Ups and downs of being a person with Parkinsons (PWP)

“Every sickness and disease has an alien quality, a feeling of invasion and loss of control that is evident in the language we use about it.”

― Siri Hustvedt, The Shaking Woman, or A History of My Nerves

Such a powerful quote, and one I'm sure everyone who lives with a chronic long term disease can associate with at times. It certainly feels like fighting an invisible foe/alien that takes control of our bodies as if they were playing with marionette strings and delights in giving us pain, loss of control and utter frustration.
My alien was 'pulling my strings' this morning, it was possibly the hardest morning yet since diagnosis, and my body ached from finger tips to toes!! It took until mid morning before I felt able to take the dogs out for their run, and boy they were ready for it!

However, my little alien is in for a shock because one thing I have learnt since diagnosis  is that positivity rules the day because little alien being thrives on negativity and detests positivity.
You may have read in my previous blog about the expert patient program (EPP)

http://www.peninsulacommunityhealth.co.uk/our-services/expert-patient-programme.htm   which I recently took part in. Today is the first day I made use of the coping strategies in my EPP toolkit. I tried the relaxation techniques once Gemma left for the day centre and just lay on my bed for 15 minutes and just focused on the pain from head to toe. Of course, by focusing like this on the symptoms with positive self talk and controlling the breathing in a quiet place is a recognized cognitive strategy, but, I must say it's growing on me and I'm probably the worlds worst cynic!   This is all part of becoming an active self manager of my condition, with the added benefit of cocking 2 fingers to the little alien who doesn`t like this self positivity one bit!!

It was a shock yesterday to hear that Billy Connolly has been diagnosed with early onset of Parkinsons disease, as well as enduring surgery for prostate cancer. I'm sure we all wish him well for the future.   He will be an excellent advocate for Parkinsons and more of the public will understand a little about the condition and anything that demystifies is positive.

A common thread I have discovered among people with Parkinsons is a plea to be treated normally for as long as possible. Once we have this label people with all good intent and without any malice seem to wrap us in cotton wool. Just because I have this label doesn`t totally alter my ability to do things or enjoy things I used to do the day before I was labelled.
I think people have to trust us to have the ability to say sorry not today if we are asked to do something or help someone, because we know our bodies, our limitations and how we are feeling in the here and now, and to be honest it's good to be asked sometimes, it makes us feel 'normal'- whatever normal is!

Well that`s it for now, and besides a good film is starting on tv! So thanks for reading this, it's from the heart, as it is, and as individual as Parkinsons affect on people.

Look after each other, love and respect your family and friends, and most of all give that alien hell.
Remember, positivity rules over negativity.

Any comments or feedback do not hesitate to contact me on here via the contact forms, email tjkernow@hotmail.co.uk Iam on Twitter as Kernow Writer and of course on facebook as
 Tony Kernow please feel free to add me as a friend.