Inspired to write something about our very enjoyable work together, this is ‘Gifted’. 
For Mike Bell
Two blokes ‘gifted’ pd, at their ‘best’, still planing ahead..


An unlikely box to receive, as was the chance that we would ever meet – if it wasn’t for this deplorable disease. 
Born decades apart, a time when the mini skirt was ‘in’ or when the Deloroan was actually a ‘thing’.
We both know what this PD might bring..
Slowly, peeling back the layers of protective matter (in our brains), sneakily without us seeing.
But our creative spirit, born within, can’t be stripped, scrubbed or faded out like the chalked pavement scribble we once created as kids.
It’s our therapy for free. A welcome distraction from the slowness PD brings. 
Music, words, piano and verse..

Like the tiny little parkie pill, a moment of bliss, from this Parkinsons, my release.

We are Parkinson’s Creative Society.

Close to Parkinson’s: Hurting


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.


“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.


‘Just purse your lips and whistle, thats the thing.’

So that was London. A month earlier than planned but such a great amount of progress made.

FullSizeRender-1 4

Why did I visit? What’s the point of all this? What am I trying to achieve?

Well, like any person setting out to do something new, out of their comfort zone or unfamilar – I had the usual doubts, second thoughts and basically worried that I had set myself up to fail or look silly. Luckily, I didn’t, and the next leg will take place in early February.

Several months ago I started the ‘Parkinsons Map’ – one of many ideas that tend to materialise, once in a while, managing to escape the confines of my ‘leaky brain’. At the time the map seemed like a good idea, even though I wasn’t fully aware of what its potentaial benefits might have become. Even though ‘#1in20Parkinsons’ and the ‘#youngpdnetwork’ are quite new and still very much developing; the map and what it stands for shows that we (working age people) are very much active, as patients.

Now I know what some people might say: “Parkinson’s for life, but it’s not terminal or it could have been much worse..”. I would agree that it could well be.. What strikes me the most about this often used comparison is why say it in the first place? Saying that its not that bad, means I will be somehow reassured. Or, rather, is it a tool used to avoid further discussion or to expose an understandable ignorance to the condition.

To help explain I quote Martin Taylor, dx barely into his thirties just over a year ago:

Dropping The P-Bomb, Location: Local Co-op

Martin: ‘Just the beer, orange juice and a lucky dip please mate’ takes wallet out dislodging 50p to the ground from jeans pocket
Cashier: ‘That’ll be £8 Mate’
Martin: Bends down very stiffly to pick up 50p
Cashier: ‘Are you in pain mate?’
Martin: ‘nah mate I’ve actually got Parkinsons’
Cashier: ‘oh have you? I’ve never liked the taste of Becks ‘
Martin: ‘Yeah it’s a bit of an acquired taste, catch you later ‘

I also recently read about the number of ‘decibels’ the Parkinson’s community arguably generates in blogs, social media etc – basically as a ‘patient voice’.

This got me thinking about my part in the collective ‘noise’ that is ‘Parkinson’s awareness’ and the reasons why I have invested so much of my time, effort and energy (1000kw of kinetic energy to be precise – generated solely by the ‘disco-needs-ya).

As I type this blog, on the train home from London, I am hitting all the right keys but not necessarily in the right order – attracting the odd look as I appear to be attempting to re-enact the opening credits of ‘Murder She Wrote’. Still (ha!), like with my approach towards the many other motor and non-motor symptoms with which I generally go to battle with at some point in the day (I don’t just shake!)- I just find a way to work with it – or accept that for maybe 30-45 minutes at unexpected periods I will just have to sit it out and wait for the wind to change, come around and fill my sails once more. For example, it is my bladder that usually has the final say on which seats I should best choose to sit on this weekends train journey, and it is my constant worry of rampant Dyskinesia and (equally) the then quite sudden ‘off’ periods (Bradykinesia) which often influence my thought process when heading to the shops or when to set off from work or indeed attempt to even get to work in good time!

What point am I trying to make? Well, its quite simple really. With every condition, chronic or otherwise, we as ‘patients’ can (to some degree) help ourselves and, I would hope, others (in the future or those who may be fearful of what could or would possibly happen if they were more open). So by being open about their ‘condition’ such as Parkinson’s Disease and, if they can and wish to, should find a way to channel the noise generated into some sort of tune that the general public might hear, entertain to and possibly experience that ‘momentary awareness’ that us ‘parkies’ hope the leading Parkinson’s organisations will capture or achieve across the country (and globally) one solitary week out of 52.

As my fingers are now begin to lose speed and dexterity, as my sinemet wears off, and as my train approaches Manchester, I shall leave you with one last point:

If one Parkinson’s organisation’s main focus is working towards a cure or better treatments, and another to providing patient support and services which are vital to patients (accessed at some point in their journey with this chronic disease) – then what’s our role as the patient?

Our role as the ‘patient’ is to engage with our Parkinson’s (while we physically CAN), to talk about it with other patients (to support and to educate) and most important: to shout, sing or just whistle your part in what is, and always will be, the collective noise that is raising awareness to make life easier for us all and to encourage more patients to join us.

“The next stop will be Manchester Piccadilly..”


The things I can’t do so well anymore and the things that I still can.. Post #1.


Evelyn and me, shortly after my diagnosis .


