Close to Parkinson’s: Hurting

MUSIC: DAVID SANGSTER

Our closest have lives,

To live and enjoy,

Delayed redundancy

In our sick bed-employ:

Carers, co-sufferers,

Career un-chosen,

Tend disconnected,

The mumblers, and frozen.

Altered, unfair,

Re-written contracts;

No wedded-bliss,

When ill cannot act.

Wives, husbands,

Family, relatives old,

Air-brushed awareness,

As PD takes hold:

My prop, my chained-helper,

Engaged, far too cheap:

Her offset disbursement,

Too tired to weep.

When care is passed on,

With my atheist-prayer,

I ask her forgiveness,

For our contract, unfair.

The best laid plans.

A quick one from me:

Today was the Cure Parkinson’s Trust research update – an event definitely defined by determination, positivity and HOPE!!

Tom Isaacs and Jon Stamford were on good form, as were the other speakers.

The main topic of discussion for today’s meeting was that of Stem Cells and the exciting progress being made in this. Period.

The atmosphere was relaxed, engaging and friendly – not too big, not too small. Jon adding his own unique spin on how the population of people with Parkinson’s can and should navigate the Internet safely, in terms of ‘google-ing’ for answers and ‘better treatments’.

Tom was typically modest about his achievements (did you know he’s met the Pope!) and the work they do at the Cure Parkinson’s Trust; describing the importance and greater need for patient involvement and the HOPE he has that the progress being made will see better results for all of us living with the disease. Tom’s mindset and his natural ability to engage audiences and make them laugh is a real therapy in itself.

I truly hope that I will see this disease I’ve lived with for at least 5 years ‘reversed, slowed or maybe even stopped’ in its tracks by Stem Cells or whatever else is coming through – the positives to take away from today are that progress IS being made and that there is lots going on behind the scenes.


Sadly, for me, I became unwell in the event and had to leave quite unexpectedly. I was so happy to have met with Phil Bungay and his lovely wife, Tomas and his partner, and for the first time – Alison who was diagnosed last year and is finding her way in as positive a way she can by engaging with others via the Young Parkinson’s Network. Also, to briefly meet Simon and Michael F – so sorry I didn’t get the chance to speak to you more than I did.

The journey home was long, with delays on the line, and plagued by a real sense of vulnerability by the fact that I was miles away from Manchester, severely ‘off’ due to sickness and not being able to medicate orally – thinking about it now; I should have borrowed one of Tom’s (G) ‘Wackaday Plasters’ (DA patch).

Anyway, I digress. I’m safely home now thanks to the very kind help of the customer assistant at Euston station who personally escorted me to my seat – bypassing the rush and the hazardous nature of a crowded platform when ‘off’ in rush hour – many thanks kind sir! (So glad I was brave enough to say why I needed help and that you believed me!)

I’m off to bed.

More tomorrow about what’s planned for Parkinson’s Awareness week from the Young Parkinson’s Network.
Best,

Real.

“So.. It’s gone 10pm, I’m really slow but I just have to write down what’s in my head..(waits around 40 minutes for the Sinemet to loosen fingers up enough to reliably put down, in the blank space below, a description of the day)

That’s better.. here I go again..

..Parkinson’s requires such patience as it progresses, you have no choice but to learn to respect it, work with it and basically develop a ‘new self’.”

Before I begin describing the lovely afternoon spent today (Thursday) with my good friend Martin, I will start with yesterday (Wednesday).

As I was having lunch with my young daughter, my phone vibrated in my pocket. It was a text message from a person I had only spoken to via Twitter – Gaynor.

Like me, Gaynor has PD. We agreed to speak when I got home on video messenger – a great tool to break down barriers and to speak ‘face to face’.

Gaynor is the ‘brains’ behind Spotlight YOPD, a new charity which hopes to connect and offer support to the ‘younger’ population of people living with Parkinson’s.

I first heard of ‘Spotlight‘ back in early 2015, when they were setting out their plans for charity status and what they hoped to achieve, including the epic journey across the Pacific with Darren Taylor and the physically unstoppable  Alex Flynn this year. The whole bunch are so optimistic and hopeful about the future for Parkinson’s treatments, the activities people with PD can get involved in and can also do for themselves. They are also realistic about the challenges PD throws up, having real first hand experience. Like myself, Martin and a number of others in the #youngpdnetwork who have continued to promote what it stands for in terms of Positivity, Engagement and Awareness, Gaynor and the guys adopt a similar approach to the disease.

Since that time I have been busy on my own journey, in coming to terms with ‘it’ and in continuing to learn to adapt to its increasingly unpredictable nature. It is such a game of utter frustration sitting at your desk (at work) just willing and waiting for something to ‘click’ so you can get on.. be productive.. not to mention the look of sadness and worry on Janes face when she sees me struggling to open the milk in the morning for the kids cereal or to see me sat at the table, after a days work,  trying to keep still and focus – just to I can eat when the dyskinesia shows it ugly face (don’t ask about restaurants).

Am I raising awareness or moaning? Both.. I feel. It’s good to share your problems, to have a rant and a moan, as much as it is to raise awareness positively and to show what it feels and looks like to live with a chronic condition like this at a ‘young age’.

As I meet more and more people on my journey, I am becoming increasingly aware of the fact that in putting myself ‘out there’ carries with it a sense of responsibility to give out a measured but still real perspective of living with PD. Some of the people I have had the pleasure of speaking to the past year might have only been diagnosed in the past 12 months. Now I’m not saying I should be overly positive or try to paint over the cracks, I am fully respective of the fact that PD is as individual to the person it chooses; as is the personality and mindset of the unlucky chosen recipient. However, it is my responsibility to be real about it but also to be positive also – in terms of balance and to promote the real progress being made in science and research for ‘it’.

Which brings me to Martin, diagnosed at 32 (18 months ago) who I had the pleasure of meeting for ‘real’ today in Lancaster.


We discussed a lot about Parkinson’s, its affect on our physical being and on our ‘nearest and dearest’. It was good to talk about both, compare notes, to have a moan but also a good chuckle (in equal measure) over a pint or two by a sun lit canal in Lancaster. As Martin rightly points out; just two normal blokes having a beer on our ‘week off work’. We should have met long ago, but we connected today in many ways, Parkinson’s aside.

Sadly, the chances of us ever meeting if not for PD are probably zero. Simple geography can answer that. But we did meet and it was really great.

See.. there’s something positive in everything.. you just need to look again.

Thanks Martin, for traveling the distance to meet me and for your kind words in your blog post here.

As I read your blog and come to the end of my post, a few songs pop into my head (as per usual with most things) so I thought I would share them here.

Before I do that, think about about what we agreed (our pact, if you like).

To be thankful for what we have achieved, earned and most important; been gifted in our ‘better halves’ and the amazing things which grow from this lifelong partnership. ‘Normal’ may seem more difficult to experience, as we once did before, but what we still have and the things we have yet to do with our altered physical condition is still exciting and hopeful. I am truly optimistic about my future and look forward to seeing what’s next.. I hope you are too.

David