Goodbye Yellowbrick Road

People new to Parkinson’s need support from the minute the tornado hits Kansas. By the time we reach the Emerald City, it’s too late.

The six eminent voices who make up the Movers & Shakers have kicked off a third podcast series. As usual it is informative, thought-provoking and funny. In the New Year break, Paul, Rory, Gillian, Mark, Nick and Jeremy have been doing their homework. This week they produced the latest version of their Parky’s Charter, which they have whittled down to five priorities:

• Access to a neurologist within 18 weeks of referral
• Information leaflet at diagnosis
• Race to a cure
• Multidisciplinary team care from a wide range of professionals
• Parky passport to streamline benefit application

 These are all worthy goals, congruent for the most part with the work already being done rather more quietly by the Parkinson’s UK Excellence Network. Parkinson’s UK CEO Caroline Rassell contributed to the latest podcast where she encouraged the Movers & Shakers to become ‘more aggy’ and use their voices to hammer these messages home.

Limbo

I have a problem with the first two Charter items – not for what they say, but for what they leave out. Yes, we need timelier access to specialist care. Some people have had to wait more than a year before they have been seen by a neurologist or geriatrician.

Yes, we need information that answers our many questions about what happens next and who can help us. The Charter in its current version says these should be handed out ‘at diagnosis’.

When is that, exactly?

• Is it the moment the GP first raises the P word and rattles off a referral letter to the hospital specialist?
• Or is it at the first hospital appointment when the specialist confirms the GP’s suspicions?

Between the two there is a terrible limbo. I only had a six-week wait between the bombshell of GP referral and hospital appointment. Long enough! That was the time I really needed information and support. Like Dorothy in The Wizard of Oz I found myself on a long and complicated pathway, not really knowing what to expect at the other end.

In search of a brain: First, I needed information – about what was happening to me, and what might happen next. I Googled through the night, but there was so much to absorb. I needed someone to cut through the information and misinformation and bullet-point a few relevant priorities for me to tackle one at a time. Fortunately, I had a friend in the next street with nearly 10 years’ experience of Parkinson’s. She pointed me in the right direction over coffee and fabulous cake.

In search of a heart: It’s easy, when one part of your body starts to fail, to give up on fitness and exercise. I found someone to drag me off the couch and out into the fresh air, setting clear and realistic targets. And someone else to look at my shuffly, asymmetric gait and suggest big, powerful, purposeful movements to start reconnecting my failing nervous system.

In search of courage: I confided in a small group of family and friends, who took the news in their stride and made it clear that they were there for me, no matter what. They were, and still are, ready with offers of help. Which I’m very happy to accept!

If you recognise yourself as one of my travelling companions from the summer of 2019, I’m forever grateful to you. By the time I got to my specialist appointment I had questions prepared and I knew what to expect. In truth, it was rather an anti-climax. It was obvious that I wouldn’t be able to click the heels of my ruby slippers together and go back to Kansas, but I hadn’t built up any expectation of this. I must make it very clear that this Wizard was, unlike the Emerald City guy, realistic, helpful and informative about the way forward and the medication that would best manage my condition. I just wish I’d been able to start meds sooner.

Travelling companions

I believe people shouldn’t just set their sights on a far-off neurologist appointment somewhere over the rainbow. We need to help people seek out the support and wisdom of others who can help them through those early weeks.

Positive role models: Newbies need to meet people with Parkinson’s who are further along the road but still managing their condition with an active, positive and healthy lifestyle.

Professionals: Regular readers will know how passionate I am about the role of exercise in managing my Parkinson’s. I’d like to see allied health professionals, particularly neurophysios, getting the exercise message out at a much earlier stage. Even if the ‘movement disorder’ turns out not to be Parkinson’s, there would be no harm done.

A growing band of fitness professionals are offering classes where it doesn’t matter if you’re a bit wobbly – let’s support them to offer more services.

I’d also like to see GPs supported with training, resources and links to help patients navigate the road ahead.

People without Parkinson’s: Our friends and family can help us better if they understand the condition and what we’re going through. Let’s give them the information and insight they need.

Play > Goodbye Yellowbrick Road > Elton John