room or make a cup of tea

Oh yes, back to Tuesday.  I was due to be selling Christmas cards at a local voluntary charity pop up shop. I do it every year and I really enjoy it.

Well this Tuesday it was cold and PD was really kicking off.  I got as far as the driveway and booking a taxi.  And then in the zero degrees cold of a Tuesday November morning at 9am I had no choice but to cancel the taxi and then let the lovely patient ladies know that I wouldn’t be at the card selling.

In the paragraph a few paragraphs above the more observant amongst you (put a star on the chart and a chocolate in your mouth) will have noticed the ‘almost’ in brackets.  This is the first time I can really truly say PD has properly stopped me doing something.  Of course I dealt with this in an extremely grown up fashion, sobbing and swearing on the driveway.

The wise-ish man is often (annoyingly) correct, and a while ago said that one of the (many) bad things about PD is crossing things off.  Now, up until now I have been a tad annoying and would say say (trying to be positive) that I am ‘ticking things off’ rather than ‘crossing them off’. 

So, for example, although giving up tennis upset me, I would say in an annoyingly pseudo positive way;

 ‘I’ve done tennis,’ tick’, what’s the next challenge?  Aah table tennis that’s (a bit) similar (ish)’ (apologies to anyone who knows it isn’t similar)

Rather than, the negative, ‘PD has made me cross tennis off of the list of things I can do’.

Even driving which I hated anyway, when I gave up, it was a tick rather than a cross and scribble to make me feel a bit positive (ish).

Well PD has now made me so unreliable I realise I can’t reliably hold down this voluntary job.  Which to be honest has really upset me.  I can’t say ‘tick’ and move on, as I really don’t want to stop, PD really has crossed this one off.

So, it could be doom and gloom today, but I will attempt a positive spin, I certainly haven’t been dormant or apathetic over the past few years (apart from when I have been).

My life is unreliable and unpredictable, my state fluctuates and rebounds about like a fluctuating and rebounding thing. 

And still some people have never seen me switched off that is how ridiculous this thing is.  Some will think PD  it is just freezing, some won’t even know I have it if they always see me for the switched on minutes … it depends on so many factors and changes so quickly.

In the words of the small child with the ringlet …when I am good I am very very good and when I am bad I am rubbish.

Phew, like that economical chocolate bar, the curly wurly … that was a long one.

going in search of that Vegan Chocolate Cake …

Hmmmph

103. A great evening

do not adjust your sets (that’s tv not train), unless you need to of course.

yiperdeeedoohdah a positive night post…

a smile to accompany your toast and lactose free chocolate spread

first ‘proper’ poetry reading evening with (now) fellow writers – coz apparently that is wot I is.

not that I haven’t read properly at the others. but many were open mics where I have to bribe the audience away from their beer with the promise of ‘dust from space’ in order to get their attention.

last nights people listened and laughed and clapped

pd kicked off but I didn’t rant

fun evening thank you

hoorah

101. I shouldn’t be posting now

okay daylight hours on a Monday and I shouldn’t be posting

I don’t usually post in this state because one it is very slow going typing and could take me a while and also I am not feeling positive

this is a low time … it isn’t night time it is daytime. but it Is completely rubbish no one can understand what this feels like. to be completely rubbish in the cold light of day , people are about now which is good but then oh I don’ know what I am waffling about. people I am talking people without pd are going about their daily business and I can but I can’t. I don’t know what is going to happen from one minute to the next.

atm when I am switched on I actually feel veery normal, swishing about and being a speed walker round the supermarkets and almost annoying swishy person again. I feel invincible. amd wonderful

that makes the switching off even more horrible I have had a glimpse of normality I like it and I want it to always be like that. I am sorry for posting this but then you are subscribing for this and I did warn you at 5 years it was going to get worse. now seven years and the extremes are awful oneminute frozen my fingers are just about moving very slowly thank goodness for auto correct. but I was totally dyskenesic any minute and well I could on,

I know I will re read this and go flip I shouldn’t have sent this.

and I want no sympathy that is not what this is about . awareness of hidden invisible pd and other conditions that are invisible to others. everyone has something going on. please cut people slack (does that come from fabric cutters) when they are a bit off you have no idea what is going on inside.

over and out. I am ‘fine’ as we all are

100. 100 and not out

Now AWBC* (all will become clear).

