A Blog by Brian Carson 24 October 2023
All opinions are my own.
When I started writing blogs early in 2022 I intended to publish something every one or two months documenting my Parkinson’s experiences, with additional posts for major events I have attended.
However this summer and autumn I have had some complications with my condition, some of which I will mention here, as well as some non Parkinson’s medical issues, and as a result I have not had my usual motivation to write blogs, although I have published regularly on Facebook.
This dip in motivation has served as a reminder that we need to consider not only our own circumstances but also the circumstances of those around us. It is very easy to become oblivious, or worse, unsympathetic to others as we get immersed in our own lives and forget that everyone is dealing with their own issues, including many things we may be unaware of.
That’s is not to say I have not been busy and active and when I started listing the activities I have been involved in during this period, some of which are described below, I wonder where I get the time, and since publication of my last blog in late June it feels like I have packed a years worth of activity into a few months.
Listed below is a summary of some of my recent activities with a Parkinson’s persepective described in some areas.
July
I was invited to attend the King’s Garden Party at Holyrood as a representative of Parkinson’s UK. This was in recognition of my volunteer work for the charity. Despite being one of the wettest days of the year both my daughter Robyn and I enjoyed the experience.
Later in the month I took the opportunity while in London for PUK business to visit the Parkinson’s UK Brain Bank at the Department of Brain Sciences, Imperial College London. The world’s only brain bank solely dedicated to Parkinson’s Research.
It was fascinating to see and learn about the great research work going on in various locations and this served as a reminder that there are so many committed and dedicated people working in research to better understand this condition, and help those of us affected
August
In the first weekend of the month we held the inaugural Parkinson’s Scottish Table Tennis Open at the Sportscotland National Centre at Inverclyde.
Following discussions between the Scottish Parkinson’s TT Association and Table Tennis Scotland an agreement was reached to hold a Parkinson’s event this year. Very early in the planning process it was decided that this would be an “open” meaning that players from any country would be welcome to compete.
The intention was to build on the success of the various Parkinson’s events that have taken place in the last two years in the UK and Europe, all of which have been supported and attended by numerous UK players.
I will not repeat here what has been previously written about this very successful event. I have included a link to the competition report for any readers who have not seen this previously.
I worked very hard on this competition over several months alongside a small but very committed and capable team from Table Tennis Scotland (TTS), and I am very proud of the competition and experience we delivered. This was a steep learning curve for me and I learned a great deal about competition planning and hopefully increased the awareness in the TTS team of Parkinson’s and its effects. We had a target number of 50 players and one of my tasks was to encourage participation, particularly from around Europe as I have met so many foreign players when attending competitions abroad.
This proved both time consuming and challenging, see below. We ended up with 46 players including a number of players playing in their first competitive event, and 9 non UK players. This turned out to be an ideal number especially for a first time competition.
Note: TTS have already committed to staging the competition in August 2024 and we already have commitment from many foreign players to attend. The facility has accomodation for 120 people on site and I fully expect the event to be oversubscibed.
I experienced some stress during the lead up to the event as we strived for success. This was not helped when I was advised about an alleged boycott of our event being encouraged by some in the PPP organisation. The event was TTS controlled and TTS are affiliated to the ITTF. I have discussed the PPP v ITTF conflict previously and will come back to that later in this blog. I have no issue with both organisations having differences but when these lead to alleged sabotage of each others events, I find this distasteful and disrespectful to the People with Parkinson’s both organisations claim to be trying to help.
This is where the first impact to my condition occurred. I found that my symptoms were impacting me more than normal and that I was having increased “off times”, ie the efficacy of my medication was reduced as it was wearing off long before the next dose was due.
Stress and Parkinson’s
I was not aware of the potential impact is stress on my symptoms and only realised this after discussion with some other PWP and conducting some on line research.
During my working life I learned to recognise when I was stressed and was able to manage this appropriately when necessary. However this time it crept up on me.
There are a number of reasons why stress worsens Parkinson’s symptoms, such as tremor, slow movement, freezing, speech and swallowing difficulties.
Dopamine, which is deficient in the brains of people with Parkinson’s, is used by the body to produce adrenaline. Adrenaline needs to be produced in order for the body to cope with stress. It is therefore not surprising that people with the condition do not produce adequate adrenaline to cope with physical, mental or emotional stress under control.
Therefore for a number of weeks before and after the event I experienced a “worsening” of some symptoms due to this stress. Once I recognised what was happening I was able to deal with it by sharing some workload, managing my medication differently, and ensuring I had sufficient down time to relax.
Despite taking the actions described above to deal with the stress the impact remained with me for several months. I continued to be active and mostly kept to my regular schedule but this felt more habitual than enjoyment and impact driven.
Thankfully this did not prevent me from enjoying the Inverclyde event and having a great time as did everyone involved. There was the added bonus of a bronze medal for third place in the mixed doubles with Joy Paul.
