Batman Brian

A blog by Brian Carson

11 May 2023

All views in this blog are my own.

My Parkinson’s Table Tennis Adventure continues (Part 1)

I have had a very busy few months where I have taken on some new Parkinson’s responsibilities in addition to my usual physical activity, local volunteering, and playing sport. This has been very rewarding, interesting and challenging and I am grateful for the opportunities I have been given to contribute.

Recent Activities 

I have also been involved in setting up the Scottish Parkinson’s International Table Tennis Open which takes place in August and I will cover this in later blogs.

However, table tennis is my focus for the next couple of weeks and it has been too long since I bored everyone with a blog.

After a week at home following the brilliantly organised and executed Eystrup competition it is great to be back on the road again heading for the Veterans event in Stockholm.

Eystrup

I can never overstate the great experience we had in Eystrup and again I say thanks to Lars Rokitta for his commitment and passion which shone through at that event.

With Lars in Eystrup

Travel

I have written previously about my nervousness travelling with PD and this trip is no exception. I had a recent Facebook discussion about travel with some others who are living with PD and it turns out I am not alone in these feelings. However we all had the same attitude that while travel is not something we enjoy we will continue to do so while we physically are able, as the reasons for travel are not something we want to give up on yet. For me it’s holidays, table tennis events, sightseeing and spending time with friends. Hopefully I am a long way off from having to cease or even reduce these activities.

Today I am heading to Stockholm via Heathrow. A direct flight is easier to manage but recently the destinations involved have the complication of a flight change as direct options have not been possible.

Eystrup was a prime example where a change at Amsterdam was needed but this was made much easier as I met up with Cecilia and Torgny from Sweden in Schipol and we travelled on to Germany together. This proved to be fortunate on the return journey as Torgny was injured during the competition and travelled mostly in a wheelchair. We were able to help him get through Bremen and Schipol airports although I wonder what other passengers made of us as we three PWP shuffled around the airports, one of us in a wheelchair. But we made it by supporting each other and had a few laughs along the way. Torgny definitely should have had Learner plates on his wheelchair.😂

Sweden

So I am en route to Stockholm to play in the second Veterans Open which for the first time has a Parkinson’s classification event included. I am grateful to Pelle Hanglund (aka Py Tagaros) for the invite and for facilitating my registration.

The competition is being held in Tammsvik which is an hours drive  north west of Stockholm and we will move to the area on Friday evening for two days of play Saturday and Sunday. All players are staying at a conference hotel near the venue and we have a dinner planned for Saturday night as as a group. 

The Venue

We have players from Sweden 🇸🇪 Germany 🇩🇪 Portugal 🇵🇹 Norway 🇳🇴 USA 🇺🇸 and Scotland 🏴󠁧󠁢󠁳󠁣󠁴󠁿, and I will say Finland 🇫🇮 (Seppo – Swedish or Finnish? 😂)

My potential singles opponents.

I am playing Parkinson’s singles and doubles and a banded singles for all players ( Vets and Parkinsons)

On Friday we are playing a mixed doubles event at the Sparvagens BTK Table Tennis club in Stockholm where Pelle coaches a weekly Parkinson’s group.

My preparation has not been ideal as I have been resting for a week with a knee injury but that won’t affect the enjoyment I will get from playing and socialising with these fantastic people.

Readers of previous blogs will know, but I will say it anyway, the benefits of this type of activity for PWP are not only physical, there are also social and mental benefits from the non playing activities not to mention the peer support we provide for each other.

What Next

I will remain in Stockholm for a few days after the competition for some sightseeing and socialising.

I will post competition updates on Facebook over the weekend, and next week write a summary of my experiences before I start Part 2 of this adventure. 🏓💪

End

A Blog by Brian Carson

5 July 2022

This event took place in Cascais in Portugal.

The short blog details my experience at this event, what I, and I think all of the People with Parkinson’s (PWP) playing, got from the competition and what we expect to do next. I have used a lot of photographs in this blog as I think they describe the experience far better than my words. Apologies to those who are not in any of the photographs, there were just too many to include them all.

