Parkinality

Parkinality is a predominantly positive website about living with early onset Parkinson’s, I was diagnosed at 44.

Parkinality : Pa:kin-al-i-tee … Parkin(son’s) Person (ality)

Beginning with a made up word may not be the most straightforward start, but bear with me.  As this is not a ‘Who Dunnit’, I don’t expect you to read for 900 pages trying to unravel the purpose of my ramblings.  So I’d better start with an explanation.

Parkinality (pa:kin-al-i-tee)

  • Parkin(son’s) (person)ality  : two words ‘blended’ together. 
  • Parkinson’s + Personality = although I am not just Parkinson’s it has unavoidably become part of me.
  • I was diagnosed with early onset Parkinson’s Disease at 44
  • I try to be positive and pro-active celebrating what I can do.
  • *predominantly : I am predominantly positive, however I make no apologies for being honest when things are bad.

Why am I putting my head above the parapet and writing :

  • To raise awareness about early onset Parkinson’s
  • To let others living with Parkinson’s know they are not alone, dealing with seemingly random symptoms.  It can be very isolating.
  • Sharing tips and coping strategies.
  • To keep a journal, as I believe it will help me (and as soon as it doesn’t I will stop).

Is it going to be sad?

  • No (well mostly no, after all it is a (currently) incurable degenerative neurological disease.

If this is your first visit then to avoid bafflement, may I be so bold as to suggest that you read the sections entitled, diagnosis day, disclaimer, support, what is PD, congratulations.

The most up to date posts can be found under the individual titles of Blog, Newspaper, and Poetry.  There is also an archive section so you can go back in time.

So if you are on a mobile, click on the menu list, usually three lines at the top of the page by the heading.  Or on a pc then the menu should be on the left.

Small print :

This is a personal website about living with early onset Parkinson’s from my perspective.  Everyone experiences symptoms/progression differently.  There is no right or wrong way to deal with this.  I am (obviously) not medically trained, so please don’t change any medications, or try anything new, without first speaking to a medical professional.

I cannot be responsible for any content on any links to other sites from this website, it is down to you to exercise caution.  I repeat I cannot be held responsible for any links to other sites being accurate, nor the information given.

As you read my facebook page, blog and other writing, feel free to think (delete as applicable) ‘oh that’s interesting/boring/irrelevant/just damn odd/ worthless/splendid/ amazing/funny’ … but do not act on it.

This site is constantly under construction, we always have our ‘decorating trousers’ on and we (the royal ‘we’ – in this case the ‘we’ is the extremely patient tech guy), are gradually updating the site…. so please ‘bear with …’  

As you will see when the blog was started, if you go right back in time to January 2017, I was posting regularly as that was my only project.  However life and Parkinson’s have got in the way (and not always in a good way).  I have now started several other projects with the aim of raising awareness.  

My newspaper column with the Bishop’s Stortford Independent Newspaper is now monthly.  I have written over forty columns so far and if you would like to read them you will need to subscribe to their newspaper page.

The Parkinality You Tube Channel contains the play about PD which I co-wrote and some other bits and bobs.

I have also included an ‘interviews and media’ section ooh luvvies.   (although as always be cautious when clicking links as I am not responsible for any of the content on the link or if the link is broken, has changed or it takes you somewhere else).

And last, but not least, my book The Parkinality Poetry book which is available on line and to order in book stores.  It is not all about Parkinson’s so don’t buy it if you want fifty four poems about PD.  It is subtle and entertaining, with some subtle PD references.  30% of the royalties earned go to The Cure Parkinson’s Trust.

Smashing(ish)