My Positive Parkinality
27 FOLLOWERS
A predominantly positive personal blog about living with early onset Parkinson's.
My Positive Parkinality
7M ago
So as not to confuse people as I would like people to think ‘oooh I’ll come along’ rather than ‘what the thing is she on about’. So here is a poster with all the details, hope to see you there. Tickets available in advance for only £10 on the link on the poster from We got tickets.
The post 146. Party Time appeared first on Parkinality ..read more
My Positive Parkinality
8M ago
Column I wrote after winning the award. Originally appeared in local paper, Bishop’s Stortford Independent.
I’d be exaggerating if I said I’d lost them all as I did manage the odd ‘crikey’ and ‘thank you’. However, even now, back at home, I am still lost for words. So, what on earth happened to me in a marquee in January, to incite this reaction?
Warning … I am about to do something very un-British and blow my own trumpet
Drum roll please; I won the ‘Person of Courage’ award on Friday 26 January at the 2024 Indie Awards evening .
To see it written down is a shock, but to rewatch it ..read more
My Positive Parkinality
10M ago
I am not going to apologise, I’ve been busy.
Sorry not a very polite start, but it is the truth I have.
I won’t bore you with the nitty gritty. I will paraphrase.
Since the operation in June 2022 I kept feeling, what I referred to as, ‘my pipes moving up in my head’. Slightly confusing for the medical professionals. I am not a trained wordsmith or orator so this was the best description I could muster. It happened when I laid down.
Then I got an infection in the right hand scar on my head which involved 6 weeks of antibiotics and more brain surgery to clean out the infection.
Then finally afte ..read more
My Positive Parkinality
2y ago
So here I am a hybrid human … this is not how it should be. I am quite down atm. Infection in my bonce, emergency operation 6 weeks of antibiotics, which are interfering with my PD medication. But at least i have. Hope …
Cope
Wondering
Waiting to see
How you will cope
Without me
Without me you struggle
Without me you fear
The future unknown
You listen but don’t hear
You look but don’t see
You touch but don’t feel
Without me
Life doesn’t feel real
Taken for granted
Overlooked ignored
Without me
Life is a void
You think I’ve gone
Left for good
I am still here
Simply take a look ..read more
My Positive Parkinality
2y ago
sorry with knobs on. You don’t even get a chocolate hob nob for being a long standing reader of la blog. I don’t even tell you when I’ve had the operation. Well I have and here are the newspaper columns to elaborate on the goings on …
62. Diagnosis is like a concrete boulder being slung into a peaceful stream
Reassuringly, I could still wiggle my nose and was still 5’8″ tall the day after being diagnosed with Parkinson’s Disease (PD). My PD nurse was trying to be positive by saying that nothing changed when I was diagnosed. After months of medical appointments, with what see ..read more
My Positive Parkinality
2y ago
This is a special post for you patient Parkinality subscribers. I thought you should be the third to know (after the Surgeon and me)
So near …
For me May 2022 turned into an A to Y of emotions (no zebras yet). From agitated to anxious, hovering over hysterical, through to yikes. I was finally given a date for my brain operation. Deep Brain Stimulation (DBS); electrodes implanted into my brain during a seven hour operation. It is not a cure and Parkinson’s Disease (PD) will continue to degenerate, but one of the things it should do is allow me to reduce my medicat ..read more
My Positive Parkinality
3y ago
Between you, me and the three people who have noticed…. I haven’t been to a support group, written a newspaper column, posted on Parkinality facebook or written a blog for differing lengths of time
Even I, self proclaimed positivity person, has been stretched, resulting in a finger stinging twang.
Despite my best attempts at a jaunty smile and heel click, I can’t dress it up – I need that brain operation.
I am still fortunate that I do get flashes of normality, very occasionally those flashes can last a couple of hours. But generally walking, talking and dancing are disapp ..read more
My Positive Parkinality
3y ago
I have been away … not literally obvs …pandemic paranoia and all that. But I have been neglecting the ole blogerooni.
I have been busy thinking … lots on my mind.
Parkinson’s has been continuing ‘yawn’ … continuing to table* up my life and to be honest it is dull. Deterioration, dyskinesia, dystonia, Doris the duck … dull dull dull. Sorry sorry sorry. There is only a certain amount of deterioration one can write about and you read. So, in case you were concerned, I am still deteriorating. No new news, no nothing.
Until now …. trumperty trumperty trump – thank you Nellie
*to maintain this blogs ..read more
My Positive Parkinality
3y ago
Dance and donate to Cure Parkinson’s with Souled Out Summer.
On Saturday 27 March at 4.45pm The Intermission with Andy and Julie will be ‘on virtual tour’, opening Souled out Summer on Facebook live.
Tune in via the Facebook page at 4.45pm to hear a bit of banter and some Parkinality Poetry. Then from 5pm the DJs from Souled Out Summer will be unleashed, spinning vintage vinyl, from the 50s, 60s, 70s.
No need to book a taxi or babysitter – this is a virtual event and a fundraiser for Cure Parkinson’s. So why don’t you click the just giving link and donate whilst you dance in ..read more
My Positive Parkinality
3y ago
Pull up a stool (not that kind, that kind)
Why did I ignore my body.? Why did I ignore the whispering? Why do flamingos bend their knees round the wrong way?
Welcome to the new zone … The Crohns zone. It has demanded it’s own area, it can no longer be ignored.
My body started proding me properly in February 2019. It had been whispering for a while. Silent farts, noisey wind reflux, bloating, side pain, weight, loss and to be Frank I didn’t actually realise how constipated I was until I wasn’t.
It was in February 2019 when on holiday that I suddenly realised I hadn’t stooled for around two week ..read more