A Blog by Brian Carson 2 April 2026
All Opinions are my own.
This is the first blog I have written in well over a year. My blogs were usually prompted by an event or activity I was involved in, with most of the emphasis on physical activity and how this positively impacted my condition.
When I began writing a few years ago my goal was to inform about life with Parkinson’s and to demonstrate that life does go on after a PD diagnosis, not just “life” but the possibility of living your best life.
It has been said many times, each individual living with Parkinson’s is different and therefore each will have their own regime to manage the condition. This blog describes recent changes in my condition and the impact of these changes. I originally included a summary of my activities from 2025 describing how I keep busy and focussed, but have moved this into a separate blog, (Part 2) due to the size of the document. There is a link to part 2 at the end of this blog.
2025 was an extraordinarily busy year for me and when I think back, I don’t know how I managed to fit it all in. Or maybe I do! Insomnia is one of my most difficult Parkinson’s symptoms, but it does provides additional awake hours. Sometimes I use this time wisely, and occasionally I don’t. It is not unusual for me to be doing laundry and ironing in the wee small hours. However insomnia can also cause major disruption to my daytime plans as the resultant fatigue can be debilitating.
At year end I had some thinking time and decided to slow my pace in 2026, This was based on many factors, a new granddaughter arriving in the spring, the progression of my condition with a potential Deep Brain Stimulation (DBS) operation this year, (details below about DBS under the My Parkinson’s heading).
Due to other commitments and responsibilities, many of the table tennis competitions I attended last year involved arriving just before the start and leaving as soon as the event finished, and in between spending long days in a sports hall. I have visited some nice places to compete in and not had the time to experience and enjoy them.
Having many activities going on also impacted some of my preparation time for these events. I performed ok in some events and very well in one or two but mostly feel I could have done better.
Therefore, my plan for 2026 is to compete less, train more, and train smarter to be as prepared as possible when I do compete. I also want to ensure I have maximum time for my family, myself and my other interests.
These are good intentions but as I commenced writing this blog in late February, I was on a flight to New York to compete in the PPP New York Table Tennis Open, having already competed in Denmark in January. I have also committed to the PPP World Championships in Hannover in September (more on this later) and I hope to play in the ITTF World Championships in Shanghai in October. There are short trips to Belfast and Brighton firming up for May and June! Obviously, I still have some work to do in prioritising my life! 🤷♂️
My Parkinson’s Progression
NOTE: During a recent discussion with other PwP the question was asked – are we sometimes too nice? The context for this was various projects and campaigns being managed by the charity Parkinson’s UK. These projects and campaigns are driving to increase medical care, improve benefits, increase research and much much more.
Focussing on my own situation, like many others I try to be positive and constantly transmit the message – yes I have Parkinson’s but I am doing everything I can to help myself and live my best life. This is often interpreted as “I have got this” and “I don’t need any help”.
However, individually with those closest to us, and collectively with politicians, Health Boards, benefits agency’s etc etc, we need to continually stay on message that Parkinson’s is an incurable degenerative brain condition, which in many cases shortens life expectancy
2025 could be described as a milestone year in terms of my Parkinson’s progression. Despite my very active lifestyle my symptoms continued to progress. This resulted in my medication being continually increased both in terms of quantity and periodicity of doses. Since mid 2025 I have been taking medication every 2 hours in an attempt to manage my symptoms to a point where I can function “normally” most of the time. This is not always successful with some doses not lasting two hours and some doses not having any effect at all. Additionally, the side effects of the increased quantity of medication can often outweigh the benefits of the medication.
At my annual appointment with the Neurologist we discussed the option of Deep Brain Stimulation (DBS) and came to a decision this was the next step for me. June 2026 will be the 9th anniversary of my Parkinson’s diagnosis. What DBS provides is an almost constant state of being medicated, i.e. it reduces the need for most but not all medication which should remove the continually fluctuating on and off states that I experience throughout the day.
DBS is described as an advanced therapy that involves surgery in the brain and therefore the decision to proceed was not taken lightly. I have discussed this extensively with the medical team and other people with Parkinson’s who have had this treatment. It is not a cure but does provide some form of re-baseline. It can take up to a year after the operation to get the DBS optimised, as each adjustment may need 4-6 weeks to be assessed. Post the operation the condition will continue to progress but should be better controlled using DBS.
The link below provides additional detail on DBS.
Deep brain stimulation | Parkinson’s UK
Like all medical procedures there is a waiting list and for this particular operation there are a number of assessments to be undergone to ensure it is the best option for each individual. I completed an initial neurology review in the Autumn and late in December underwent the “Levodopa” challenge. This involved a series of movement, strength and balance exercises “off” medication which are then repeated “on” medication. These tests were recorded on video for analysis and provide a view of what the potential improvement provided by DBS could be in enabling an almost continuous on state.
