Say “Ahhhhhhhhh”!
This week I started voice therapy.
My voice has been getting frustatingly quiet. After realising it was related to PD (another of the 40+ symptoms), I managed to get some voice therapy sessions through the NHS.
The sessions last half an hour by video link and it’s interesting to see (hear?) the process. Apart from saying “ahhhh” a lot, I had to come up with 10 phrases that I commonly use, which included “Hannah, we need to leave now!” and “Nice out”.
As well as saying long “ahhhs” I also was asked to think of different topics while trying to make my “ahhhs” last as long as possible. One topic that I was given was Beatles songs, and another was old schoolfriends/teachers.
I found that trying to make myself louder for longer was bloody hard work. Below is a picture showing how sweaty I was (as well as the classic hunched parky pose – another thing I’m trying to counterract).
The sessions last for four weeks so the office has to put up with my squawking for a while yet, but apparently I make less noise than the herring gull chick nesting on the roof.
World Parkinson’s Congress 2023
I originally had the intention of blogging day by day but I was soooo tired at the end of each day there was no chance of typing anything that would do it justice!
Day 0 – 4/7/2023
After a mad dash across Barcelona on Monday to register just as they were shutting up shop (thanks to Easyjet), I met up with Nick and Becky for dinner. Nick, who works for the NHS, set up our local “Parkies at the Pub” group for those of us who can’t make the usual Parkinsons meetings during the day (as we’re working). He and Becky were volunteering at the congress, and all the volunteers in their purple t-shirts were really helpful and friendly throughout the week. Then it was up early on Tuesday for a morning run along the beach before heading into the conference centre. (As you can see it was a beautiful sunrise)
Approaching the centre and on entering I was greeted by some friendly signage:
The session I had chosen was “Advocacy and Activism in PD” – and I was hoping to meet some of my PD social media heroes. It was a useful session, and a bit eye-opening too, with one advocate, Kabugo Hannington Tamale, explaining how in Uganda that PD is seen as witchcraft, with sufferers being locked away (including his mother). Later in the week he would receive an award for outstanding community service, and well deserved it is too.
After the session I said thanks to Larry Gifford and his wife Rebecca (it’s not madatory for wives to be called Rebecca, honest). They host a podcast called “When life gives you Parkinson’s” and it was a helpful guide through the early days of my diagnosis when I didn’t know much about the disease or how it would impact on me.
After the session I had a quick trip into Barcelona for some sight-seeing, but I soon had to head back to the opening ceremony. After we left the packed hall and headed for the welcome reception we were applauded by a guard of honour of the volunteers – which was really touching.
Day 1 – 5/7/2023
I was up early again on Wednesday (it’s not difficult, I was waking up at 5am at the latest anyway thanks to PD) to join the “dopamine dunkers”. They were led by Richelle Flanagan (another of my PD socical media heroes) who had started a daily plunge into the sea (or nearest body of water) to boost her dopamine levels. (The photo is from Friday’s “dunk”) Having a splash in the Mediterranean was bliss compared to my usual swim in the Solent off Portsmouth.
I’d volunteered to do a radio interview together with Cureparkinsons in order to help raise awareness about PD. They recently carried out a survey which showed a disappointing level of understanding about the disease and its symptoms. So I had to find a quiet corner of the conference centre, which wasn’t that easy with nearly 3000 people millling about. I took the request to “keep your answers to less than 30 seconds” to mean “as few words as possible” but, with some prompting to expand my replies, I hope it went ok.
My first session was a round table discussion about “Aerobic exercise and PD”. There were a dozen of us gathered around and we covered a lot of ground (no pun intended) about types of exercies, dosing, side effects, adherence and loads of other useful discussions.
Part of the congress was a large exhibition area filled with stands from charities, medical companies and a large poster display covering all sorts of topics. It was really interesting to chat with Cureparkinsons, the Michael J Fox Foundation and others.
Day 2 – 6/7/2023
After another jog along the sea front with another stunning sunrise it was off to an exercise session with the Neuroheroes. They were imaginative, full of ideas, fun, and yes, that is a bubble machine.
After lunch it was it was a workshop session on “Food and Nutrition: The Ins and Outs” which covered swallowing (a common problem with PD), best options for nutrition (which could be summed up as a variant on the Mediterranean diet) and constipation (a really common problem!). There was something that tickled me about the welsh nurse pronouncing “poo” with her accent.
Following the break it was another workshop on “Which exercise is the best time investment?” which covered motivation, appropriate exercise, and online options.
That evening Nick invited me along to the NHS dinner. There were 19 of us and a great time was had by all. I got to meet another of my social media heroes, Jo Yaldren, who had taken part in a documentary “DBS and me” which explored her journey with deep brain surgery. As it had recently been raised as something I should consider, it was great to meet her.
The NHS crew pointed out, normally at medical conferences it is usually only the medical practitioners that attend. The WPC was different because so many of the people at the congress had PD, and the interaction added a whole new dimension.
Day 3 – 7/7/2023
Friday was a last trip down to the beach for a splash followed by an award ceremony for Kabugo and Richelle for outstanding community service. It was a moving experience and I don’t think there were many dry eyes.
After a final tour of the exhibition and lunch I had to miss the afternoon sessions and the closing ceremony as I was homeward bound to make sure I could get to my next challenge, the Wendover Woods 50 miler in good time.
(Apologies if this blog seems brief but the meds aren’t helping my typing hands this evening and they’re really stiff so typing is painfully slow!)