Originally appeared in The OT Magazine November/December 2018 ( Parkinson’s Pathway)
A new learning pathway has been developed as part of the UK Parkinson’s Excellence Network to help occupational therapists, physiotherapists and speech and language therapists to easily access information, tips and guidance to improve their Parkinson’s-specific skills and care.
Ana Aragon is a senior OT specialising in Parkinson’s and she works with Parkinson’s UK. Ana has a wealth of experience working with people living with Parkinson’s and has traversed the complex journey that this fluctuating condition throws at both the patient and the healthcare professional working with them.
Ana was one of the authors of Occupational Therapy for People with Parkinson’s: Best Practice Guidelines in 2010 and the 2018 updated version has just been published.
The learning pathway has been in development for about 18 months to provide a vital resource to healthcare professionals working specifically with people with Parkinson’s disease.
We spoke to Ana about the difficulties that occupational therapists can encounter when assessing and rehabilitating a patient with Parkinson’s disease and what this new resource can offer to help OTs.
“Everything that had come before in my clinical experience was completely turned upside down working with people with Parkinson’s because they need a very condition-specific approach when you are working as an OT assessing and rehabilitating, it’s the nature of the condition.
“When you assess them they don’t have a level of function, but have two relative extremes and they can switch between these two states hour by hour, minute by minute, through the 24 hour day. It’s a very fluctuating complex condition. We have to use a very condition-specific approach to work with these individuals as therapists.”
The fluctuation can be as extreme as a patient being able to mow their lawn one day to having to use a wheelchair the next and struggling to even drink through a straw without assistance, so assessing their function and ability can be very difficult.
“It’s really important for OTs to explore the range of ability so that treatment can be focused at the times when people have the greatest difficulties because there will be times of the day when functional tasks can be performed with ease, it makes it really hard to assess somebody – it’s called paradoxical movement.
“Even things like when you try to perform an assessment they may well perform uncharacteristic behaviour because you are watching them. We teach people to concentrate to improve their performance so when they are being watched they concentrate – we teach people to slow down do one thing at a time, focus their attention, just like being in the moment – you have to kind of describe your movement.
“Classically lots of men with Parkinson’s will report having actually timed themselves in putting their clothes on – buttoning a shirt taking half an hour. And then you teach them to just talk through – ‘grip button, find hole, push button through hole, then pull’ – which is written on a little cue card, and then they can do it at normal speed which is a real revelation for the person concerned.
“Because Parkinson’s affects the real nuts and bolts, of movement particularly, but also thinking and planning and organisation, it makes the person experiencing it feel very childlike and it’s very humiliating not to be able to take your coat off when you get to the hospital or put it on at the end of the afternoon. So, actually addressing these really minor elements of everyday function like getting out of a chair, changing direction when walking, getting through a doorway, those are the sort of things that they really struggle with.”
The Learning Pathway
The learning pathway was launched at the end of July and has been created to bring together information, resources, courses to expand learning and best practice guidelines.
Registering on the Parkinson’s UK website through the learning hub allows you to choose your profession and access relevant and appropriate materials to aid your learning and skills base. Access is available to anyone with an interest in this area and the resource has also been accessed by dance and exercise teachers who teach classes for people living Parkinson’s, researchers and many others.
There are general resources about Parkinson’s alongside information on motor and non-motor symptoms caused by the condition. You will find short presentations, tips for interventions, red flags to look out for and many useful publications and courses signposted and linked to.
The pathway is designed to be a live document so they are encouraging allied health professionals to get in touch with any relevant learning opportunities for therapists in the UK. If you would like to advise them of any opportunities email firstname.lastname@example.org.
Visit parkinsons.org.uk to access the learning pathway.Get your copy of The OT Magazine