Small in number, working together.

It’s 4:45am on May 31st 2017 and the sun is promising to shine as I sneak a peak outside, quietly drawing back the curtain enough so that I can see the two yellow sinemet and larger entacapone tablet in my shakey right hand — cusped like I am ready to roll a dice on the unluckiest of craps table, so as to not lose them under the most awkward of nooks or crannies- pretty much the worst case scenario at this time of the day.

Unfortunately, it is then that I realise that I don’t have my Dopamine Agonist tablets (left in the kitchen), which I take just in the morning to basically ‘prop-up’ my teeny yellow Sinemet.

So, with the subletley of the ‘BFG’ I head downstairs. Almost immediately, it feels like the Krypton Factor (over the safety gate at the top of the stairs, avoiding the small window holding a nice vase and a picture in a special frame that we (Daddy +2) bought Mummy for mothers day. Heading down the stairs, I reach my next challenge; the always painfully delicate job of punching in the wrong digits on the house alarm with my double-tapping index finger, as I stand there leaning in to support my unsteady gait, I find myself pleading with my hands to give me a break for just a second.. as I punch in the correct 4-digit code. Phew!

The alarm, like many other things, was once something I used to execute with ease, precision and with such little thought.. you know.. it’s one of the things which you question, doubt you actually did, as you left the house not an hour or so ago as you now sit at your desk at work.

Despite all of this, I genuinely believe that today is going to be a good day, despite my physical condition, I am convinced.

Now, if you are reading this and thinking to yourself; ‘How on earth can David think it’s going to be a good day?..he can’t even fasten his ‘parky-pants’ properly! He is being a bit unralistic!’

Well, reader, let me offer you two options at this point:

i) Skip to the next Blog entry by clicking here (I won’t be offended).

ii) Read on and find out what happened next.

After another hit of the meds at 5.45am, after waiting the typical hour it usually takes for my morning meds to take affect, I wait another 30 minutes until I finally get moving. The problem is that I now only have about 15 minutes left to get myself dressed and in the car to race across Bolton towards the next town of Bury, in Greater Manchester, where my friend and fellow ‘pwp’ Zoe is waiting.

The plan: 7:55am train from Manchester Picadilly to London Euston.

Some time later, after a kind drop-off at the station entrance from her husband, Chris, Zoe and I head up the escalator towards the main platforms where we have about half an hour to collect our tickets from the self-service machine (yep, more digits! ha! ). Apologies to the sharply dressed (‘dopamine-rich’) man who was clearly in a hurry, held-up by us.

Finally aboard, we catch up on our social media, drink hot chocolate and catch our breath. It was nice to spend some time with Zoe and catch up properly on the two hour train journey, as well as sharing the usual moans and groans, symptom comparisons and hopes for the future.

“Expected time of arrival 10:49am” was the message on my trusty smartphone.. twenty minutes later we arrive at our destination.

Having pretty much given up on using a pen since my diagnosis, its not easy when I am required to use a pen to sign for prescriptions or deliveries etc. When I visit organisations (of any kind) and at which you are asked to sign-in; printing your name, time of entry etc is always a little entertaining as I can clearly see how many other pwp’s have arrived before me — here today at Parkinson’s UK.. it’s not too difficult to spot 😊 (Disclaimer: I mean no offence. Fact: humour is essential if you are to live with Parkinson’s).

We arrive just in time, both recognising the many ‘famous faces’ we are so used to seeing on Twitter and Facebook (many of us having already met once or twice before).

The purpose of the day is to work with Parkinson’s UK as they seek to respond to the survey they published last year and also to gain a better understanding of our needs, for feedback about what ‘unmet needs’ exist and for open discussion and constructieve feedback as to how to build-in additional, tailored, resources for us ‘younger’ pwp’s on the website. Let’s just say we discussed many, many areas which, we feel as patients, need looking at and also any other concerns we may have had. Overall, it was a very productive and worthwhile day!

Later, as I board the train to Manchster, and despite the tiredness, I am still feeling mentally energised and motivated after what was such a special day. Having attended the World Parkinson’s Congress last year, and the positive energy (+dopamine!) it generated amongst its attendees, in some ways it was almost certainly replicated in those hours we all spent together today.

It always amazes me how being together with other pwp breaks down so many barriers and opens up so much discussion. Some people said that they had never met a person as ‘young’ as me, for example. It was such a great day and the energetic discussion continued on for a couple of hours in the local bar!

So, let’s keep open this line of communication, input and positive intervention to ensure that those who may be feeling a bit flat or tired after such a day that we sort out the best way to work together to generate more of the same virtually — in a shared space.

Let us not forget to use our voice, as patients. Together, as a community, we can help ourselves by engaging and taking an active part in something that really makes such a difference. Together we can shape change and today is just the start.

This blog post is dedicated to the memory of Tom Isaacs. A true advocate, an inspiration to so many and who's influence will live on.

“You and your colleagues are part of a group that is making a difference in the world of Parkinson’s. Your insight, passion, urgency, focus, fundraising, empathy and participation are having a direct influence on the future treatment and care of people with Parkinson’s.” (Tom Isaacs: The road to fulfilment — from diagnosis to advocacy.)

David Sangster