Batman Brian

A blog by Brian Carson 3 April 2024

All opinions are my own.

This is my first blog of 2024. I can’t believe we are in April already which means that 25% of the year has passed. Where did it go? Previously I have mostly blogged about individual events. However, this year I thought I would try something different and blog at regular (or semi regular) intervals to provide a flavour of what life is like as I live with my Parkinson’s. How I am coping, or not coping, and what I activities and events I am involved with in the Parkinson’s community, and some of the challenges involved.

JANUARY

A new Year!

After the Christmas holiday period I am always keen to get back into my routine. The holiday break was enjoyable but the downside to this time of year for me is the 2 to 3 week period when all the physical activity sessions I take part in are closed. This is not a complaint but a recognition of a period where myself and many other PWP are at the mercy of our own discipline and motivation with respect to maintaining the physical activity that is vital in keeping us active and moving. It is fair to say that I have mixed results during this period, sometimes the motivation to exercise is strong and sometimes a comfy sofa watching tv eating chocolate is the winner.

What my weekly schedule looks like, for activities only. I don’t attend every but get to as many as possible.

Back into Routine

On the second week in January it was back into routine and I was my usual happy self. During this week we celebrated the two year anniversary of the Parkinson’s TT session beginning at Drumchapel and I supported a new Parkinson’s TT session at Dunlop TT Club funded by a Parkinson’s UK Physical Activity Grant.

The inaugural Dunlop Parkinson’s TT session, attended by Provost Jim Todd

Also in January I was pleased to be featured in a Parkinson’s Faces Project which featured black and white photographs of PWP. This project was the creation of Nikolas Koukoulakis, who I met at the ITTF Parkinson’s championships in Crete last November.

FEBRUARY

Trustee Responsibilities

In each of the first two weeks of February I spent two days at the Parkinson’s UK Head Office in London. The first week I was supporting interviews for new staff recruitment and in the second week I was attending a regular Trustee Board review. This made for a very busy, and tiring two weeks and meant I had to forgo some of my regular activity sessions. Unfortunately I also missed the first Glasgow Parkinson’s Support Group monthly meeting of 2024. However I feel very privileged to be the Scottish Trustee for this charity and take this responsibility very seriously.

Stockholm Veteran Open

Immediate after the second trip to PUK Head Office I travelled directly from London to Sweden for a Table Tennis competition. I have previously mentioned my nervousness when travelling, particularly when alone. The first part of this trip in London took this to a whole new level. I had given myself the challenge of getting from central London to Stanstead Airport by underground and by train, with luggage, during the morning rush hour. Not an experience I would like to repeat any time soon. I will spare the details but trying to manoeuvre luggage on escalators and elevators at my pace, with hundreds of people trying to get past me and then packed so tight in a tube train that I could hardly move made it difficult to maintain my happy demeanour, not that anyone in my vicinity was interested. We live and learn.

I arrived safely in Gothenberg and caught up with friends and the following day we travelled to Vasteras near Stockholm for the two day weekend event. The competition was a veteran event with a Parkinson’s event running in parallel. The Parkinson’s player numbers were down on last year and as a result some categories of competition were combined.

On Saturday we were not due to play until midday and for some reason a few of us decided to walk the one mile distance to the arena in the sunshine as we were in no rush to get there. However the sunshine was deceiving and the roads and pavements were covered in ice! Torbjorn was the self appointed “sherpa” for this expedition and led myself, Cecilia, Torgny and Seppo through the treacherous streets. What a sight we must have been, 5 PWP trying trying to remain upright in the icy conditions. Thankfully we made it with no major incidents.

We played the Parkinson’s singles event first. I finished third in my qualifying group winning 2 matches and losing two, narrowly missing out on qualifying for the knockout round. Instead I played in the consolation knockout, reaching the final, and winning a very close match in 5 sets. A good day, rounded off with an event gathering for dinner on Saturday evening.

On Sunday we played a handicap singles event with both Parkinson’s and non Parkinson’s players involved. I was given a very generous handicap which caused raised eyebrows in the other three players in my group (all non parkies). However they took the challenge on in good spirit and we had a very enjoyable group set of matches with me topping the group. I then won my first knockout tie and lost the next one in the round of sixteen. The handicap competition was the highlight of the event for me as it was played in great spirit with everyone having fun.