I had a psychological review in late March. This was the final part of the DBS assessment protocol and am hopeful that the operation may happen this year, but this will be determined by the size of the waiting list.
New York Feb/Mar 2026
This trip was the prompt for the blog and I started writing on the flight to NY. However, the words just seemed to flow and the blog expanded to include a review of 2025. I have separated my highlights of 2025 into an Part 2 in a separate blog for ease of reading, or ignoring, 🥱it is the readers choice!
I decided only a few weeks before the event to enter the Ping Pong Parkinson’s New York Open. Once the idea was in my head it took almost a week to convince myself I was capable of making the journey on my own. I have travelled extensively around Europe in the last few years and regained most of my pre PD confidence. I am mostly comfortable with the short flights involved, and the ever increasing number of airport transfers, which can be very stressful. However, heading to the USA seemed like a step further and I considered all the potential risks before deciding to go.
For the first time ever I booked passenger assistance when booking my flights. This meant I was escorted at all times in the airports, sometimes in a wheel chair. At times this felt like overkill but on a couple of occasions during the journey I had “off” periods, (the unpredictability of Parkinson’s) which more than justified the decision to book assistance. Using passenger assistance removed almost all of the stress of travelling.
Once that decision was made to travel to NY, my first ever trip to the US, I decided to cram as much in as possible, as this may be my only chance to see the city.
Before I arrived I had booked activities for my first full day, morning, afternoon and evening, and I continued each day planning and booking activities for the following day.
The PPP table tennis competition was on Sunday 1 March at Westchester Table Tennis Club, an hour by train from NY Grand Central. Through the organisers I arranged to meet a group commuting by train from the city to Westchester and travelled with them.
I have previously mentioned the medication adjustments made during competitions to be “on” when it is time to play a match., which can be a challenge and is sometimes exacerbated by changes in match times This was my first experience of needing to factor a 5 hour time difference into my medication routine. During my first few days there were numerous times when I was under medicated and struggled to move with much purpose, and a few periods of over medication causing Dyskinesia (uncontrolled movement). This settled after a few days but was repeated on my return home as I adapted back to UK time.
The event itself was well organised and run and we had a great time. As always at these events, the atmosphere is so positive and everyone so friendly and welcoming making it a great experience. Henry Durr and I were the only non Americans taking part. Each of us did not know the other was going until I started posting on Facebook from NY. Henry got in touch from Toronto where he was spending a few days before heading to NY and asked if I was playing in the Open. We agreed to play doubles together, winning the event. I was interviewed by a reporter and featured on an item on the event on the local channel 12 news. We both subsequently appeared in the MetroSports Magazine.
https://online.anyflip.com/mgwsk/wmir/mobile/index.html
On my final morning I decided to have a look in Macy’s. I was heading for the 9th floor and used the escalators. At each floor I turned 180 degrees to step onto the escalator to the next floor up. This was going well until I got to the 6th floor turned 180 and there were no more escalators and I realised I was in the middle of the ladies Spanx department!😂 I immediately thought of the Father Ted episode where the priests wander into the lingerie dept in a major and store panic at the potential scandal if they were “discovered”. As I was not needing any new Spanx I casually walked on to find the route to the 9th floor. 🏃♂️
Note: Ping Pong Parkinson’s 2026 World Championships – Hanover
I mentioned this event earlier. At the time of registration there were 600 playing places, a new record for a PPP event. All playing places were booked within a few days leaving many players disappointed. The organisers have since increased the playing numbers to 1000 to ensure everyone who wants to play can play. I commend the organisers on their commitment to make the event available to everyone who wants to participate. However as these events have been increasing in capacity year on year the quality of the events have sometimes been compromised. Longer days, long periods between games, sometimes with nowhere to sit (you need to remain close by and be ready to play), reduced space between tables.
Many players are accompanied by family, friends, and sometimes carers, meaning there could be in excess of 1500 people attending the event.
As these events are organised and run by volunteers there is more reliance on players to umpire matches, especially in the early stages. Many players are not comfortable umpiring and have had no training or experience of umpiring.
After discussion with some other Scottish players we have decided to withdraw from this event. With the current progression of my symptoms i feel I would not enjoy this event as it may be quite stressful, noting exposure to stress can increase the severity of Parkinson’s symptoms.
I wish the organisers every success and I will be following the event online.
Part 1 End
Link to Part 2
Batman Brian 
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