Andy Cassy, Jenny Thomas, Joy Paul and I receiving our Bronze medals from James Jopling
Drumchapel TT Handover
I have written many times about the weekly TT sessions we have at Drumchapel and how these were set up by obtaining a Parkinson’s UK physical activity grant on behalf of the Glasgow Young Onset Parkinson’s Support Group . This month we reached a major milestone when we handed the running of the sessions permanently to the club. The sessions are now a permanent fixture in the club schedule and this week discussions started on introducing a second weekly session for PWP as demand is so high.
A busy Parkinson’s session at Drumchapel
September
I made my debut at the Scottish Vets Banded Tournament in Bathgate. I was placed in Band 8, won 5 matches and lost 1 match. This put me in a 3 way tie for first place in the band based on matches won. However after a points count back I ended up in 3rd place but was happy with my performance.
In action at the Scottish Vets
A few days later I attended a reception at the Scottish Parliament “Celebrating Volunteering in Scottish Sport”.
This was a great opportunity to chat with many people about the value of physical activity for People with Parkinson’s and share some of my experiences. I met some fantastic people and even tried some new sports, Boccia and Handball. I think I will stick to Table Tennis.
With Jenni Minto MSP, Minister for Public Health, Amanda McKay Parkinson’s UK Scotland Physical Activity Coordinator, and James Jopling Parkinson’s UK Scotland Country Director.
At the end of the month it was back to table tennis. I travelled to Austria to play in the PPP World Championship in Wels.
This was my third consecutive Parkinson’s World Table Tennis Championships and the largest yet. A total of 286 players from 23 countries, with 48 tables in use at the beginning. PPP have a philosophy that anyone who wants to play should be able to play, which is commendable. However with more and more PWP taking up TT each year maintaining this philosophy of everyone can play will become more difficult as the size of venues is not infinite. The alternative could be to increase event durations but this could introduce other difficulties eg fatigue, increased cost, increased time away from family and work, etc. I don’t know how this will develop but i am interested to see how it goes.
As always I thoroughly enjoyed the competition experience despite some tough defeats, it’s always great to see everyone and have fun in a brilliant atmosphere. I had the dubious honour of playing in the longest set of the tournament losing it 23 to 21 in a match against Nenad Bach which I won 3-1.
Umpire and good friend Javier can’t believe the score!
I was also asked to say a few words at the players party about walking football in Scotland and the benefits for PWP. A daunting prospect with 500 people in front of me but hopefully the message was clear, well at least to the English speakers present!
There was also a statement read out about the ITTF who in their wisdom released publicity during this PPP event for their own rival event taking place in five weeks time. This is the second time ITTF have used this strategy, which prompted a statement from PPP encouraging players not to attend the ITTF event. Many will comply but I will make my own decisions what events to attend, and I will compete at the ITTF Parkinson’s World Championships in Crete in November.
I also represented Scotland at a PPP seminar one evening during this competition where 19 countries were represented. There was inevitably a review of the success of PPP to date which is phenomenal. The goals of the organisation were also stated:
- To help PWP
- Connect with the Scientific Community
- Achieve Paralympic status and participation
- Find a cure by 2027
Admirable of course but too many unanswered questions remain. Including what is behind PPP and what can it offer, not only in achieving the goals above, which seem very idealistic and in some cases contradictory to other statements, but also in terms of support to countries and organisations that have aspirations to host TT events. To date this has proven to be limited to some publicity and use of the PPP brand.
On the plus side, thanks to Joy and Stephen Paul for a day trip to Salzburg before returning home. It was a pleasant change to have some down time and see some sights.
A relaxing day in Salzburg
October
After Wels it was straight home and into preparation for my daughters wedding which was 5 days later. A great day with family and friends and a very proud day for me personally.
The following weekend was the Parkinson’s UK AGM in Birmingham. The first in person AGM since before lockdown although there was an option to attend virtually.
A very successful meeting rounded of by having a recording made of the Movers and Shakers podcast with Gillian Lacey-Solimar, Mark Mardell and Paul Mayhew-Archer participating alongside, Caroline Rassell , CEO and Gary Shaughnessy, Chair of the Trustee Board. A lively entertaining session with some real challenges set to increase the profile of Parkinson’s with the UK government.
Movers & Shakers Podcast Recording
I was also confirmed as the successful candidate for the post of Scotland Trustee at this session. A post I will hopefully hold for the next 4 years, working closely with the other trustees and the executive team and representing the Parkinson’s community in Scotland.
In summary a very eventful few months with lots going on and many challenges to deal with.
As I write I have just competed in the inaugural People’s Ford sponsored Walking Football Festival at the Toryglen National Football Centre in Glasgow. I intend to issue a separate blog for this event.
End
Batman Brian 
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