As an end post to the mini awareness project I have been running around the April 11th Worldwide Parkinson’s Awareness Day, I wanted to address what has probably been the most outspoken element of the coverage. The story that garnered probably the most publicity was a quote from the famous British news and TV personality Jeremy Paxman when he stated in an interview with the Times of London that “having PD made you wish you’d never been born”.
For obvious reasons, it has caused a huge amount of controversy and a number of people have asked me about it and I don’t doubt that a lot more haven’t. Some people even sent me the article and then apologized for sending it noticing what it actuallly said.
So here is my take…
Firstly, how someone feels is how they feel and in that context how Jeremy Paxman feels is entirely his right to express himself. I respect Jeremy Paxman hugely and I don’t underestimate his point of view. Secondly, this has done a very important job of raising awareness of the issue of Parkinson’s and some of the lack of help patients in the UK and elsewhere experience. For the second point I am very grateful.
I do however, have a very different view to Jeremy and although only a miniscule number of people will read what I have to say, I think it is important that not everyone with PD shares this view and I certainly don’t.
I don’t like Parkinson’s…let me be clear…it is life changing, all encompassing, constantly changing and progressively advancing. Every day can bring news turns and twists and the constant stamina required just to do the basics (to stay in the game) is intense – exercise regime, diet, avoiding falling/choking, constant need to medicate (for me now it is 18-19 pills daily), weekly treatments, and the regular muscle pain is not fun. I have already had to make big life changes including work related ones to accomodate PD and at 48 am forced to use a cane to avoid the balance and freezing issues I often suffer from. I also know it is and will continue to get worse with time and that is a more than depressing thought at times – knowing with relative certainty that the future is going to be full of pain and disability is really destabalizing.
But……there are four fundamental reasons why I don’t agree with Jeremy’s world view (although as I said he is fully entitled to his perspective)
- I have already more than achieved enough to be grateful for having been born. I have had a fantastic 48 years on balance, I am blessed with an amazing wife and three beautiful children/young adults and I have had the chance to contribute to and benefit from many amazing facets of life.
- Despite the pain and aches, I have found the way to manage Parkinson’s to this point (4 years in) to the point that I still live a broadly very fulfilled life and fully intend to do so for as long as I can. With all the efforts I put in and a positive attitude I have a great life and am grateful for every moment (well maybe not every moment :-)).
- I don’t like to compare myself to others but it has to be said that everyone ages and the vast majority of people have negative aspects of life – for some it is physical, some it is emotional, some it is financial and for most it is a complex mix of many things (often to do with family members and loved ones)…if Parkinson’s is my main ‘thing’ then so be it….it could be worse (physical ailments are often less severe than emotional challenges)
- I have faith and believe there is a reason for everything. For that reason I don’t believe that it is random I got PD and that if I have been given it, I also believe it is for a reason and I have the capability to rise to the challenge.
For all of the above highly personal reasons, I absolutely am pleased I was born and will fight everyday to stay in the game for as long as I personally can.
Jeremy raises through the coverage many interesting topics but the one I would dwell on is for anyone entering the PD arena as a new patient or a close relative/support person of a PD patient.
There are many things you can do to make the journey less hard than it has to be and I set out some of these in a guide I wrote for newly diagnosed patients – https://benlazpsp.com/2024/03/12/asserts2/
The chief one of them is Attitude which is directly linked to the topic. As well as hundreds of resources out there I wrote a little piece on this topic – https://benlazpsp.com/2024/04/09/every-day-is-parkinsons-day-attitude-is-a-big-deal/
Bottom line – an expression my aunt told me when learning of my diagnosis knowing a close friend who has struggled with PD for years – It is s*** but it is manageable s***. It is not what I wanted to deal with but it is what it is and as a purely personal choice I accept it and now fight as hard as possible to live with it and prolong life for as long as I can.
I salute – genuinely – Jeremy Paxman. He is a brilliant man who I very much respect and listen to on the podcast Movers and Shakers. He is doing amazing work (far more than me!!!) to raise awareness and funds for the disease. I personally have another view and wanted to share it.
