The Parkinson’s diagnosis was a shock. However, we had dealt with other major events in our lives together and we would do the same with this.
Where to start? How to navigate this Brave New World of Parkinson’s was the immediate challenge that we had before us. It took a while but eventually we managed together like we have done most things in life.
Our Parkinson’s Journey
The first time I spotted something wasn’t quite right with Dad was on a holiday in Turkey ten years ago. He seemed suddenly older, and I described him to another family member as “slightly doddery”. He was shuffling slightly and taking smaller steps.
A couple of months later, that family member- a former nurse- took me to one side having seen him at a family gathering. She told me that she suspected that the change in the way he was walking was likely to have a neurological cause.
I persuaded Dad to go to see his GP, who referred him to see a neurologist. I remember Dad being slightly alarmed that he hadn’t been sent away by the GP as a timewaster. I travelled up North to join Dad at the appointment with the consultant.
Half an hour later we walked down a long corridor together with the words “You’ve got Parkinson’s” hanging between us.
It was hard to know where to go from there.
I’ve talked to quite a few people since who remember the same sense of bewilderment. It’s something I had a vague understanding of but couldn’t have told you much about it, certainly not progression, causes, treatment, inheritability, timeframes. And I wasn’t sure I wanted to read ahead too much either.
Top 10 Useful Helpers for Newly Diagnosed Parkinson’s Patients
Over the years I have learnt a lot more about it. Someone recently told me their father had just been diagnosed and I jotted down a few things that I thought might help and this is the list which others might find useful.
- You must tell the DVLA if you have Parkinson’s disease. Here is the page on the gov.uk site which takes you to the forms you need to fill in to let them know about the recent change in your medical history. DVLA Parkinson’s Disease Info.
- This YouTube video featuring Dr Shapira is worth spending forty minutes watching if you want to get a good understanding of which part of the brain is affected (the part that’s responsible for the ‘auto-pilot’ part of movement) and what’s happening to dopamine (the messenger from one nerve cell to another). He talks through the history of Parkinson’s disease PD, the causes (no environmental causes known), the signs and symptoms and most importantly the treatments and the research that’s ongoing. He explains the main drug treatments, Levodopa, Dopamine agonists, MAOB inhibitors and Anticholinergics and how treatment might progress over time.
- NHS choices gives a very clear overview of Parkinson’s symptoms, causes, treatment and advice on living with Parkinson’s. There is also a box on this page for you to look for local services for Parkinson’s disease signposting you to local groups and organisations that can help. NHS Choices health information across the spectrum from initial accurate diagnosis, balance problems, slowing of movement, sense of smell to common movement disorders. The site will help familiarise you with the landscape and vocabulary involved in navigating the NHS system.
- Medication is key to treating the symptoms of Parkinson’s. Taking the medicines at the right time is crucial to getting the best outcomes and being able to understand if the medication is getting the right results. Medicine management solutions are therefore really important.
- “Simple hacks for life with Parkinson’s” is a TED talk featuring designer Mileha Soneji. In this short video Mileha helps you to understand how visual cues affect ‘freezing’ and the autopilot of movement not working as it should.
- Find your local Parkinson’s nurse. They are the gatekeeper to everything that’s available to help you over the coming years. They can change your medication, refer you to physios, occupational therapists and any other services you need.
- There are a couple of exercise programmes which have been shown to have a positive impact on mobility for people with Parkinson’s. The first is called “BIG” which works on exaggerated movements to overcome some of the loss of smooth movements.
- The other is the Alexander Technique which can help improve the fluidity of movement and improvements in posture which can have a surprisingly big impact on mobility for people with Parkinson’s.
- Parkinson’s UK is at the forefront of activity aiming to drive “better care, treatments and quality of life”. They have local teams and offer local support.
- “The invention that helped me write again”. This is a really inspiring news feature the BBC ran featuring Emma Lawton, a graphic designer with Parkinson’s, and Haiyan Zhang who invents a watch which helps Emma’s tremors.
The early days of diagnosis can be overwhelming.
Hopefully the 10 helpers above will help you orientate yourself in this newfound world. Remember you are not alone there are many organisations and individuals that can help, so don’t hesitate to reach out for support.