This is my 13th April living with Parkinson’s disease and when I was first diagnosed we didn’t have an awareness month or week. Neither did we have twitter, face book, pintrest or any fast social media news channels.
Now we have all of that access into people’s lives we should be much more informed, shouldn’t we? However even the best campaigns stumbled upon or planned can falter, like the ALS bucket of water, we all chucked water and raised bucket loads but what three things can you tell me or I tell you about ALS? I suspect nothing.
This condition like Parkinson’s remains largely mysterious.
It is however, little wonder, people are in the dark, so to speak, when I explain that even those of us, the patients, living with the condition fail to have the answers.
Without awareness and knowledge how can we best direct our support especially and importantly non financial.
Parkinson’s is a complex degenerative illness for which currently there is no cure. The treatments can be aggressive, produce unwelcome side effects that make you generally unwell and can be potentially mind bending.
All of that makes it a very difficult thing to articulate and often we can be subjects of assumption or misunderstanding. Fumbling for keys, unable to get coins out of your purse, a kind of ‘drunken’ clumsiness and worse, when the illness is really biting, your dignity can melt as even the ability to reach a bathroom in time becomes challenging.
So what do you do after a diagnosis like this? Well it varies for us all.
I know what I’m doing. I am trying to stay fit and well, doing the things I love and also loving the things I do. I make sure the people I care about know that they are special to me what they can do to help and I never say ‘it can wait’.
My mantra in all this time has been simple ‘keep busy, work that brain and embrace the changes you have to make’.
I failed miserably at physiotherapy, an essential part of keeping this condition in check. The thing about PD and physio is this: you cannot have an improvement plan, because we don’t improve. Our bodies are in a state of constant war and we use all our strength up keeping an equilibrium.
This April I wanted to be focused and tell you about ping pong. I took it up in October and am completely hooked.
It is brilliant! It’s a workout that is coupled with coordination and balance moves.
It’s the only thing I do these days where I can see improvement.
That’s not just good for you, it’s good for your soul.
In 2017 the Olympics goes to Rio. For the first time a Parkinsons disease athlete is featured playing, yes you’ve guessed it table tennis!!
People ask me ‘what’s it’s like’ to have Parkinson’s disease? well it’s a bit like being a pencil drawing and having a giant rubber erase bits of you every day.
You lose, all the time, things you don’t want to say goodbye too. It’s critical therefore to top yourself up with things you can still achieve. The only rubber I want these days is that of my bat!
For more information and support please contact www.parkinsonsuk.org.uk
The nearest table tennis group is held on a Monday from 10.30am at Duns Swimming pool.