Well, I would have to say that it has been an interesting old week, here at the International Headquarters of shaking not stirred.
On Monday, I was a delegate at a conference at the Future Inn (other hotels are available) in Plymouth, together with about 100 other people, to look at Parkinson’s research here in the Southwest. It was run by a group called ‘PENprig’ – the acronym for the Peninsular Parkinson’s Research Involvement Group. Go on, take a guess at what they do…
We had a day of talks from some very high-flying professionals, explaining – sometimes in quite some detail – their research into treatments and a possible cure for ‘P’, and how it is possible for People with Parkinson’s (PwP) to get involved in research without needing a PhD in neuroscience. In fact, the whole point of the day was to highlight that actually, the experts in Parkinson’s are those of us who live with it. If you are interested in getting involved in research, at any level, from answering surveys to testing new treatments, then have a look at their website: http://www.penprig.org.uk or if you live further away you can look at http://www.parkinsons.org.uk/takepartresearch – there are about 148,000 people with ‘P’ in the UK, but only about 3,500 belong to the Research Support Network. There is a big gap here! You don’t need any qualifications – if you have, or care for someone with Parkinson’s, then you are the expert. Come on, share your knowledge and experience. Let’s help to find the cure. Now.
Enough said!
Not only did I continue on my learning curve about P research on Monday, I caught up with some old friends and made a couple of new ones, too. So a good day all around.
Tuesday was a bit of a quiet one after the Monday, but on Tuesday afternoon (Nic sometimes finishes early on a Tuesday) we took advantage of the “Compare the market” comparison website “Meerkat” two-for-one promotion, and went to the cinema to watch the Downton Abbey film. I’m not a film critic, so go and see it for yourself, or rent it on Netflix (other entertainment websites are available). After the film we went to Chiquito’s (other Mexican restaurants…) and had a two-for-one meal as well! A whole afternoon at half price? -you can’t argue with that…
I’m not sure if this is the cast of Downton Abbey or Jacob Rees-Moggs Christmas card.
Wednesday saw me going to the Plymouth University, Peninsular Allied Health Care (PAHC – which I keep getting confused with PAFC) centre, as a member of their Service Users and Carers Group. This is yet another of my ‘busy-body’ roles, this one being providing a patients perspective to the curriculum for the students studying Paramedicine, Physiotherapy, Occupational Therapy and Optometry at the aforementioned PAHC. Some of the group, including yours truly, also give talks to the students about living with long term conditions. I have mentioned this before – do try to keep up…
I thought the building was a bit large for our meeting…
Wednesday’s meeting at PAHC was looking at the pre- and post- placement tutorials for the MSc Healthcare students. Yes, me with my 4 ‘O’ levels from 1979, reviewing tutorials for MSc students! Who would have thought that in July 1979 when I got my dismal ‘O’ level results?
As it happens, the planned tutorials seemed to ‘tick a lot of boxes’ that I expected to see from my PPI (Patient and Public Involvement, for goodness sake pay attention!) experience, so it got the thumbs up from me. And I got a Viennese Whirl (other very crumbly snacks are available) and a cup of tea from them. Plus an attendance allowance and travelling expenses. Another good and interesting day. How does he do it?
On Wednesday evening, I received a text from Plymouth University, CSRC (OK, I had to look that one up myself – it is the Clinical Skills Resource Centre – basically it’s the Medical School) asking me to meet up with them to discuss progressing their PPI (as above) policies, practices and procedures. I am quite flattered!
Yesterday was Thursday, which I spent a bit of time doing the pre-reads (note the plural!) for co-chairing the (take a deep breath) Parkinson’s UK, Research Support Network, PPI, Involvement Steering Group (the “ISG”) annual face-to-face meeting in London next week. That involved looking at some of the research we have been involved in this year, and thinking about what we want to achieve next year. We usually meet monthly via video conference, but I do enjoy the annual face-to-face meetings. They are much more personable.
And then, to blow away the cobwebs of pre-reads I took Barney for a walk. In the pre-curser to former hurricane Lorenzo. “Wet” just about covers it. That, too, was interesting, but in a different kind of way. It certainly held my attention.
Should have brought your brolly, Mark.
So that brings us nice and neatly to today, Friday. I was awoken at 06:45 by the sound of someone (Nic) being very surprised in the shower. The cause of the commotion? Unbeknownst to us, the boiler had developed a fault overnight. Nic did her usual trick of running the hot tap on the sink of the shower room, to start to draw hot water through the system. Whilst this happens, she usually disrobes, and then steps into a gentle, thermostatically controlled ‘rainfall’ style shower, all the cold in the pipes having been previously expelled.
Not this morning she didn’t. This morning she stepped into a room temperature douche. It was obviously a shock to her. And her being a mother of three as well! Cover your ears, children.
Nic has yet to be convinced of the benefits.
Nic tried to ring the manufacturer but there was a twenty minute wait in the queue and she was at work (cold wash in the sink undertaken first), so the task was delegated to me.
Anyway, the long and short of this – to avoid being drawn into any Jethro type long diatribes – is that I called the manufacturer (the boiler is still under warranty, thank heavens) to arrange a call out for an engineer. I waited sixteen minutes. I know this because the walk-around phone display panel tells me so. Sixteen minutes, what can happen in sixteen minutes?
Like I said above, we have a wandering (no cable) extension to our phone, so that you can walk around whilst talking on it. It also has a loudspeaker function, which I quite like because I don’t have to hold the phone to my ear, which can make my ‘P’ worse.
So I put the phone on loudspeaker, placed it on the dining table and dialed the number, pressed 1, then 1 again – like you do. Eventually I got the loop message about being in the queue, and it told me that I had approximately 20 minutes to wait. I used this time to start up the computer in the office, because invariably you have to do something on-line with big companies now if you want any help. Whilst I was waiting in the phone queue, my mobile rang. It was the local hospital automatic patient recorded message, telling me that if I wanted a neurology appointment (which I do) to “press 1 now”. At the same time, the landline was telling me “Please hold whilst we connect you to the next available member of the team”. Then the postman arrived and Barney barked at him. Then I got a text from Nic asking how I was getting on. I wasn’t getting on, I was getting off. The ceiling. The joy of Stress and Parkinson’s related anxiety!
It is so important not to get stressed on the phone.
I abandoned the “press any key” instructions of the hospital automatic appointment service on my mobile, making a mental note to ring ‘appointments’ later. As I started to text a reply to Nic, I was unexpectedly connected to the manufacturer…
All in sixteen minutes. Not bad, eh?
It turns out that – according to the fault code on the display, the boiler thinks that the gas is disconnected from it, so we have to have an engineer attend to fix/reset it. We are ‘locked out’ by the fault code, because of the potential gas issue. That makes sense from a safety aspect, but no hot water…
The engineer? Sometime tomorrow, between 08:00 and 17:00.
Like I said, it has been an interesting old week!
Shaken Not Stirred 