Batman Brian

A Blog by Brian Carson 8 July 2024

All Opinions are my own.

April

My Grandaughter Zara Arrived😃💖

I finished my last blog while waiting for the birth of my first grandchild in early April. Zara arrived a few days later, 10 days after her due date but absolutely worth the wait. She has brought so much into our lives.

Adjustment of my Parkinson’s Medication

I changed my medication routine early in April to address increased off periods where my medication was wearing off long before my next dose was due. This involved taking medication every three hours (it was every 4 hours) and taking a new drug once a day to help even out the medication levels and “flatten” the peaks and troughs between doses.

This was a difficult transition and required patience as these changes take time to work. Almost immediately I started to experience increased Dyskinesia. This is involuntary movement which is a known side effect of some Parkinson’s medications. This manifested in the form of erratic head movements later in the afternoons and into the evening causing uncomfortable neck pain. I discussed this at a recent appointment with a Neurologist and the advice was to persevere for a while longer. As I write I am still persevering!

Every time my medication dose is increased to address changes in my condition, I start to worry that my rate of deterioration is increasing and that medication options are diminishing. It may be that the rate of progression is not increasing but continuing at a steady pace but any increase in medication is a source of worry for me personally.

During the discussion with the Neurologist I was advised to consider Deep Brain Stimulation as a treatment option. This took me by surprise and supports my view that medication options are reducing. I will come back to this later in this blog.

World Parkinson’s Day 11 April

This year the theme for WPD adopted by Parkinson’s UK was ” There isn’t one Parkinson’s Journey”. This was to highlight that despite the high number of PWP and the continual increase in numbers of people being diagnosed, that everyone has a different experience, mainly as a result of the number of symptoms associated with the condition and the individual permutations of these symptoms experienced.

PUK gave me the opportunity to contribute to an article in the national press on this subject to give my perspective of living with the condition.

I also appeared in a television and a radio interview with the Parkinson’s UK Country Director for Scotland James Jopling, on living with the condition and publicising the improvements needed in the NHS to improve the care and support needed for the Parkinson’s Community..

This was a packed day which started with my usual weekly walking football session. This was followed by a lunch in recognition of WPD hosted by the Celtic Football Club Foundation, who sponsor the Parkinson’s WF sessions at Toryglen in Glasgow. Afterwards I headed to the BBC to record the interview mentioned above.

The day following WPD I was at East End Park, the home of Dunfermline Athletic for the launch of a new Parkinson’s Walking Football session. This is the first session launched by Walking Football Scotland following the agreement reached between Parkinson’s UK Scotland, and Walking Football Scotland in March this year. These sessions are a collaboration between Dunfermline Athletic and Raith Rovers, two rival teams who are working together to support the Parkinson’s Community in Fife.

Also this month I attended an event titled “Parkinson’s Research in Scotland, an event for World Parkinson’s Day”. This was held at the Royal College of Physicians in Edinburgh and the event was a collaboration between the Parkinson’s UK Scotland Research Interest Groups and the Universities of Dundee and Edinburgh.

The day started with a series of very interesting and informative, and sometimes very technical presentations given by various scientists working on Parkinson’s research. The afternoon presentations were more of the same but were deliberately “adjusted” to make the technical aspects of the projects more understandable to the layman.

The day ended with a panel discussion on various subjects, not just research. I always come away from these types of events feeling positive about the breadth of research being undertaken by so many dedicated scientists. However this time I came away less enthused then previously as during one of the discussions it was made clear that we are in the very early stages of a very long journey trying to understand Parkinson’s, it’s causes, variations, and ultimately how to cure it.

Kilt walk

On the last Sunday of April I spent the afternoon in Dumbarton on the route of the Glasgow to Balloch Kilt walk, with PUK Scotland fundraiser Julie Ionta. This was an uplifting experience greeting and thanking the walkers who were raising funds for Parkinson’s UK. Each group shared with us how the condition is now part of their lives, mostly through friends or family having Parkinson’s, and how this has motivated them to fundraise for the charity. The motivation and commitment of everyone of them is inspiring.

