One of the hardest things to resist in Parkinson’s disease is the prognosis, the seemingly inevitable deterioration into dependency. The prognosis is valid as a description of a progressive disease but it does not dictate the future; the rate of change is unknown in each individual.
When predicting the future with a disease it is natural to reach for the worst possible outcome, almost as if by thinking it first you are forearming yourself to gain some sort of control over the situation. But such imagined scenarios are non-existent future events. The future merely consists of more or less inaccurate predictions of events that may never occur. Parkinson’s is hard enough to cope with in the present, never mind adding imagined situations that might not happen. Indeed, predicting positive future events is equally valid as negative ones, but with the advantage of making you feel better in the present.
We should recognise that we live in a series of “nows”, and such insight can provide the best opportunity to gain control. The past has gone and the future is currently non-existent. Trying to reach into the past or leap into the future makes the present even more difficult. Living in the present recognises our ability to act and react now to the situation we currently find ourselves in.
God grant me the serenity to accept the things I cannot change
Courage to change the things I can
And the wisdom to know the difference
I try not to think of,'non existent future events' because they will become part of our now, and exist,sooner or later, sooner seems to be the case now.
As for, 'inaccurate predictions,' have you not Googled or been advised as to what the future holds?
Finally, 'dependency', is inevitable. I am just about there now and nothing, not any positive thinking can change that.
I don't exist in a bubble, I face up to what the future may hold for both of us and just hope that the future is very far away BUT, after 15 years, it is now hurtling towards us and there is very little that we do to halt its progress.
We are born and we die. Its how we play the bit in the middle that counts, regardless of whatever circumstances restrict us.
Thanks for the post. Are you saying that you were able to predict everything that has happened in your life? Every future you imagined has come to occupy the present? Nothing unexpected has happened?
I believe each occurrence of Parkinson’s is unique to that individual. Of course a prognosis gives a general idea of what might happen to me in the future but no one can predict the rate or nature of my decline. Google is good but it can’t predict my future.
All you can do is face up to the present. You say, “I face up to what the future may hold…” That “may” allows for a huge range of predictable and unpredictable possibilities. Try not to live in the future because you are missing out on the present. The present is the arena where you can tackle what your Parkinson’s is at this moment. You can’t tackle what might be, the possibilities are too many.
There's a line in the Werner Herzog documentary "Into the Abyss":
"Live the dash" - the dash on your grave stone between your date of birth and the day you die. Your life, as a series of "nows", is summed up in that dash.
Of course positive thinking doesn't change a state of dependency (thats expecting too much from it) but it can change the way you react to and live with such a state; helping you to extract as much as possible from a very difficult situation. Its like any physical adaptation you have to make (e.g. bath chair or wheelchair) only its a mental adaptation. Physical adaptations are made after an honest assessment of the current situation and choosing to be proactive. They are about learning to live with your changing body. They aren't about being disingenuous or wilfully blind. Its about being in a situation you can't change and making the most of it. The same with positive thinking, its about acknowledging the bad but also seeing the choice in how you react to your situation. Just as you chose to sit in that bath chair. Only with mental adaptations its about learning to live with yourself.
Hi dr jonny,
I know you mean well.Alas,we are all different.To live in the now,which offers nothing but hurt,to try to forget/push aside a past filled with more hurt,and then not look into a future which offers nothing but more hurt.Well,it's impossible to most.
If I try to live in the now,I can,t,I am Empty.Extreme behaviour in the now offers a release without relief.Until another Dawn reveals just another future day of hurt.
I hope you can continue to remain positive
Alas,to some,there is just NOTHING
There are some things that cannot be predicted such as how quickly this disease will progress in each person, when I will be forced to give up work or when I will need help to get out of the bath.
I can however; predict that Parkinson’s will inexorably progress regardless of any positivity I may feel. I will, at some point be forced to give up work, I am only 54 and the chances of being able to continue for the next 10+ years are extremely slim. I am already struggling to get out of the bath without going a—over t-- so that will be in the not so distant future as well.
No amount of ’’ here and now” attitude will change what is happening to me ( unless someone possesses the cure ??? anyone ???? no ??)
I spend much of my time ‘being brave’(friend’s words, not mine) and trying to deal with my life as positively as I can, I even feel a hint of optimism on the odd occasion but I cannot stop this raging termite that is destroying my brain cells (although the Azilect is trying hard, bless it)
I think people should be allowed to deal with this invasion however they need to. It is easy to give advice, often well meaning, but we are all different and as Titan says ‘I hope you can stay positive’.
Here and now thinking isn't about changing the fact of Parkinson's or of the decline we are facing. Its about living the best way you can with Parkinson's. You can do this by reacting to it in a helpful way.
You say that you will have to give up work in 10 years time. Why don't you say, "I am lucky to be able to work for the next 10 years." It is an equally valid interpretation with the added bonus of making you feel better. I think your lucky - I'm 33 and I've had to give up a career in scientific research. Due to my movement symptoms and my fatigue I'm unlikely to have a full time job again.
Of course we live in different circumstances and all of this is relative.
Having Parkinson's is like having a big lump of modelling clay in front of you. The clay is a constant presence and the amount grows everyday. You have a choice of how you mould at least part of the clay; whether into positive or negative shapes. You may see Parkinson's as a hard rock but you can still chip away at it.
All the best for 2013!
Since I had to leave my employ, I have been constantly setting goals and achieving them or not (rarely) as the case may be,Its a game, a game of life
I am forever dreaming up Ideas, some are Dangerous Silly or Crackpot, my overwhelming desire is to make the trip to Normandy in April, I will make it
Parky can come along for the ride if he wants, there he will see the countless
white crosses of Braver men than I will ever be, but then he can always stay at
home and give me a break. FAT CHANCE.
Sorry to hear about your friend. If you are interested in Normandy you should read David Kenyon Webster's book "Parachute Infantry." It is superb!
Thank you sir this is a bad start to the New Year, also I shall look out for the
book Regards Fedex
Hello Fedex, hubby and I went to Normandy last year, the trip was great and there is so much to see that we didn't manage to fit it all in. We are hoping to do it again this year and complete the quest. The war graves are so well cared for, even the little ones that we stumbled upon whilst driving, obviously too small to be added to some of our maps. On the whole we had a wonderful and very interesting trip, one word of advice, if you can't walk very far you might need some assistance. I took my very small disability scooter which I was hoping not to use but was so thankful for it some days. I do hope that you enjoy it as much as we did.