I am not going to start my first blogging experience off with a negative and go on about my diagnosis almost 2 years ago.. what would be the point? Yes, for someone worried about being diagnosed with pd tomorrow, next week or in the coming months – it would surely be useful. However, I am almost certain that if this is you.. that you are ‘that person’ reading this right now – that my words here will have little impact on what is to come (or not) for you personally and that you have most probably already have secretly ‘googled’ your symptoms (as I did many times) by now, you now know that the guy out of ‘Back to the Future’ didn’t just drive a DeLorean and also that the ‘greatest fighter of all time’ has a ‘bigger’ fight on his hands these days. You have (hopefully) also seen your doctor and then, eventually, a Neurologist. I did, amongst brain scans, blood tests, etc – you name it, I had the the test!! Or so I thought at the time. I felt like a true ‘patient’ and resigned to the likelihood that one of my dreaded fears (built up through ‘google-ing’ my developing symptoms weeks and months before) were about to become a reality. I was right.

Anyway.. I will come back to this point later. For myself and for my daughter who is too young even to read this – not to leave out my unborn child who arrives later this year – it is important that I document this ‘happening’ in my life. It was big at the time and it surely feels smaller now (in my head), but my body has changed and there are now things that I can’t do so well anymore but there are things that I can still do well.. yes my daughter will never see me play the piano like I could (mediocre at best) 5 years ago, but still – I can play something.

So I guess what I am trying to do here is record whats happened to me because of pd, share with others so that I might possibly help them deal with their diagnosis or after, and also to help me somehow.

Read on if you you’re interested to know more.. otherwise, thanks for visiting my blog!

Back soon.


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‘The Nocturnal musings of an impatient optimist.’

It’s barely after midnight, Jane is fast asleep and I find myself unable to wind down. To be honest, this is nothing new.. As you may know from personal experience; people with Parkinson’s tend to have problems sleeping. We are nocturnal creatures. Tonight is no different; physically I feel pretty bad. I’m struggling to find a comfortable position to just sit and when I try to move it feels like I simply cannot – at first thought.
You see, when you want to move (with Parkinson’s), if it be to just scratch your nose or even turn over in bed, people with Parkinson’s gradually lose the ability to initiate slight movements such as these. Words cannot describe how much of a physically and often emotionally challenging feat this is (particularly at a time like this – long after my medication has worn off, as I give my body and brain a welcome break from medication).
Basically, with Parkinson’s, the small things become big (to paraphrase Andy McDowell in New Zealand).

Sure, the medication gets me moving, it helps. In fact, when it works, I now (4 years in) actually shoot way past the line of ‘optimal movement’ to the point where I am dyskinetic. This too is challenging, but in a different way. Yes, I’m moving and yes it’s a torrid thing to experience day-to-day. It constantly challenges you to what feels like an arm-wrestling match with your own self! It draws unwanted attention and it’s very, very exhausting. But ‘still’ (no pun intended), I would choose to do the ‘disco-needs-ya’ dance (from the upcoming musical debut of ‘Three Parkies and a Piano’ directed by and starring Tom Isaacs) than sit still, inactive, feeling frustrated.

I often say that Parkinson’s is patience. Yet I often contradict myself because, really, I am an impatient patient! What I mean is this; when I tell people that I have Parkinson’s Disease 9/10 times I get a response most of my fellow ‘young’ Parkinsonians can relate to which consists of disbelief, fascination and often pity.

But tonight was different, as I attended a thanksgiving celebration in London organised by the Cure Parkinson’s Trust. Here, along with my wife Jane, I met some interesting and incredible people. Naturally, many who attended had Parkinson’s. It was a fantastic evening for so many reasons but the best thing was that, as Tom Isaacs made his speech unable to remain still with Dyskinesia yet as passionate and humorous as ever, I felt at ease in the knowledge that I wasn’t alone. For once, I wasn’t #1in20parkinsons, I was actually quite normal and accepted. Later, as I found myself ‘wearing off’ and the tremor in my right arm showing up to make it’s increasingly ‘flappy’ appearance, I just let it go safe in the knowledge that the people at the event were more or less familiar with the disease and all that it brings.

Now, for those who don’t know me, have never seen me or met me in person, you may be surprised to hear that I am barely halfway through my thirties, and as I write this blog post I turn 34 today .

Here I am: That’s me below, on the I meant the right.. Can’t you see? I’m the one with the Parkinson’s.

In fact, this is Dominic (on the right) who also has Parkinson’s. Just like me, diagnosed in his late twenties, Dominic has lived with the disease for at least a couple of years.

Apologies for the sarcasm, but I hope you get the point I am trying to make.

As I tweeted during the event:  

During the event, I didn’t just meet people with Parkinson’s. I met fundraisers, partners and carers, advocates and champions for the work the Cure Parkinson’s Trust do themselves but that also fund in the pursuit of better treatments and to find ways to slow, stop or reverse the disease.

It was an important event, in many ways. I met some interesting and remarkable people; all with the same hope and genuine optimism that progress is being made towards the Trusts ultimate goal of finding a cure.

I genuinely feel that right now, that if I was always destined to have Parkinson’s, then this is probably the ‘best’ time to have it.

Together we can beat this thing!

Anyway, I’m off to bed. I’ve got my birthday and a day in London with Jane to look forward to and also a quick visit to the Cure Parkinson’s Trust to see the progress they are making.

Until next time.. Keep on raising awareness of Parkinson’s Disease and the real people if affects- please.



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