Ayrshire Table Tennis League

After a gap of 30 years the Ayrshire Table Tennis League has been resurrected with three divisions included this year. Fixtures were scheduled for April, May and June. The matches were played in Dunlop Village Hall, Mossblown Community Centre and St Matthews Academy in Saltcoats, the home venues of Dunlop, South Ayrshire and North Ayrshire TT clubs respectively. I played in Division 1 for South Ayrshire TTC where I attend a weekly Parkinson’s TT session. Division 1 was a big leap for me, I play in Division 4 of the West of Scotland League and despite some close games I recorded zero wins. However, even with me as a handicap the South Ayrshire team finished in second place in Division 1.

May

PPP German Open

In early May I travelled to Nordhorn in Germany to play in my third consecutive PPP German Open. Travel was complicated due to the location in the North west of Germany just over the border from The Netherlands. I opted to fly to Amsterdam and take the train to Nordhorn. This involved five train journeys each way! I have previously mentioned my nervousness of travelling with Parkinson’s and as I was making this journey alone I think I this particular journey introduced a new stress level to myself. My daughter Robyn helped me plan the train journeys and it all looked reasonable apart from one changeover at Utrecht Centraal where I had six minutes to change trains. Remarkably this went ok on the outward journey, helped by a short delay in the departing train. On the return journey I was full of confidence that this would not be a problem, as I was arriving at Platform 8 and departing from platform 7. My bubble was burst when I arrived at Utrecht Centraal to discover the station was configured into two areas. Yes, unbelievably area 1 contained platforms 1 to 7 and area 2 contained platforms 8 to 16. I made the connection with only seconds to spare after a frantic run across the station, not an experience I would like to repeat any time soon.

This competition event is always impeccably organised and takes place in superb facilities. This year was no exception and it is always a fantastic experience getting together and spending time with this group of People with Parkinson’s, who all put so much in to this event and I am sure enjoy it as much as I do. The positive atmosphere is infectious and I am smiling now as I recall the event writing this blog. As the only Scot participating I won the “competition” to carry the Scottish flag at the opening ceremony. 🤪

The Opening Ceremony

In terms of my performance I can say I have mixed feelings when I considered this after the event. I have played a number of events now in the Class 1 men’s singles category but have failed to make any impression and get beyond the group stages. This is despite extra training and coaching that I know is improving my game. For this event class 1 had 60 players and I was seeded at 40. There are players in the lower half of the seedings that are beatable but the top half of the group feel like a class of it’s own especially the top 15 or so, and this is who I need to win against to progress to the next stage. I will keep training and hopefully keep improving and continue to seek qualification from the groups at every event.

On a more positive note I played doubles with Andy Cassy of England in the Class 1 category. We did not qualify from the group but had some very tight games and qualification was certainly within our capabilities, unlike my singles experience. We played in the Class 1 consolation doubles which was a straight knockout event, progressing to the final which we won 3 sets to 2 in a very nervy but exciting final. This was all thanks to Andy who coached me through the games not only in terms of my tactics but also reading the tactics of each opposing team and adjusting our play accordingly. It was great to get on to the podium with Andy even if the reward was only a pair of PPP socks and a TT ball, 😂 there are no medals in consolation events.

Trustee Responsibilities

I had a couple of visits to the Parkinson’s UK Charity head office this month for regular meetings and reviews, plus a couple of additional sessions that I could attend virtually. During one of these visits I was delighted to be invited along with other PUK Trustees, board members and fundraising staff to support the launch of a multi year fundraising appeal in support of the Parkinson’s health and care workforce. The event was held in the LeadenHall Building on the 42nd floor. This initiative will fund a number of Parkinson’s Nurse Specialists and Allied Health Professionals around the country improving the support for PWP. The major highlight of this event for me was meeting a number of Parkinson’s Nurse Specialists and hearing about their fantastic work and their commitment to their Parkinson’s patients.

The Leadenhall Building

Postponed Event

Late in May Parkinson’s UK Scotland had an event scheduled in the Scottish Parliament titled Get Active – Get Creative. This reception was planned over several months as an opportunity to demonstrate some of the physical and creative activities that help people with Parkinson’s to live well. From walking football and singing, to art, exercise classes and drumming, we know that staying active, social and creative makes a huge difference to people with the condition – and MSPs and guests would be encouraged to take part in activities and conversations, rather than listen to lots of speeches. Unfortunately this event was postponed at very short notice due to a knock on effect of the General Election called for 4th of July. It is intended to reschedule this event but this may not be possible until early 2025!