The competition was the brainchild of Damásio Caeiro and he has been dreaming of holding the first Portuguese Open since he attended the first Parkinson’s Table Tennis World Championship competition in New York in 2019.

Taking on this responsibility was a major undertaking and at times the strain has shown on Damásio as he dealt with issues and problems up to and during the event.

Some things went wrong some things were very good and some things were in between these two extremes. I am not going to dwell on these things in this blog as we who attended understand the challenge in holding this event, and Damásio has already starting working on what can be improved to make this event even better in 2023. I hope he gets some good support to arrange the next event as we want to see Damásio enjoying the experience with us, playing table tennis to the high level we all know he is capable of, and not in the role of planning and administering, as this is not his strength. He is a writer and a poet, not a project manager, although what he may lack in project management experience he certainly makes up for in his passion and commitment to this event, his TT Club, his home town, and the wider Parkinson’s Table Tennis Community.

The Location

Cascais proved to be a beautiful part of Portugal and lived up to everything Damásio said it would be. On finals day we had a later start as a sightseeing tour was arranged for a couple of hours to let us experience the full beauty of the area. We visited Devils Mouth – Boca do Inferno and drove along the Estrada Do Guincho to the Praia Pequena do Guincho. Which were areas of natural beauty and breathtaking to see.

We were located in three hotels around the area and travelled by coach each day to the competition. But this was not the only time we seen each other as a group. We came together in one of the hotels most nights to socialise and continue developing our friendship, despite some language difficulties these get togethers proved to be a key part of the experience.

The Event

We had a short opening ceremony with a local music group leading the players into the arena to assemble together to hear an event opening speech, followed by a brief explanation of the competition rules. I was given the honour of leading the players in this procession as I was the first player to register for the competition. I was also the sole representative from Scotland.

Compared to other Parkinson’s TT competitions the number of players at the Portuguese Open was small. Approximately 40 players from 12 countries took part. This was smaller than hoped but taking account the number of competitions now taking place and the travel and expense involved to get to the host countries, this number is a success in my view. PWP are choosing what is best for them not only based on travel and expense but also the need to factor in the level of their Parkinson’s and how they manage their treatment regime, their family and home commitments, and in some cases their employment.

We played TT for three days in this event. Three fantastic days where we won, we lost, we got tired, we got elated, maybe a little “off” when medication was not quite working, but the smiles and support and togetherness were always present.

This was a sporting event where the sport was secondary. The priority was being together as a community, sharing the common bond that we have through Parkinson’s, but more importantly being together, supporting each other, laughing together and crying together. I have never been one to show much emotion but as I attend each of these events I surprise myself every time by becoming more and more emotional as the depth of feeling I have for this community and this sport grows.

I will never forget the emotion shown by Damásio as he spoke at the presentation ceremony about his competition not being everything that he hoped for, only to be told by the players, families and officials in one voice that he had delivered a great event.

Nor will forget how my great friend Lars Rokitta and I held each other and cried after the presentation ceremony as we realised what we had just been part of, what our friendship means and our commitment to help this community through table tennis and any other means available.

After the presentation ceremony concluded we were taken to a local club, the Groupe Musical e Desportivo 31 de Janeiro de Manique de Baixo. Here we had a meal prepared by our hosts of local Sardines and meats served with lots of wine and accompanied by music and dancing. A great conclusion to the event.

What Next?

We now all return home to our “normal” lives, managing our Parkinson’s as best we can, play table tennis, and spread the word about exercise and in particular table tennis, and what it can mean for PWP. As I write I am travelling home from Portugal and this very evening we have a webinar taking place where Table Tennis England, supported by the Parkinson’s UK Scotland Parkinson’s Active team are encouraging TT coaches around the UK to become involved in bringing table tennis to more PWP.

For most of the players who attended this event the next focus is the Parkinson’s World Table Tennis Championships taking place in Pula in Croatia in October. For those in the UK we have the small matter of the UK Parkinson’s Table Tennis Championship’s taking place at Drumchapel in Glasgow on 7th August. This is only the second time this event has been held, the first time in Scotland and we at Parkinson’s Table Tennis Scotland are very proud to be hosting this competition. It is fully subscribed with all player slots taken. This will be another opportunity to come together as a community and further the cause of TT for PWP while having fun. I look forward to catching up with many friends at this event.