Seppo and I having fun modelling our event T shirts

After the event we headed back to Gothenberg by train, having been driven to the station by Kjell Ake Waldner brother of… those that know, know. I then had a few enjoyable days holiday in Gothenberg before heading home at the end of the week.

Medication

During competitions it is always a challenge to remain fully medicated, in the “on” state for the duration of the days play, particularly as the timing of matches can be difficult to predict. During this trip I started to notice that the efficacy of my medication was beginning to reduce and not just on playing days. More on this later.

Yes there is more!

Also in February I managed to attend meetings separately with the PUK Scotland Physical Activity Officer, and the Table Tennis Scotland Community Project Manager discussing activity options for PWP. We also had the first meeting of the small team who are organising the Parkinson’s Scottish Table Tennis Open taking place at Inverclyde in August. I even managed to see a couple of Rugby Internationals at Murrayfield, thank goodness this is a leap year otherwise February would not have been long enough!

MARCH

Walking Football

March began with a photo shoot at Hampden Park in preparation for the launch of an agreement between Walking Football Scotland and Parkinson’s UK that will create more opportunities for People with Parkinson’s to participate in Walking Football.

Drew Wilson, Walking Football Scotland, Amanda McKay, Parkinson’s UK, Rose Reilly MBE, myself, and Kenny McLean, President, Walking Football Scotland.

Group Meetings

At our monthly Glasgow Support Group meeting we had a presentation delivered by the Glasgow Memory Clinic on Parkinson’s research and development, which was both interesting and thought provoking.

The following week I was invited to speak at the AGM of the Parkinson’s UK Edinburgh Branch. I spoke briefly about my Parkinson’s journey and my role as trustee for Scotland.

Speaking at the Edinburgh Branch AGM

TT Events

I spent a couple of Sundays this month in sunny Bathgate taking part in TTS Veterans events at Bathgate Academy. Firstly a banded event where players are placed into groups by band and play a round robin against each other. I was in a group of 8 in Band 5 and won two matches. My previous outing was in Band 8. The second event was the Scottish Vets National Championships, where I was less successful but enjoyed the experience.

Dunlop Parkinson’s TT Visitors

I participated in a visit to the recently introduced Parkinson’s TT session at Dunlop TT Club. Present were, Caroline Rassell (CEO of Parkinson’s UK),Alan Brown (MP for Kilmarnock and Loudoun), Tanith Muller (Parliamentary and Campaigns Officer – Scotland at Parkinson’s UK), Brian Carson (Parkinson’s UK Board of Trustees and Chairman Parkinson’s Table Tennis Scotland) and Stuart Wallis (Community Project Manager – Table Tennis Scotland) joined us to get a better understanding about the work the club is doing, especially for people with Parkinson’s disease in the region.

Host Martin Oestmann with the visitors

Medication Update

I mentioned earlier that the efficacy of my medication was reducing. On numerous occasions recently my “off” times have been increasing and the four hour coverage of each medication dose was at times being reduced to two hours. This was particularly prevalent when I was involved in vigorous exercise. Additionally some of the “off” times were arriving with no warning, like a switch being thrown. On one occasion during a league match I was fine at the warm up and during the first set of a match. But early in the second set the switch was thrown. I could not put any pace or spin on the ball and my movement slowed down severely. I had to adapt to a blocking and pushing game which is alien to me and inevitably lost the match, and the next one. I took medication as soon as the “off” period began but it can take up to an hour to kick in.

I have since had a review with my Parkinson’s Nurse and the daily dose one of my medications has been increased and the period between doses has been reduced to improve coverage. An additional medication to improve daily coverage is also being introduced.

Increases in medication are always troubling to me personally, as I view them negatively as a step to address deterioration in my condition and this moves me closer to a time when more drastic treatment will be required.

However I fully respect and trust the medical team responsible for my care and know this is the correct option to maintain my quality of life at this point.

Summary

A very busy start to 2024 for me but I would not want it any other way. As I write I am excitedly waiting for the birth of my granddaughter, my first grandchild. I am anticipating this will make the next three months and beyond even busier, happier and more rewarding as I get to know her.

For now it’s continue with the Easter break, and breath.