June

Fundraising Walk

The first “Walk for Parkinson’s” event of the year took place in early June at Chatelherault Country Park near Glasgow. A thoroughly enjoyable day with more than 200 walkers helping to raise money for Parkinson’s UK. It was great to chat with so many people who are committed to the charity and support them as they completed the challenge. It is great credit to the PUK Scotland staff who organised the event and helped on the day to ensure everything ran smoothly. A special mention for the “Parky Sharky’s”, Hannah and Grant Shearer who completed the course in shark costumes making it 10 times more difficult but looked as if they enjoyed every minute. The event raised in excess of £26k for the charity which is fantastic. Well done to all involved.

GYOPG Summer Outing

The Glasgow Young Onset Parkinson’s Support Group held their annual summer get together at the West Brewery at Glasgow Green. It was great to see so many members there with friends and families relaxing with a few drinks and some food. It was also nice to have some of the Parkinson’s UK Scotland staff join us along with some of the coaches and instructors from various activity sessions that we support and participate in.

Walking Football Festival

On Saturday 22nd June, 83 football teams came from as far north as Tain and as far South as Gretna to join together, and broke records once again for the biggest one-day walking football festival in the world – the WFS Scottish Cup and Festival 2024!

The event, sponsored by leading Scottish health charity Chest Heart & Stroke Scotland took place at Glasgow Green Football Centre, where over 800 players from across Scotland competing in the tournament across various categories.

For the third year in succession we entered a Parkinson’s Team, the only one, in this event. As always this was great fun and everyone enjoyed the day. We played six games, won 2, and lost 4. One of our defeats was a close game but the other three defeats were heavy and while we continue to improve we have a long way to go if we hope to be competitive with these teams. It is worth noting that our weekly sessions are for PWP only and we have no competitive matches with any other teams out with this type of event.

In November we have the second Parkinson’s WF competition taking place at Toryglen and this should be a better fit for us as all players have Parkinson’s, but it will still be very tough, noting the lack of competitive matches mentioned above.

After this event in November I will take some time to consider whether to continue with Walking Football as part of my activity regime. I enjoy every minute of these sessions, but during the festival event I suffered a knee injury which kept me from participating in most of my regular physical activities for a couple of weeks. I know some of you will be thinking, he must have been running to get such an injury. This was not the case. I was substituted in the first game after two “running” offences, three is a penalty to the opposition,

I finally took this on board and had no further offences in the remaining games. Finally I was playing “Walking” Football properly.

This is the second injury of this type I have experienced and in addition to the down side physically and mentally of not exercising, this has severely impacted my preparation for some table tennis competitions that are fast approaching. As one of these events is abroad and includes a financial commitment as well as personal commitments to other players, I need to review the injury risk going forward and decide on the best option for my own welfare.

Scottish Parkinson’s International Table Tennis Open

Over the last 3 months I have been part of a small group from the Parkinson’s Scottish Table Tennis Association and Table Tennis Scotland who have been planning the second Scottish TT Open. The event takes place at the Sportsscotland National Sports Training Centre at Inverclyde, Largs on the 9 – 11 of August, and planning is now at an advanced stage. We have almost 90 players registered and 30% of these are from overseas. This competition is shaping up to be a fantastic event building on the success of last year.

Deep Brain Stimulation (DBS)

Finally, I mentioned earlier that I was advised to consider Deep Brain Stimulation as a treatment option, and that this took me by surprise. I had always considered DBS as the final option when the medication available can no longer control my symptoms. There were a couple factors discussed in detail at this consultation. Firstly, I was diagnosed 7 years ago and would probably have had the condition for many years before diagnosis. I should therefore not consider myself as being near the beginning of my Parkinson’s journey, even though many PWP have had the condition for 20 or more years. The medication dose I am now taking is fairly high and it is very likely that if any further increases are introduced the side effects will outweigh any benefits from the increase. Secondly, while DBS is an invasive advanced therapy, it should be considered as an available treatment option at the appropriate time, and if used as a last resort when symptoms are unmanageable the benefits are greatly reduced. In other words, DBS will not reverse unmanageable symptoms, but if implemented before they become unmanageable it can be more beneficial. This is contrary to my previous understanding of the procedure.

I now need to give this some serious consideration and discuss with my family. It is worth pointing out there is a detailed assessment required to determine suitability for DBS, it is not suitable for everyone, and in Scotland there is a 2 year waiting list for the operation.

I think it is safe to say that despite a busy summer ahead this decision will be on my mind constantly.

End