Parkinson’s Symptoms and Treatment.

I would normally include some information in these blogs on some of the 40 plus Parkinson’s symptoms, treatment and management of these and the benefits of exercise. I have excluded these for this blog only as I do not want to detract from trying to describe the fantastic experience at this competition. Normal service will resume in my next blog.

End

Brian Carson

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:

1. To help PWP
2. Connect with the Scientific Community
3. Achieve Paralympic status and participation 
4. 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

A blog by Brian Carson

17 May 2023

All views in this blog are my own.

I have just left Sweden and have written a short blog on my experiences during my time there.

Travel Complications

As advised previously I arrived in Stockholm for this competition late afternoon on Thursday 11th May. Unfortunately my luggage did not as it was left behind in Heathrow airport having missed my flight connection. Luckily there were a few later flights that evening and I was reunited with my luggage at midnight after a worrying few hours. 

Who knew I could get so upset over a missing table tennis bat or that I would be so happy when it finally arrived. I did thankfully avoid the schoolboy error of lost Parkinson’s medication as I always carry this in hand luggage, no matter the length of trip and quantities involved. The potential impact of not having my medication available is just not worth the risk.

Despite the lost luggage worry it was a casual start to the trip with a leisurely dinner and a beer before the long wait at the hotel for the midnight luggage delivery.

Friday

The weekend competition schedule was quite full and as a result there was no time for a Parkinson’s mixed doubles competition. Coach Pelle remedied this by arranging a pre tournament practice and an unofficial mixed doubles competition at Sparvagens TT club on Friday afternoon.

This was a gentle introduction to the weekend activities and a chance to catch up with everyone as they arrived. It was also nice to visit and play at a club that is home to so many of my  Swedish friends that I have only read about and seen in photographs. We had a great afternoon and some of the regular non Parkinson’s club players took the time to practice with us.

At Sparvagens TT Club

All together at Sparvagens

The dinner that never was!

After the session at Sparvagens and before we relocated to Tammsvig, an hour north of Stockholm, 12 of us had arranged to have a dinner together. On arrival at the restaurant the staff advised that as we were a large party the wait for food would be around 45 minutes. This was not seen as a problem and we had some drinks and snacks as we caught up and looked forward to the weekend. However, 45 minutes turned into 90 minutes and when the food finally started arriving it was one plate at a time and at some point we realised there were three dinners “missing”, including mine. When challenged, the staff showed no remorse and viewed the problem as our fault for being too large a group. We decided to cut our losses and leave to make our way to Tammsvig, and on arrival discovered it was too late to have any food prepared at the hotel. So early bed for me with no dinner, and it was pointed out to me once or twice that I could benefit from missing an occasional meal.🙁

Too many for dinner?

Saturday – Sweden Veteran Open Day 1

The event location was in Kungsangen, a 15 minute commute from Tammsvig by minibus.

The Parkinson’s events Early start as first matches kicked off at 09:00. Mens doubles first and in a very tight group Seppo Mäkinen and I topped the group after a sets and points count back. We qualified to play in the knockout round on Sunday. 

I have known Seppo since we met at a training camp last year and he is always fun to play with as he has a quick wit and makes me laugh with his comments during matches. Thanks to his son Sami for taking some great photographs during our matches.

In the afternoon I played in a men’s singles group of 4 and came second to progress to the singles knockout round also on Sunday.

After such a long day it was nice to relax at the event dinner and enjoy some very nice food, a few drinks and continue to socialise as a group.

Sunrise at the hotel, the venue, and a tight doubles group. (Look at the score)

Sunday – Sweden Veteran Open Day 2 (final day)

Another early start and it was straight into the doubles knockout round.  Probably should have been in bed earlier on Saturday night but the event dinner was good fun.
Another early start and it was straight into the doubles knockout round.  Probably should have been in bed earlier on Saturday night but the event dinner was good fun.

