We’ve been given Persona 3 to look at. He’s 41, single, works in IT. He likes sport and he drives. He’s not much of a reader, likes to travel and is umbilically attached to his phone. He doesn’t want anyone to know that he’s just been diagnosed with Parkinson’s. Especially not his mates; especially not his work.
Our task now is to figure out what would help young PeeThree get to grips with his diagnosis. Apart, that is, from a cure, which would obviously be everyone’s first choice.
There’s half a dozen of us around my table in Seminar Room 2. Our group consists of a neurologist – well, my neurologist, in fact – who is a Parkinson’s specialist, a Professor and a jolly decent cove to boot. She’s joined by a GP, a paramedic and two of us – Tony and I – who are giving the condition a whirl. Other tables include more doctors, more patients, carers, our Parkinson’s nurse, researchers, dietitians, physios, IT geeks, someone from Parkinson’s UK and the project co-ordinators. This is such a positive project: the room is just bursting with ideas and expertise.
The project that has brought us together is extremely ambitious. We’re designing a “toolkit”- a resource to help people with Parkinson’s but also families, carers and non-specialist medical staff. I read the other day that the average GP will see a new case of Parkinson’s roughly once every three years. Given that the research is flying at the moment, it must be pretty well impossible for a general medical professional to keep up to date.
It’s early days and at the moment the working party is trying to pin down what help/advice/information is essential, what is desirable and what might be counterproductive. So on the table of champions, we’re considering the hypothetical needs of young PeeThree and his like. My heart bleeds for the lad. He must be staggering under worries about the future. Will he be able to carry on working? What about driving? Is Parkinson’s going to kill him? (It’s not – but does he know that?) What should he do about exercise, diet, medication? What about joining a research project? What about his social life and what about romance?
Tony and I both feel that one of the most useful things for PeeThree right now would be the chance to chat with another Parkie of a similar age and background; someone who can embody @DancingShrub ‘s brilliant advice for the newly diagnosed – you are still you and degenerative isn’t next week. The question is how to facilitate him in finding the right contact; hooking up with someone who has a different sort of Parkinson’s could be worse than useless. We talk round this for ages and someone jokes that we could do with the equivalent of a dating app, the Tinder, or Grind’r of the Parkie world. Maybe we could call it Trem’r. *
The session flies by; the project is off to a racing start. So hang on in there, PeeThree – help’s on its way!
(My autocorrect keeps trying to change the last clause to “hell’s on its way!” which is absolutely not the message!)
*please note, other symptoms are available.