Usually I start my ramblings with “It’s been a busy old week, here at the International Headquarters of Shaking not Stirred” – as you well know by now. However, I am now obliged to say “It has been a busy old month…” which is why you have been spared the chore of reading this blog lately. I am sure that you have found better use of your precious time.
Looking at my diary, if I don’t include weekends then I had four days in October without some sort of appointment or commitment. For a retired bloke with a long term condition, that is pretty busy. So today I am going, to quote Shakespeare, (again) Find we a time for frighted peace to pant. And breathe short-winded accents of new broils. {Henry IV part I.}
I could have done with one of these this month!
This month I have been here, there and everywhere, including a trip to London with Nic, to co-chair the Parkinson’s UK, Research Support Network, Patient and Public Involvement, Involvement Steering Group’s annual face-to-face meeting at PUK HQ in Victoria.
Don’t worry, if I mention it again I will just put “ISG”.
The ISG (there you go) does exactly what is says on the tin. It provides a steer to PUK on getting People with Parkinson’s involved in research, and to work together with some very dedicated people involved in Parkinson’s research from the scientific and academic community. This is all co-ordinated by two lovely, hard working and enthusiastic ladies at Parkinson’s UK – Natasha and Annie.
Getting involved is not just turning up, be asked some questions, getting poked and prodded and then sent away again. Involvement means actually having a say in what is researched, how it is funded, how it is supported and how the outcomes are measured by the Parkinson’s community. And taking part in research is not just taking tablets until your hair turns green, or having needles poked into you, it takes all forms of participation, from filling out on-line questionnaires right up to giving blood samples for testing. Clinical trials is the bit where you actually take the tablets – and that is not the same as research.
Of course, some research can actually be fun…
So – part of the meeting was to discuss next years priorities for the ISG, and I am pleased to say that one of our priorities will be “Involving hard-to-reach groups”. I say that I am pleased about this because I spent three years of my Police career as a Diversity Officer, trying to support minority and hard-to-reach victims of hate crime. It was tough going but very rewarding.
It is going to be very challenging by its very nature but I am really going to try to get involved with this as a strategic requirement, because I am concerned that there are far too may people out in the world who have Parkinson’s but don’t have a voice and don’t have access to people and services that can really help them with treatment and advocacy. If anyone has any ideas on how to progress this, please email me.
After the day long meeting with PUK I noticed that my voice had become very weak. Recently I had a dental check-up and my dentist commented on my having a dry throat. She suggested returning to the ENT (Ear Nose and Throat) specialist at the local hospital for any advice they might have. New readers might like to know that I am a cancer survivor, having been successfully treated for throat cancer by a brilliant team in Derriford Hospital, Plymouth, back in 2013.
I got lucky with the appointments schedule and last Tuesday saw Nic and I back in the familiar, but now not scary, ENT dept at Derriford. We saw the Registrar, of whom I am ashamed to say I have forgotten his name, but he really was excellent. After a quick chat about symptoms and a good look in my mouth, out came the jolly old endoscope and it went straight up my left nostril. I am assured that it is only 5 mm in diameter, whereas the old one was 8 mm, but when it goes up your nose and down your throat it feels about the size of a football. Suffice it to say – it makes your eyes water. Once the nasty bit was over the Dr. had a good look at my vocal chords. He turned his computer screen around, and Nic and I had a good look as well. Yuck!
Let me just say, when you have dystonia (involuntary twisting movements, usually in the limbs) and someone shoves a camera up your hooter, it is quite tricky to sit still. As I demonstrated.
I would have to say that the new camera was an improvement on the old one
Anyway, it turns out that my vocal chords were all red and a bit swollen. This was diagnosed as being caused by acid reflux, which is burning my throat and giving me the feeling of a permanent sore throat, which in turn makes me feel dry.
The treatment? Firstly, to kick the habit of continuously clearing my throat. Apparently clearing your throat is the most damaging thing you can do to your voice. The Dr. made me do it with the endoscope in, and it showed just how it makes your vocal chords all distorted. Not nice! I had not realised just how often I coughed and cleared my throat until I had to stop doing it! Next treatment – lots of water – at least two litres a day – or as the surgeon told me after the throat operation in 2013, “It’s hydration, hydration, hydration, Mark”.
Of course, being modern medicine, there had to be some tricky to pronounce tablets. Omeprazole anyone? Thought not. And the icing on the cake – a well known brand of medicine for heartburn and indigestion. You know the one. I have been prescribed two 500 ml bottles of the stuff, 10 ml to be taken after each meal. The only problem is…it comes in aniseed flavour. Aniseed??? Who the hell makes medicine that is aniseed flavour? It is bad enough having to remember to take it, without having to endure the disgusting smell and flavour of aniseed. It really is adding insult to injury. So to soften the blow a little I have found a packet of smarties in a cupboard, and if I am a good boy and take my medicine I reward myself with a smartie. Childish? Me??
Even stuff this doesn’t taste of aniseed
So now that my poor vocal chords are starting to recover I have resurrected my old voice training routine. If you are out and about in the Devon countryside and come across some madman walking his dog whilst loudly counting from one to five and back again, or manically chanting the days of the week, that will be me. Be advised to step away quickly if you do see me, because I have been known to sing a few scales as well, and nobody wants to hear that – not even Barney.
I taught him all he knows…
So it is tra la la la la until next time – where Mark meets some medical students!
Shaken Not Stirred 