The lightbulb Effect 'ON/OFF' Syndrome.... 

And just like switching on the lights I am back, optimised and raring to go!! It is no wonder that people's reaction to the ‘On/Off’ phenomenon is a strange one!

One of the first comments you hear from the experts is the strange terminology of describing a person with PD as On or Off. Basically ‘On’ means the meds work and you feel optimised and ‘OFF’ means meds not kicked in. The diagnosis of Akinetic Rigid Syndrome fits perfectly when meds are not working, in a nutshell I am like a warm blooded corpse, finding it difficult to function.

You can also be off in a cognitive way and a physical one or visa versa and 95% of the time both. Off in meds will be down to a number of factors the main being an absorption issue, the weather, having a virus. or over doing things etc etc.. This is why it is important that PD meds are not taken with food or close to eating and taken at the correct times. When ‘off’ I take a ‘rescue’ drug that is dispersed in water, it is absorbed and starts to work with in 2-3 minutes and will last no longer than 10-15 mins.

The disease is so unpredictable that planning anything in advance is near impossible. Infact every hour is different and believe me it is so damn frustrating. A life sucking parasite that takes bites out of you daily, wearing you down until there is not much left.. The sad part for me, when Off means one thing..HIDE!!!!
So what is it like to be ‘off’...I will tell you later………….

12 September 2015

wow here we are nearly half way through September and for me that means wedding anniversary time!! and yes I can recall the day. 14th September 1991, it was a Saturday and no footy!! although I did sneak off to catch the footy results..and got caught hehe! I will say more on Monday!!

On the broken bone front all healing and no major disasters so with luck all will be fine and dandy. Last Monday we had a trip to Bristol to see the Neuro team, they want me to stay for a week in December so I can be assessed... more on that to come.

Thursday our good friends Brian and Jan Davies popped up always ggreat to see Bryn as he always makes you laugh even thoughh he has PD. The man is amazing.....oh good luck on that bottom thing lol

Friday Dentist...hate it and even worse with PD bbut it was OK...For info there are specialist dentists around, they specialise in disability contact the NHSfor details.

OK time to watch MoTD even better as Everton will be 1st on after whoopi Chelsea 3-1..yes we did...

It is Thursday 30 July, I sleept 4 hours last night, first time over 3 hours in weeks, my usual is two and half, may be three!!


So day 4 with a fractured arm!! You never realise how basic tasks become diffiult. Notwithstanding my illness, things are difficult enough..a quick difficult list. Like dressing, washing. Last tight I tried to hold my gaming pad, very hard so no more gaming for a while ahhhh!!

Today I go to the fracture clinic..updates to come. what I do know is it is still very tender.typing one handed...I was slow before....

A visit that makes you smile

Great to see my little neices yesterday,

look out for.......

Just what is Akinetic Ridged Syndrome?

Mental Health and PD

Why do symptoms get worse with a cold?

MY SHORT PD STORY - Life before, life now and Life Beyond...

MY SHORT PD STORY - Life before, life now and Life Beyond...

Part 1

Life before diagnosis

My name is Russell Hale. I live in beautiful South East Cornwall with my best friend, wife and carer, Alison, and two just stunning girls, Jess and Louise. And believe me when I say this life don’t get any better than having those three stars with me through it all!!!..........

Entering your early forties is usually a time to reflect on what you may or may not have done since leaving high school. And looking beyond to the years ahead reflection turns into the 'what if'; So given the chance to do things again would I actually change the chosen path , and if I could what changes if any do you choose.

This continual self-appraisal soon becomes a challenge and like all good challenges I make and set the goals. So at some point in your forties you stop and ponder, and that deep searching question is broadcast over and over in your head...’did you achieve your dreams’?, and then one asks ‘what if I... but I could of if...’’ To ask the question and find the truth is a challenge in itself, needless to say, life is a challenge.

For me,I wanted to be a bus driver, then a train driver, seriously I did! but as a kid I yearned to put on the royal blue jersey and play for my beloved Everton FC... oh what dreams!!.....

Life before getting poorly was great, being married, getting a degree, good job, etc, sure we had ups and downs, but that is normal, but looking back it was great. Strange how you never appreciate it at the time!!.

Life now

I was officially diagnosed with Parkinson's Disease in August 2011. As we all know, the diagnosis process for YOPD is, well not easy! It took 2 years, every neurological test I could imagine, and 3 neurologists. Here is a piece of the long road to the diagnosis… To be continued….

Armed

Armed but not dangerous!!!!

Yesterday I took a tumble off the garden and fractured my arm...8/9 hours in Derriford hospital. Big thanks to the paramedics and A&E staff who where amazing. And to my neighbour who legged it over to help Ali scrape me off the concrete!!!