Here comes the sun

Optimal health care for people with Parkinson’s is a team effort, and we are the captains. Time to start building the dream squad.

Earlier this week, I expressed some scepticism about health awareness days and the difference they make year-round – but I think I’ve seen the light.

One of the problems with awareness days is that there’s just too much information to absorb in a short space of time. There are so many calls to action that you don’t know where to begin. It can be the to-do list from hell.

I didn’t want to sit down indoors on a nice clear Sunday morning watching a bunch of talking and singing heads with lots of different messages. But I’m glad I bookmarked the World Parkinson’s Day event to view later. The key, I’ve decided, is to pick one talking head and one call to action and run with that. You’ll find Professor Bas Bloem around 31:15 minutes in – he is Professor of Neurology and Director of the Centre of Expertise for Parkinson and Movement Disorders at Radboud University in the Netherlands.

Centre of the universe

In a review paper published in The Lancet this week*, Bloem and colleagues Michael Okun and Christine Klein bring us up to date with current thinking on Parkinson’s.  It’s refreshing to note that throughout the piece they refer to the ‘person with Parkinson’s’ and not ‘the patient’. Bloem says:

“You are a human being with a life, not a patient with a disease.”

The team propose this ‘solar system’ model of optimal care from a multidisciplinary team of health professionals.

“There are no individual stars within the multidisciplinary team…This model sketches an ideal situation in which each person with Parkinson’s disease has access to each of these disciplines, which unfortunately is not the case in most places in the world.”

Indeed it isn’t. In many places, people struggle to see a health professional in the central orbit, let alone get a referral to others further out. Some people may just look at this and say ‘Yeh, in your dreams, buddy’, but if we don’t start chipping away little by little, things will never change. As my mother used to say: ‘Don’t ask doesn’t get’.

Small voices can make a big noise

Over in Twitter, a small group of us were discussing access to speech therapy.  ParkyBoy said his voice was getting softer and he’d asked for a referral. He’d been told he didn’t have a ‘clinical need’. Grrrr! With Parkinson’s voices it’s ‘use it or lose it!’ The clinical need is at the point of diagnosis. The sooner a person with Parkinson’s can start exercising their voice, the better. With support from the rest of us, he asked again, and this time got a referral.

ParkyBoy tells this story in more detail in his own blog, Raising our quiet voices. He too, was inspired by Professor Bloem’s call to action:

“Don’t wait for these things to happen passively – be an activist, take the stage! Don’t think ‘I’m just an individual, my voice doesn’t matter.’  If we bark up the tree together we can make a change.”

Woof! Woof! to that.

*Reference

Bastiaan R Bloem, Michael S Okun, Christine Klein (2021). Parkinson’s disease. www.thelancet.com   Published online April 10, 2021   https://doi.org/10.1016/S0140-6736(21)00218-X

Play > Here comes the sun > Abbey Road > The Beatles

Here’s a song all about optimism and hope for the future. It has been a long, cold lonely winter, but I think the smiles are returning to people’s faces, even if they are shivering in pub gardens.

Main photo by WikiImages on Pixabay