Seppo and I caused an upset in the doubles quarter final defeating Damasio and Maik 3-1. No one saw that coming including us but we were worth the win. 

After the quarter final

We then played Lars and Hamid in the semi final but they were too strong for us.

Seppo and I with Lars and Hamid

Next it was knockout singles and I lost the match to a Swede who was just too good for me.

Relaxing between matches

During the group matches it is standard practice for the non players to umpire some matches. Umpires are identified on the group match schedule and this ensures the load is evenly distributed among the group players. I was also asked to umpire some Parkinson’s ladies doubles matches. I have commented previously during other competitions I found this additional role both tiring and stressful. However the atmosphere at this event was much more casual and I was happy to do this for a few matches and enjoyed the experience.

In the afternoon I started playing in the handicap singles but had to withdraw after one match due to my transport leaving for Stockholm. A bit disappointing especially as I was given a generous handicap of +8 😂.

I had a great few days with old and new friends and the positive attitude of everyone involved is infectious and makes these events special and enjoyable.

A great facility and well run event in a friendly atmosphere. Kudos to the organisers of the Veteran Tournament for including the Parkinson’s events for the first time.

Monday/Tuesday

I spent Monday and Tuesday out and about around Stockholm and seen some famous and some not so famous landmarks. A busy couple of days with a lot crammed in but I enjoyed the experience. On Monday evening I took the train out of the city to Rotebro to have dinner with Lin, Peter and Damasio, and we had a very nice evening together.  

They say bad things happen in three’s and after the missing luggage and the dinner without dinner, I still had strike 3 to come. It arrived on the way back into the city from Lin’s by train. I fell asleep and missed my stop. On waking up I had a very confusing few seconds as I my brain tried to figure out what I was doing on a train with non English words on all the notices. 🤪  Fortunately I was able to get off at the next station and find my way to the hotel through unfamiliar territory. 

A Sunday evening beer by the river 🍺

A thoroughly enjoyable trip to Sweden. Thank you to all involved in making me feel so welcome.

Now onto the next phase 🇩🇪

End.

A blog by Brian Carson

Background

In my last blog I mentioned having an enforced break from physical activity while recovering from a hernia operation. As expected this was a difficult period for me personally and probably for those around me as they had to put up with my grumpiness about not being able to exercise. However by planning things to do other than exercise and having a positive attitude about my eventual return to activity, I managed to get through the down time with no real issues. It also helped that my down time was across the Christmas and New Year period when a lot of the organised activities I am involved in were unavailable during the holiday period. I certainly coped much better than I would have 3 months earlier when I was not managing my Parkinson’s so well, and struggling with my motivation to keep active.

My Route to Fitness

When I left hospital on 9th December following the operation I was advised to be as mobile as possible but take no exercise for 4 weeks and not lift anything heavier than 2kg  during this period.

Within 2 days I was out walking but felt this was too risky because of the cold weather and ice. A fall could cause considerable damage so soon after surgery, therefore an alternative was needed.

Plan B was using a treadmill. I started daily (almost) 3k walks in the warmth and comfort of home. This kept me ticking over and feeling more positive about my recovery and the route back to the fitness levels I had before the surgery. Not to mention helping with the weight loss needed to get back to where I was previously.

Ten days after the op I went along to the weekly Parkinson’s Table Tennis session at Drumchapel Table Tennis Club. This was the last session of the year and we had a lunch party planned after the session. It was difficult to watch the session and not play and I eventually picked up a bat and hit a few balls, but just from a stationary position. From this point onwards I was itching to get back to playing TT.

I wasn’t as active as I should have been in the days immediately before and after Christmas (probably the same as most people). However, a few days after Christmas I attended a regular non Parkinson’s session at Drumchapel. I was sensible enough to hold back a bit in this session but it felt great to get back on the table and I had no issues during and after the session.

I continued to attend any available TT sessions over the next week and progressively increased my movement and effort at each one.

Four weeks after the surgery the doctor conducted a planned review and gave the go ahead to get back to my full activity routine. I didn’t share with him that I was probably up to around 50% of my previous routine activity by that time. Ahead of schedule but I had managed this carefully with minimal risk.

