Living with Young Onset Parkinson’s Disease (YOPD), a predominantly positive website. Why? Oh PD.
Category: THE BLOG
My Positive Parkinality is a predominantly positive personal blog about living with Young Onset Parkinson’s Disease (YOPD), diagnosed at 44. The most recent blog posts are below. The archived section the front page of the website shows all of the posts since time began, well January 2017. The blog is the personal ramblings and opinions of a middle aged woman who is not medically trained, so please please don’t act on anything I say/write : please speak to a medical professional.
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.
(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.
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 here is the marketing blurb …l
The Parkinality Poet is back with a new book; ‘Another Book of Parkinality Poetry’ supporting The Cure Parkinson’s Trust during 2020
Welcome to Another Book of Parkinality Poetry By The Parkinality Poet
An entertaining book of poetry about interesting people and their relationships. A collection framed, but not dominated, by Young Onset Parkinson’s Disease. Written in the hope that it creates greater understanding about this disease.
In 2012 The Parkinality Poet was diagnosed, aged 44, with Young Onset Parkinson’s Disease (YOPD). Today, seven years after the diagnosis, she tries to remain positive and concentrate on what can be achieved rather than dwelling on what cannot.
In January 2017 she invented a new word Parkinality, Parkin(son’s) & (person)ality, and started a website about living with YOPD (www.parkinality.co.uk) to raise awareness, create understanding, but primarily to highlight the urgent need for a cure.
This is The Parkinality Poet’s second book of poetry. Another Book of Parkinality Poetry takes five fictional characters and through a series of poems explores ordinary family life, while at the same time, woven within the pages, is the spectre of Parkinson’s Disease.
Simple poems, simply written; often poignant and sometimes surprising, some poems will raise a smile. As with her earlier book The Parkinality Poetry Book (published July 2019) the poems are entertaining, interesting and written to appeal beyond the Parkinson’s community.
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.
Just imagine the luxury of being able to pick up a pen whenever you wanted and just write …
In the early days of this blog I was posting at least once if not twice a week. Long entertaining essays about the hilarious and interesting, and sometimes poignant, exploits of ‘me’ just diagnosed. Then, although I didn’t realise it at the time, I was positively spoilt by being able to type or write whenever inspiration hit, or at the very least whilst a hilarious anecdote about ‘not being able to walk’ was fresh in my mind.
Today, over seven years diagnosed, and I don’t have that ‘normality’. I took for granted being able to willie nillie, casually, pick up a pen whenever I wanted and to type accurately.
My writing is completely Crubbish. I found an old diary whilst sorting through some stuff and was startled by my writing … Positively ginormous rounded masshiv writing. Today it looks less like writing, more like the mark left by a one legged gnat trying to crochet after falling in a vat of tar.
I can ‘type’ when switched off, if typing means anything from one finger to one’s whole head laying across the keyboard. So accurate typing is key, we can all flap our hands about and after a zillion attempts get the works of Shakespeare, or is that just me?
Today pd is trying to take control of my communication skills more and more. I say trying …. I am doing everything I can to try and lead pd up a dodgy cul de sac to distract him whilst I whip out an odd ode or newspaper column or brand-new blog, or even just doodle on the table cloth.
Scarey thing is my writing is also getting really twaddley even when PD is not telling me it is kicking off … ie I think I am switched on – walking and dexterity good, but something is going on as my pen control is crubbish.
Typing is so inaccurate it is a mass of red and blue underscores.
Siri or dictating software only seems to pick up my sweating . I thought I’d leave that hilarious 1am spell check error – my tremoring mouse control picking out the wrong word from the list of suggestions.
Talking of sweating … hot and cold flushes – menopause or PD, or a special bargain combo offer of two for the price of one, ie both. Yes, PD affects temperature control as well … freezing to sweating in a glorious second. I am a joy to be around sometimes (I heard that).
And if you pick a day with a super bonanza offer of ‘add a twaddle for free’ day … then you can add losing my sense of smell into the mix. I generally go about my life innocently devoid of any sense of smell. Happily unaware that I can’t smell. I say ‘happily’ as what you don’t know you’ve lost you can’t miss.
However, every so often my sense of smell randomly returns – no known rhyme or reason for this … just another of PD’s party games. So, I’ll be happily whistling a happy tune, and suddenly be stopped in my tracks muttering, ‘forsooth what, pray tell, is that delicate scent’? A person, who will remain anonymous, did suggest I carry a ‘smell o machine’ which can tell if I smell without me having to be able to smell. So it glows green for ‘yep you smell of soapy goodness’, to a slightly off mauve light for ‘oooh you smell of beer and skittles’, to a super loud siren and flashing beige light for ‘flaming heck here’s a soap voucher’.
