“Yes, you’ve got Parkinson’s”

Like many other people with a significant diagnosis I know exactly when I was diagnosed with Parkinson’s - July 16 2019. I didn’t know quite what it would mean, but I did know that it was a life-changing moment!  And like many others with Parkinson’s that wasn’t the first step on the road. So when …

“Aaaaaaaaaaaaaaaaaaaa”

How long can you keep that sound going? How loud can you make it? What’s it like doing this in a zoom room, with three people watching and listening? I found out recently when my long-awaited referral to a Speech and Language Therapist (SLT) came through, out of the blue, when I’d almost forgotten about …

“If you build it they will come”

I’m a bit of a procrastinator. It can take me a very long time to get moving on an idea or project. On the plus side this means that I don’t spend huge amounts of money that I don’t have, or do things impulsively that I haven’t thought through. But sometimes you just have to …

ParkyBoy goes on holiday

I lost my phone on arrival at Leeds train station. At first sight it may look unfair to blame ParkyBoy, but I interrogated him and he admitted to playing a small, but decisive role in the incident. But first some context.  Kerry and I had to be at Leeds train station at 2am, to get …

Still on the left wing

I thought my footballing non-career was over 12 years ago. I’d hung up my (astro) boots, but didn’t think I’d actually gone as far as to give them away. I found them in the attic, in a pile of stuff I was unlikely to use again. Yesterday I put them on - they still fit!  …

Right to work?

“18 hours a week”: after a long period of uncertainty I have just been offered an additional year in my job, at slightly reduced hours. I feel great relief. Relief at having an adequate, ongoing source of income, for sure. But it’s not just about the money. Is it ever really just about the money? …

No need to talk about it, we understand

In a previous job I proposed, at a staff meeting, that we ensure our services were accessible to older LGBT+ people. A colleague said: “I don’t have a problem about it, but I don’t understand why they want to meet separately.” I’d been here before and was able to respond strongly, hopefully without belittling her. …

ParkyBoy: mischievous, demanding, and humanising

In my work I’ve been heavily involved in a campaign against ageism. In March 2020, as the danger to older people posed by Covid-19 became clear, we saw an article: ‘Is coronavirus ageist?’. My colleague said: ‘No. Of course it’s not… it’s a virus!’ So true, of course. But what would ParkyBoy say about that? …

Playing the passive patient

In August I met my newrologist then began, shortly after, to take Parkinson’s medication (Rasagiline) for the first time. I was optimistic that it was the beginning of a long, positive relationship with both. The consultant would listen, advise and work with me, while the drug would keep ParkyBoy stable. What could possibly go wrong? …

Changing the climate

World leaders are meeting in Glasgow for the 2021 United Nations Climate Change Conference (COP26). After decades of increasingly obvious symptoms, and years of denial, can they finally agree on a diagnosis, leading to an effective course of treatment, and save the patient?... So what could climate change possibly have in common with Parkinson’s Disease? …

Mourne the mountains?

I’m just back from Northern Ireland, where my partner Kerry grew up. As well as spending time with assorted family and friends, we intended to have a real holiday. And it would be an opportunity for me to see how much Parkinson’s is changing my life, and whether my new medication is having any effect. …