Batman Brian

A Blog by Brian Carson

1 June 2023

All views in this Blog are my own.

Six years ago to today I was diagnosed with Parkinson’s Disease. This was not entirely a surprise as like some people I googled the symptoms before attending the neurology appointment and was expecting this diagnosis. That is not to say it wasn’t a shock and raised many questions. Why me? What are the causes? Is this not an old persons condition, (I was 54 years old)? Is it hereditary? Is my life as I know it over? Etc.

I am sure you can imagine how this affected my mental state at the time. I went from knowing very little about the disease, to probably knowing too much in a very short timeframe after a period of intense research. Three things stand out from the research I conducted into the condition.

1. There is no cure but medication is available to help manage symptoms.
2. The range of symptoms is vast (over 40) and no two people have the same “mix” of symptoms making the pace and effects of progression very difficult to predict.
3. The pace of progression “may” be reduced by taking regular focussed exercise

If I tried to describe the last six years in detail it would fill a book, and maybe it will some day! 

The major points are – 

1. I was diagnosed with Parkinson’s.
2. I retired from work as a result, 
3. Sadly I became a widower after being married for 37 years.

Two major life changing events in a short space of time was difficult to cope with. Sometimes it was very easy to withdraw and on occasions my mental health has suffered as I have tried to come to terms with my situation and if I am brutally honest some days it can be a challenge to get out of bed and face the day. Thankfully the number of days when I feel like that is getting fewer and fewer.

I am fortunate to have such supportive family and friends who have kept me going through a very challenging period.

If there was ever an upside to having this condition it is the people I have met, both with and without Parkinson’s, the community of support both at home and further afield that I have become part of, and the friendships I have made. Most of this has come about through groups that I attend and contribute to and activities I participate in. Sometimes I feel like a Parkinson’s novice as I have friends who have been living with this condition for many years longer than I have, in some cases 20 years plus, and they just keep going to live the best life they can.

The past is very important to how I came to be who I am and where I am today. Yes this is not the life I (we) had planned for and the person I planned to enjoy it with is no longer with us.

It is however the life I have and I will continue to live it doing the things I enjoy, for as long as I physically able, with the friends, family, and the Parkinson’s community who have supported me and helped me to get this far. 

The range and diversity of support resources available for People with Parkinson’s has improved dramatically in the short time I have had the condition and continues to grow. This includes support to those newly diagnosed, an ever increasing portfolio of activities and sports, and numerous support groups in various locations around the country. These resources are being provided through a number of organisations, including the various health boards, exercise and leisure activity providers, and great charities like Parkinson’s UK.

There are also some really positive research projects being progressed that will provide additional support in the next few years. Not necessarily a cure although we live in hope, but medication that will provide more help with managing symptoms, and in some cases reduce the side effects of some medications currently in use. When available these products will further improve the quality of life for PWP.

I have no idea what the future holds for me personally in terms of progression. 

I have said previously when discussing my condition in presentations to various groups that Parkinson’s is life changing not life ending. That is a very important mantra to me personally as I face up to the next 6, 12, 18 years, and hopefully beyond.

What I can say is in my future is continuing to volunteer with the various Parkinson’s groups and organisations that I enjoy being part of and contributing to. And of course continuing to be as active as possible, yes this means more and hopefully better table tennis 🏓, walking (sometimes running) football ⚽️, golf ⛳️, Pilates 🧘‍♀️,  PD Exercise 🏋️‍♀️ , cycling 🚴‍♀️, socialising 🍺, and travel ✈️😎.

Parkinson’s – never give in💪.

End