Fighting Parkinson’s depression and finding a role in life.
A personal look at strategies for coping by a volunteer.
The well-known saying ‘ Life begins at forty’ has more than a grain of truth to it, but in my case I was two months shy of fifty-one years of age when my life changed from what G. B. Shaw called ‘A life of quiet desperation’ into something with a worthwhile purpose.
The date: June 2011. The meeting: The Swan Hotel, Market Harborough (near Leicester). I had been invited along with my wife to listen to a talk about setting up a research support network based in the east midlands. This would be a volunteer-led network run by a steering group which would, well, steer the group in a direction that would try to identify and publicise the science available.
I put my name down out of curiosity, thinking I would see what became of it then go back to my insular life. Now here we are in 2018 five researchers meetings and six annual forums later. Five years as steering group secretary followed by two years as (and still) chairman. It is fair to say that in this period of time we have been unconventional and tried different ways of giving useful information to the PD community – first through a newsletter online and now a blog. Many have liked the articles we have come up with as well as our events (case in point our latest forum in November last year got exceptional reviews, with much of the feedback praising the event as the best forum they had ever attended).
So, how do we top that? WE TRY!! That is my philosophy in a nutshell. There are no guarantees in life and in fact, getting it wrong occasionally proves you pushed it to the limit. If you never had a failure it’s because you stayed in the comfort zone; and if mankind had always done that our present state of technology and worldwide achievements would not have happened. Is it easy after years of practice? NO! The innovators achieve new wonders and, as they accept the appreciation from others, one eye is already looking toward the next horizon and thinking about what may lay behind it.
Parkinson’s is a subtly-shifting moving target inside us and we have to evolve with it to get the maximum possible use out of what we have got. It is now sixteen years since I first noticed something wrong with my mobility and over that time many things in life have become more difficult. The worst part of PD is that anxious sense of dread that lurks in the shadows of our minds, as though we can sense disaster looming but don’t know when or how it will strike. I nearly crumbled mentally after diagnosis even though by then I was struggling to work and knew what it must be that had afflicted me.
I lost weight, struggled with energy for work, limped quite badly and had a frozen shoulder that made simple things like changing gear an agonizing ordeal. Fear stalked me and the future looked bleak.
I ditched the medicines and counselling after a few months. I gave up that side of things and built my own shelter inside my imagination, because I came to realise the power to cope comes from within. I stopped denying Parkinson’s and invited him in, remembering the words of boxing legend Joe Louis saying of an opponent ‘He can run but he can’t hide.’ Parkinson’s was trying to bully me and I had enough of that and took him on in the boxing ring in my mind. The more he hit me the more I shouted back ‘Come on Parky, hit me…. HIT ME! Is that all you’ve got?’ Once or twice he put me down but I got up and hit back. In the fictional final Rocky movie when Rockys’ son complains about life being tough, Rocky gives him this little gem of attitude, ‘ Life’s not about how hard you can hit, it’s about how hard you can get hit and still keep moving forward; that’s how winning is done!’
Winston Churchill was another masterful motivator: Giving a speech at a university and being short on time he stood up and said ‘Never give up! Never give up! Never, never, never!’ What a profound message to the students that were there that night!
know many of you reading this will watch and enjoy soap operas on television such as Eastenders. At the risk of being sued or shot, I recommend avoiding dramas like that as the mood is bad, the characters are perpetually disagreeing/ hating/ double-crossing each other and any time something good happens to a character it rapidly turns into a disaster. Compare this unpleasant attitude with the inspirational speakers above. I don’t know about you but putting sunshine into my brain is much better than adding further torment.
