You are not Dead yet

To be diagnosed with Parkinson’s means a new opportunity to re- evaluate life, it’s directions and purpose. Not a chance to turn into a mute, dumb zombie that doesn’t interact with others with Parkinson’s and wallows in self pity.

To survive the Parkinson’s journey we all need each other. We need constant knowledge of all the aspects of the disease. To have knowledge is power over the disease as we will have knowledge to deal with whatever comes our way as it developed over time.

Being diagnosed with Parkinson’s is not a death sentence nor will you die of Parkinson’s.

If we just sit there not getting involved in groups on Facebook. Not Listening to Shaky Radio and all the information from various podcasts. Then we are going to rot in ignorance and poverty of knowledge vital to our well being and joy in living well with Parkinson’s.

We are all in this together. If we are not together then we are lost wandering with no direction.

The ultimate goal of all of us is the discovery of a cure. To achieve this we need to be one working towards the best solutions of research and achieving this goal. How can this happen if we ignore each other and even worse fight with each other.

So let’s give ourselves a kick and wake ourselves up and get more active in the Parkinson’s community. Don’t be the zombie, break free and joy and happiness you will see.

Be alive

A look back on a year living with PD

It’s a long time since I posted on my blog.  In fact it is a year!  A lot has happened in that year, I’ve moved started a new life with a new partner in a new area. I have had to give in and give up work due to the progression of Parkinson’s.  The fatigue and cognitive issues got the better of me and one morning staring at the works PC, I realised it was not fair on me or my colleges to carry on. It’s been one of those significant years and now it’s the end of 2019 and I can say I can look back and say it has not been a year without action after action.

One of the great observations of this year is how the Parkinson’s Community has a great apathy within it.  Some disagree with me but her are my observations.

I belong to several Facebook groups of the Parkinson’s community including a few of my own.  It may look good when they have 2-3k of members but this means nothing.  Out of the thousands of members of these groups for some reason only less than a handful  will be seen posting or even commenting.

There is such a vast amount of information out there of living with Parkinson’s and how to make it as less a weight on a normal life as possible.  There are a few of us working fearlessly to bring this information together and make it available for everyone in an easy to find format.  One of those is Shaky Radio, yes shame you don’t listen!  There is a team of people with Parkinson’s who work hours and hours to make available information and help that requires no effort, just listen.  There is is so a whole team putting programmes together despite their PD for all of our entertainment.  Most of the listeners are abroad and the UK show their numbness to something unique and really valuable to them. Break this disgusting show of ignorance and take a listen  

So what is it we are all suffering?  Apathy is very destructive.  It makes us feel isolated from each other as we leave it all to the few who are wearing themselves out for nothing as most of you are ignoring their hard work.  It doesn’t matter if you have anxiety, depression, pain, or tremors to make the odd comments or write the odd post about how you are is a must for the benefit of all of us with Parkinson’s.  As we are all one with this disease no one is going to judge or ridicule you as we are all one.  If there is anything like that just let someone know and it will be dealt with.

So lets make 2020 a year of unity and make living with Parkinson’s a joy for all of us by joining and helping each other.  Until there is a cure we are the only thing each other have got.

John Scotter

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