Next Steps

Fortunately this go ahead was given the week when all activity sessions got back to normal post the Christmas break. Now that I was officially “off the leash” there was no stopping me. That week I played table tennis (4 sessions)🏓, attended a PD exercise class🏋️‍♀️, and a Pilates class 🧘‍♀️, played walking football ⚽️, and even had a session on the driving range 🏌🏻where almost every ball was straight and long, although that will not last 😂.

I enjoyed every minute of every session but did get tired quickly sometimes, due to my lack of fitness. I appreciated that fitness would improve in time but being a bit impatient I decided to condense some activity over a week to help things along.

I opted to spend a week abroad in the sun at the end of January, cycling, running and walking, and enjoying the added bonus of some winter sun.

I set myself a daily schedule of cycling in the morning and running or walking in the afternoon. I managed to keep to this although by the end of the week I replaced the running with longer walks due to some knee pain. This sounds intensive but in reality I had time to have a leisurely lunch and catch up on some reading each day between sessions.

Exercising everyday is a challenge as there is not much recovery and rest time if there are zero days off. However over such a short time this was manageable and I had a few days down time for rest on my return home before getting back into my activity routine.

There was a downside as I was not able to play table tennis while I was away, (couldn’t find a table anywhere) and beer consumption for the week was probably a bit much from an exercise perspective. 

However taking the big picture view, I had a great week in the sun, got some exercise and had some fun, and am confident that I am much fitter than I was the week before.

I have also had some great thinking time to consider what I do next. This included my activity routines, what table tennis events I want to play in this year, and what Parkinson’s activities I would like to be involved in. I will hopefully have more to say on this in a few weeks.

Activity and Parkinson’s 

My friend and fellow PWP and TT player Steve Morley, recently published a blog titled “Why do you Train?”.  This describes some discussions he has had on what motivates PWP to participate in physical activity. See quote below:

If the answer to the question Why do you Train is “to beat PD” then sooner or later I believe you will fail. You need a better reason to train: to run a faster 5km, to cycle 100km, to do an open water swim, whatever gets you excited. Then you will feel motivated to train despite PD, not because of PD.”

I agree with the first part of this statement in that we can’t beat PD as there is no cure, and if that is a motivation for activity then you have failed before you start. 

However on the second part of the statement my view differs very slightly. My motivation is not to achieve faster times, longer distances etc, I see these as a by product of the activity. Yes if I am playing table tennis or football etc I am competitive and play to win, but that is not why I exercise.

My personal motivation to exercise is to have a level of fitness and movement that will allow me to “manage” my Parkinson’s for as long as possible on my terms, maintaining my quality of life. To do this I participate in activities that provide benefit, that I enjoy and have fun doing, and yes sometimes I do push the boundaries to improve. Remember, it’s not just physical benefit we get from these activities, but also mental and social benefit, which are also very important, but that is a discussion for another time.

I am not ignoring medication. I view medication and activity both as vital contributors in helping me manage my condition.

Awareness of Parkinson’s

I get a lot of encouragement and feedback to my blogs and posts about my motivation for what I do. Sometimes words and phrases are used that while are encouraging and supportive, make me realise that there is much more to do in raising awareness in the non Parkinson’s community of what this degenerative disease involves.

Most people outside the Parkinson’s Community have a view of what Parkinson’s looks like but don’t understand the complexity of the condition. For a lot of people the belief is that if you have Parkinson’s you will have some form of tremor, possibly stoop a bit, and be a bit slow walking and moving.

There are more than forty symptoms and as mentioned previously PWP have different combinations of some of these symptoms. It is important to realise that a lot of these symptoms are non motor and are therefore not visible. See my previous blog on Depression, Anxiety and Apathy, to name but a few.

Despite this it is possible to live well with this condition and many people do.

The illustration below is the perception some people have of Parkinson’s.

This is not me!

Note: Saying “we can’t beat PD” while true sounds very defeatist. I have stated in other forums that having Parkinson’s is not life ending, but is life changing. My personal view is that with the proper support and advice it is manageable for most people and that is what we strive to do.

Hopefully that message is what most readers will take from this blog.

End