News article

Ping Parkinson’s

Its April, to be precise it’s the third week in April and for those of you who didn't know every April is designated ‘Parkinson’s Disease Awareness’ month with an extra special push in the 3rd week.

This is my 13th April living with this condition 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, 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 physio therapy 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, its 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 everyday. You lose all the time, things you don't want to say goodbye too. Its critical therefore to top yourself up with things you can still achieve. The only rubber I want these days is that of my bat!

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[redean]

well said

[FMundo]

One of the possible changes that will make many more people know and understand what Parkinsons is and does, symptomatically speaking, is the Fox Insight program and others like it where clever applications, written for IPhones and Smartphones capture huge amounts of objective data from tens of thousands of PwPs who are wearing watches and other sensing devices (sensing tremors, gait, voice, doing memory tests). Big Data analysis will provide all treating physicians detailed information regarding efficacy of various treatments and allow then to track progression of disease much more accurately. Now we're in the dark ages in terms of how physicians observe PwPs . . . a brief office visit every six months (be serious!).

One thing that occurs to me is that the new, precise real-time and intense collection of data will be to provide a new basis for "public perception and understanding" of the illness. In spite of the vast varieties of symptoms and experiences, I suspect that as tens of thousands of individuals' data is analyzed, trends will be identified so we'll be able to identify various paths of progression and maybe even have types of Parkinsons emerge.

[1540]

Great piece