Bruce Lee the iconic martial artist was a philosopher and many of his sayings were perfect for inspiring action. I am going to say something that sounds crazy but bear with me: Positive thinking is always mentioned in seminars and is touted as the thing to do to improve life. I say DON’T WASTE YOUR TIME WITH IT! Positive thinking accomplishes nothing; it’s DOING that gets things done! As Lee said: ‘If you spend too much time thinking about a thing, you’ll never get it done. Make at least one definite move daily toward your goal.‘
There are many people out there with good minds (especially Parkinson’s people) that waste their contribution to the human race because they lack confidence and talk themselves out of trying to do something. When you have a good idea and your inner voice tries a thousand ways to talk you out of it, mentally picture it coming from your radio. Picture yourself turning the radio off, then get up and go and do what you was thinking about. If it works that’s great! If you fail you have learned how not to do what you was thinking about. Remember my philosophy? Just add one word to it and we get ‘WE TRY
Look at the lists of people that made a big impact on our world. Generally they experienced more failures than other lesser mortals. So how did they achieve so much more? Because other people failed and gave up while the successes of this world picked themselves up and got on with TRYING AGAIN! It is said that when Edison invented the lightbulb he tried over 1,300 filaments before he found one that worked! In reply to being called a genius he said ‘Genius is 1% inspiration and 99% perspiration.’ He ultimately succeeded because each failure was one more thing out of the way that did not work and if he kept going sooner or later he would find the one that worked. The lesson to be learned from him? Never give up as Churchill said. Bruce Lee had his own take on this as well when he said this; ‘Don’t fear failure. — Not failure, but low aim, is the crime. In great attempts it is glorious even to fail‘
The title of this article talks about fighting depression. My personal experience above works for me, but how about you? We have talked about avoiding prevarication and the value of doing something rather than just thinking about it. Picture things in your imagination and you will find your subconscious acts on it as if it were real. Athletes in various sports have had brain scans where they were asked to imagine they were playing their sport while they lay motionless in the scanner. Brain activity showed the same patterns as when they were playing for real. This is VERY IMPORTANT to remember! Feed your brain good thoughts, confident thoughts and imagine getting ahead and your brain will believe it and you will feel much more content regardless of what is happening in your life.
Can/cannot do lists: Many recommend dealing with PD by making two lists: A can do list and a cannot do list. I disagree: It is better to think of a can do list only. Make out your can do list and every few months make out a fresh can do list. This way your mind is not thinking about things you cannot do anymore. Remember the saying ‘If you tell someone NOT to think of a pink elephant what is the picture that comes into your mind?’ That’s right, a pink elephant. So, ignore the past and current things you cannot do and keep your mind full of your can do list.
Confidence: Whenever I set out to do something I do not have any doubts in my mind that it will be done. If I fail I try again with a modified attempt and I continue that way until success is achieved. NEVER DOUBT YOURSELF. If someone somewhere has done what you are attempting then you know it is humanly possible. On the other hand, if you are trying something never done before, imagine how good you will feel when you succeed!
Feeling unable to keep going: When your mind starts to back away from life and you feel the overwhelming urge to quit what you are doing ask yourself ‘ What was it that motivated me to start this in the first place?’ If the genuine passion was there at the start think about it and rebuild your resolve. Henry Ford said ‘ If you think you can, or you think you cannot, you’re right!’ So look at your can do list and know you can do it.
Purpose in life: In my pre-Parkinson’s life I was a bad-tempered, workaholic money-making machine that was very selfish. I acquired a nice home, money in the bank etc. but I felt unfulfilled. Only later as a volunteer worker did I discover that doing good for others gives a special kind of joy. Back in the 1970s T. Derek Sobel gave many exhibitions to under-privileged kids for free in New York. When a reporter told him he was wasting his chances to make money he replied ‘Material wealth accrues from hoarding, spiritual wealth accrues from sharing.’ We can’t all be volunteer workers but if we arranged our lives in such a way that we all could do one good turn a day whether for a husband, wife, relative, friend, anybody, that would see the world experiencing over seven billion good turns each day. I know, I know it ain’t gonna happen but if only one percent of the world did this that would be seventy million good deeds daily. That’s a good place to start and believe me the old saying ‘Giving is better than receiving’ is true. Whether or not cosmic karma really exists does not alter the warm glow inside that comes from helping our fellow humans.
And that brings us to the Research Support Network! As members we must remember the word ‘Support.’ If we can do something, anything at all for the network, then somewhere down the line when Parkinson’s is controlled or cured we will have helped to discover that salvation, and won’t that feel good!!
thank you for your kind words. See you at the forum in September
This was an inspirational read. Many thanks. I have oly just come across this organisation, and look forward to getting more involved.