One hundred had to be a good post … a poignant post, a meaningful missive, not pathetic prattle.

I’m on the radio … A new radio station organised and presented by people with Parkinson’s (but you don’t have to have it to listen to it) called Shaky Radio is available to listen to on the internet. Full of really smashing stuff including music, meditation, medication, musings and mice.

So find it at www.shakyradio.co.uk I am on at 5pm today (Wednesday 9 October 2019, in case for you today is Thursday 28th November 2019191).

Www.shakyradio.co.uk

I have just realised I have actually done more than 100 posts if you include my new sections, numbered separately … (I won’t be doing that as it will spoil it for me). So forget I’ve said this, but you probably wouldn’t have notice unless you are a VOP**

** very observant person

98. BITR

In answer to your questions :

  • Back In The Room
  • I know
  • A couple of months
  • Not sure yet
  • Not really
  • Yes it is

Okay that bit over and done with it lets GOWI (Get On With It – please keep up)

Me, okay sorry ‘my patient tech guy’. has been busy earning chocolate working on and revamping the blog. I know it’s still purple, revamping, not rebuilding.

Have a scoot round the new sections and links (although do exercise caution when clicking links, I cannot be responsible for careless clicking, broken links, changed sites or the information on other peoples sites ) and les soon.

LES

ps excuse the sometimes wonky typing or changes in font – why doesn’t it do it when you write it? – pd is getting in the way more and more – yawn

97. Struggling

I am struggling,/ the past few months have been a whirlwind of medical changes/challenges, PD rubbish, Awareness stuff and day to day real life twaddle (yes I am three dimensional I don’t live in cyberspace). So a few bullet points to bring you up to date.

PD and Dystonia are now joined by Osteoarthritis (and the hip replacement last July), and now IBD (possibly Crohns). Flaming heck PD on its own is bad enough,. So had to stop one of PD drugs as it interferes with the steroids i am on for the Crohns. Five hospital stays since Feb, on second course of steroids. Stomach liners interfering with absorption of PD meds. Now gone gluten free … aaa

The wise-ish man and I have done some PD talks, and he has played his album and I’ve read my odes.

My Newspaper column is going to every four weeks.. Which means I can relax a bit. =thankfully I don’t get a new symptom every week so quite challenging To keep the column fresh. It is it is such a brilliant opportunity that I don’t want to give it up. I do enjoy it, so once a month should be okay.

The play I wrote with the wise-ish man is still being viewed on the Parkinality You Tube Channel – btw it won its heat and came runner up in the final of the playwright competition. So that was a lot of work. It was well received, and was followed by an interview with Parkinson’s Life magazine

The musical is almost finalised – meeting this week to discuss taking that forward.

And last but by no means least my Parkinality Poetry Book is out and hopefully selling. I am doing all I can to promote it. Including a launch party and book signings. I am planning to raise money for charities through additional addons such as a raffle at the launch day, where the raffle raised money for PD UK and Cure Parkinson’s Trust.

I very excitingly have signage for my book POS (thats point of sale, not pirouetting ornithological salamanders).

Okay dyskinesia kicking off something chronic so must dash back to my 3D life

96. Indelazisive

Okay if you want to skip my waffle about being indecisively lazy … then don’t waste your time reading this ridiculous post … pop along to the Parkinality Poet section for news as to why this blog has been rather sparse recently …

Of course if you have more time than sense read on (don’t say I didn’t warn you)

Complete twaddle alert ….

Apologies … another new word …. Indelazcisive

INDE laz(y) CISIVE

I am being indecisively lazy – so not lazy par ce (no idea if that is spelt correctly or the correct usage), more indecisive.

Just counted up and 1 2 3 4 5 6 7 8 9 10 11 yes that is eleven unfinished draft blog posts hiding ‘behind the wobbly stage sets’- maybe I should just post them as they are – maybe I will maybe I won’t … ooh adding some excitement to this stale blog.

I am allowed to be harsh, my blogging has been lazy which means the blog is stale, like a ‘bread envelope’ (if I have to explain it it isn’t funny …so to the four people who don’t understand it …. actually it’s so obvious I don’t feel I need to ….)

Oh just go and look at the Parkinality Poet section to find out what is going on …. go on shoo shoo …