Batman Brian

A Blog by Brian Carson

Dec 22

The blog below was written in September this year. At the time of writing I was not coping well with my Parkinson’s. I had convinced myself that despite all the Parkinson’s focussed activity I have been involved in, deterioration as my condition worsened was inevitable. I began thinking that all the activities I participated in helped to promote would not make any difference.

Looking back now I can see how I got to this point as a series of issues and events, most of which in isolation probably seem minor everyday things, but cumulatively over a short period caused me to question my focus on dealing with my Parkinson’s.

In writing this blog at the time I took a major step in recognising I needed some help, and shared this with those closest to me.

I was not convinced I would ever publish this blog but now that some months have passed and I am much more like my old self I have decided to share this as it may help others who are or have been through similar experiences.

Is it OK to not be OK?

Written 11 September 2022

This is by far the most difficult blog I have written to date as it describes some recent struggles I have had coping with my condition. I have thought long and hard about publishing this as it contains some very personal information. If I do publish it will be sometime in the future when I am hopefully feeling much more positive. I do think it is important to share the down side of my condition, especially if it may help others with similar issues.

In recent blog I have mentioned some of the non-motor symptoms that are associated with Parkinson’s Disease and the impact these can have on the Person With Parkinson’s (PWP). Motor symptoms tend to be noticeable to most observers but non-motor symptoms are not generally visible and in most cases only the PWP is aware of these unless they choose to share this information.

The specific symptoms I am referring to are depression, anxiety and apathy, all of which are recognised Parkinson’s symptoms. I will attempt to describe how I have been affected recently by various events and the impact I have experienced. At this point I should remind readers the list of Parkinson’s symptoms numbers in excess of 40 and each PWP has a different permutation of symptoms.

My most recent blog was about the UK Parkinson’s Table Tennis Championship held in August, and the excitement and engagement of helping to organise and play in this event. The planning for this event started in March this year and this provided a focus for me as part of the Scottish Parkinson’s Table Tennis association in addition to all my usual activities for several months.

However, a few days after the event as everyone returned to daily routines I felt a bit “flat” and put this down to missing the buzz and activity of the previous few months. The following week I attended a funeral of a friend and found myself heading towards a new low as I got immersed in the sadness of the occasion.

Since the loss of my wife last year I have found the funerals I have attended to be emotionally draining on a scale I have not previously experienced. Not only do I mourn the deceased we are gathered to pay our respects to but I also get overwhelmed with my own sense of loss.

When Christine my wife of 37 years passed away last year the sense of loss was overwhelming. She was not only my wife, but also my friend, my partner, my companion, my conscience, mother of our children and the gap in my life without her is too painful to describe.

This may sound selfish but as I am a PWP Christine was also my “carer” and we had discussed many times how she would be around to help me as my condition deteriorated to a point when I would need constant help. With her passing I now have to face whatever comes with my Parkinson’s without her by my side. There are times when this is overwhelming, and the loss and loneliness become unbearable. Yes I have my son and daughter who have been incredibly supportive and continue to be but they cannot be with me 24/7, nor would I want them to be as they have their own lives to lead.

Additionally, as I write this blog I am on day 5 of a forced rest period due to a physical injury. In terms of my Parkinson’s this should not be a major issue but mentally this is a real challenge for me. I am always thinking that each day with no activity is an opportunity for my Parkinson’s symptoms to progress and get worse, and that any progression may not be recoverable.

What I am trying to describe above is a set of circumstances, that when combined with some recent personal setbacks, have driven me to a very low place in recent weeks that is unfamiliar to me. This has resulted in the symptoms of depression, anxiety and apathy becoming more dominant.

How does this affect me?

Firstly, I get anxious when I think too far ahead and create scenarios in my head of what my future might look like as my PD progresses. This is not conducive to a healthy mind but I find it very difficult not to think this way. I have a degenerative disease for which there is no cure and the last real medical breakthrough for this condition was 50 plus years ago when Sinamet was created, a drug that most PWP still take today.

In my opinion there is no chance of a cure being found during my lifetime. That is not a criticism of the incredibly dedicated and talented people who are researching and striving to find a cure. It is just my view and expectation.

Then I start to question the very active lifestyle I lead and that I was convinced is helping to slow down progression of my symptoms. Is this really the case? Yes I have had improved movement scores at my last 3 medical reviews, but can I produce empirical evidence that all this activity is the reason for this. No I can’t. Is it all in my mind? This breeds apathy. After a night with only 1 or 2 hours sleep (another PD symptom) do I really want to drag myself to a table tennis table or a football pitch to take part in an activity that I know is good for my overall fitness but that I cannot prove is helping my PD? Why bother when I feel exhausted?

So now I am anxious about what the future holds, have lost my drive to do something about it and depression sets in.

Again this is not a criticism of the fantastic work being done by the PUK Scotland Parkinson’s Active Team. Against all odds this small group have introduced a fantastic network of Parkinson’s focussed activity with various providers across Scotland and I have been very proud to be involved with this team.

Those of you who know me or have read previous posts will be familiar with Batman Brian, a persona I have created to get activity for PWP publicised and to encourage other PWP to get active. This makes me sound like a bit of an activity junkie who is on the move all the time playing sport, volunteering, doing interviews, competing in competitions, and getting a positive message out to the Parkinson’s community. Most of the time this is who I am, who I want to be and who people expect me to be.

The effort in maintaining this pace and this “front end” of who I am can take a toll which is where I currently am mentally. No one can keep this pace constantly and coupled with the thought of facing whatever comes my way in terms of facing my PD progression on my own is a daunting prospect.

Despite all this going on I have continued to get up each day and turn up for my usual planned activities, meetings, catch ups with friends etc etc, as I don’t want to let anyone down, and if I am honest I don’t want to be seen as failing to cope with my PD. But turning up and being me has been getting more and more challenging each day although deep down I think I know this is the right thing to do while I try and get some help.

So where do I go from here?

Thankfully I was able to recognise this dip and have spoken with close friends and family, who have been phenomenally supportive.  The Parkinson’s community around me is also an incredible group of people some of whom I count among my closest friends, who are supportive and caring and have a wealth of experience of all things Parkinson’s,

This support and encouragement as well as the advice to seek help has been very comforting although I do confess the “seek help” bit did not sit well at first but I now understand that this is not a sign of weakness but a sign of strength in being able to admit I need help.

To answer the question in the title of this blog, of course it is ok to not be ok. This is a fact of modern life that we will all have to deal with at some point. The important thing is that if you realise you are not ok or someone else tells you they think you are not ok, be strong enough to seek help.

For me personally I think I am moving in the correct direction but still have a bit to do. If I feel it is appropriate, I will share some details of the help I have sought in the near future.

End of 11 September Content.

Dec 22

At the time of publication I am in week 2 of recovery from a hernia operation. Recovery includes a 4 week spell of no sports activity to ensure minimum opportunity for a recurrence of the injury. This is difficult for me to deal with when I consider what I need to be doing physically daily and weekly to manage my Parkinson’s. However, I am coping well as I realise and understand I need to play the “long game” in this situation and not get hung up on the potential impact of a few weeks down time from activity. I also want to start 2023 injury free and get back to my routine without issues.

Yes I am missing the activities, the social, physical, and mental benefits they provide, as well as the fun, but compared to how I felt three months ago after 5 days of no physical activity plus a number of other issues, I am so much more positive about getting back to my routine.

January may feel like a boot camp as I attempt to get back to fitness, and lose a few pounds, but bring it on. 🏓🏃‍♀️🏌🏻‍♂️🏋️‍♀️⚽️🧘‍♀️🚴‍♂️

Brian Carson