Permission to go for a ‘comfort break’ (a phrase which is misleading … is that a midcycle washing machine break) This is a long old ode. My good typing is your long reading.
Crickey what a multi-faceted day. Now first of all let me say that I realise everyone’s days are varied and multi-faceted, schedules being changed by things out of our control; trains being late, losing our keys, the supermarket being out of Outer Mongolian Lesser Spotted Vegan Mince substitute.
So, although I didn’t lose my keys (I have attached them to my bag with a yellow bungee cord) my day went a bit haywire.
So, first of all up at 5am. Slept well, only up twice in the night, which is amazing. But that meant I hadn’t taken all my usual night time drugs. So consequently, undermedicated to start with … dystonia hit first thing, both feet in complete spasm. Not many tricks to get out of dystonia. But rather than sitting and waiting patiently watching the test card (ask an over 50), I dragged myself around the house, literally on the sides of my feet, toes twisting and clenching uncontrollably, and my face distorting with dystonia as well, which, to be honest, I can’t put a positive spin on, as it is decidedly horrendous.
Take main meds and they kick in, but so does my ‘compulsive computer browsing’. A couple of hours of literally unstoppable browsing of guess what …. Holidays, designer gowns, nope walking sticks. Great, PD is even controlling my shopping – but no purchases made. Now just let me clarify when I say ‘browsing’ I don’t mean looking at three different websites to cross reference. I mean looking at twenty different websites a hundred times each, looking at the same thing and just thinking ‘yep that teal polka dot walking stick is the same price on every website in the known world’ … but just to triple check I’ll search all the sites again.
Finally, my meds were working – walked into town … hurrah
Meeting a friend for lunch …. Then because I was tip top, and to be honest a little over the tip top. I thought I’d have a shopping browse.
Big mistake, ‘the compulsive dopamine creating thrill of the mega end of sale knock down prices browsing bug’ kicked in big time. I was swishing and enjoying the shopping rather too much.
So for those of a delicate disposition I won’t describe my shopping fest in great detail. Suffice to say, it started with a sale cardi for £4 whoop and ended with a charity shop designer dress for £10. We will gloss over the bargain dress, gloves mmmmmm and mmmm ………
And then I was late for lunch and completely over the top with dyskinesia – the continual moving …. So woke frozen, then obsessed with computer, then dopamine hit from the mad shopping and then dyskenesic over lunch
This is the first conference with an emphasis on those diagnosed with Young Onset Parkinson’s Disease (YOPD). Young Onset ‘officially’ refers to those diagnosed before fifty. The emphasis might be on young onset, but everyone is welcome to attend.You won’t be asked for ID to prove your age in a reverse ‘buying a pint scenario’.
So why the need for a conference with the emphasis on those diagnosed at a younger age?
The conference aims to discuss the worries, concerns and challenges faced (in the main) when people are diagnosed at a younger age and Parkinson’s is thrown into their lives. It is such a complex misunderstood unpredictable disease difficult at every age. But there are differences.
The cut off age could be continually discussed. It is not a debate about whether people are 90 but young at heart, or 25 and old before their time. It is not about hobbies or fashion – garage music, sherbet fountains, comfy cardis, and slippers can be enjoyed at all ages.
However, from a practical, financial, social and medical point of view there are usually life differences between a 35 year old and a 70 year old – although please read everything with a sub note of: there are always exceptions to the rules and exceptions to the exceptions.
From a medical point of view those diagnosed at a younger age, are likely to be living with the disease for longer, giving symptoms more time to develop/worsen as the brain cells degenerate. They are also likely to suffer the side effects from long term use of the PD medication, and will require more advanced treatments. Although disease progression varies, so there will be exceptions.
Most people start on the property or career ladder and have children at a younger age. Obviously there are exceptions to this rule. However it is more likely to be a 35 year old, rather than 70 year old who will be changing nappies, attending parents evenings, attempting the parents race at sports day, ironing shirts, earning enough to support a growing family, or holding their own in an all day brain storm with the boss when at times they can’t hold a pen.
Also, Keeping up friendships and relationships with peers who are still living their lives at warp speed. Whilst living with a condition which is trying to stop us at every turn and disrupt our lives,
Coping with a disease so complicated, unpredictable and misunderstood is difficult at every age.
The conference will be an opportunity to meet up with old and new friends, many of whom, up until now, we have only met virtually. Hopefully everyones profile picture is up to date.
It will also be an opportunity to meet the movers and shakers (sorry) who are researching to advance a cure, and those with the information and advice to keep us living well and managing the condition until that day comes.
So, I look forward to an interesting and informative weekend, interspersed with some social chit chat and cake. Pop over to the website for more info
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.
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
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.
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)
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.
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.
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).
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**