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,