It is widely accepted that exercise is beneficial for people with Parkinson’s. 

WPC Blogs such as that published by Katherine Marita on the 6th of December, superbly highlighted the latest evidence based guidelines on the role of Physiotherapy and exercise for the Parkinson’s community.  Katherine’s blog highlighted the many physical benefits such as improved muscle strength, flexibility balance, and function.

At the WPC several presentations highlighted the growing body of research evidence which highlighted the physical as well as emotional, social, and psychological benefits of exercise.  Moreover, the potential neurophysiological benefits of exercise were also highlighted by Professor Bas Bloem, suggesting that exercise may have a role in slowing the rate of decline seen in Parkinson’s.  This makes exercise a very exciting proposition, because as yet, no intervention or medication has had an impact on the progression of Parkinson’s.   Yet, despite this growing recognition of the value of exercise, research also tells us that a significant proportion of people living with Parkinson’s are inactive, with very few meeting the current exercise guidelines.  So why the disconnect?

Exercising with Parkinson’s is challenging.  People with Parkinson’s face the same challenges as those without Parkinson’s and much more.  As Jo and I are writing this blog it is currently -7°C outside, and it is dark from 4pm until 7am!!  But in addition to environmental barriers to exercise people with Parkinson’s experience many other barriers to exercise, such as apathy, low mood, fatigue, low confidence, and low self-efficacy, all of which make getting started with exercise or joining an exercise class even more challenging. 

Being diagnosed with Parkinson’s has been shown to reduce physical activity levels, but living with Parkinson’s can also make people feel less confident about going out, and the symptoms of the condition can make it harder to exercise, setting up a vicious cycle where physical activity declines over time.  What is needed is a form of exercise which is fun, puts a smile on your face and makes you keep coming back for more.  Interested? 

Well Jo Holland may very well have the answer.  Jo attended a locally run cardio drumming class at her local sports centre, where she discovered drumming. (Introduction by Julie Jones)

Parkinson’s Beats - Where it began, where it has been and where it is going by Jo Holland
In the beginning, there was diagnosis, lockdown and then a heart attack, closely followed by inclusion in one of Julie’s research projects on the benefits of regular exercise. The requirements of the PDConnect project were significant and challenging but 3 months later I slipped on my patio, fell and broke my ankle very badly.  Down but not out, I looked for something I could do to improve my fitness during recovery and discovered Exercise Drumming, a 6-week online course which was free to over 55’s living in Moray, Scotland.

When lockdown restrictions ended, they held a 5-week face to face course which for me, was life changing. At the end of the third session, I stood at the bottom of a set of stairs (I usually used the lift) without the pain I associated with getting downstairs. The only thing which I could attribute this to was the endorphins created by the sheer delight I felt during drumming sessions. This convinced me to look for funding so that other people could experience the ‘euphoria’ of Exercise Drumming.

First I had to raise money and second I had to get people interested. I applied for a Parkinson’s Activity Grant and Heather Kirk raised funds to enable me to run some taster sessions with Sharon Finlay of Active Minds Moray. I was fortunate to be offered a grant, Sharon agreed to provide the tuition and Parkinson’s Beats was formed.

I should explain at this point that Parkinson’s Beats involves drumming with an exercise ball, a tub to hold it steady and a set of drumsticks, Some people use an upside down laundry basket and 2 wooden spoons and for those of you with sensitive neighbours (or partners), we do have one member who drums on to a cushion, you still get all the benefits but without the noise. Music selection is varied and inspiring with such delights as T-Rex, Status Quo, Johnny Cash, The Beatles and Neil Diamond, to name but a few.

Sharon and I ran ‘taster sessions’ online and a face-to-face demo at the Elgin Support Group. We organised the required equipment and were raring to go. I wanted to run sessions in a number of venues but it soon became clear that this wouldn’t be possible, so we based our group in Elgin at the Moray Sports Centre and advertised the group in newsletters, social media, at local meetings and exercise classes and had our first sessions in November 2022.

It was clear that further funding would be required if we were going to keep the group running for more than 6 months and so I applied to the National Lottery Community Fund and was successful in my application. This means that we have sufficient funding to continue for another 12 months. We also received a number of smaller fundraising donations totalling almost £3k so the immediate future is secure.

As Jo mentioned, she was awarded a Physical Activity Grant from Parkinsons UK, and set up the brilliant classes which are now delivered twice weekly.  At the same time as part of a larger team (including Jo and I, as well Alison Williams from Edinburgh Parkinsons Branch and Dr Yoon Irons from the University of Derby) applied to Parkinsons UK and were successful at being award a small grant to evaluate the effect of Parkinsons Beats. 

This was a mixed methods study, which was presented at the WPC (see poster).  This study demonstrated that participation in Parkinsons beats improved health and well-being as measured by the Warick Edinburgh mental health and well-being scale, and improved exercise self-efficacy as measured by the Parkinsons exercise measure. 

Focus groups were set up so that the individuals’ perceptions of the benefits of joining Parkinsons Beats could be evaluated, here are some of their comments below:

Physical Impact         
I am just buzzing after attending the class, like I am ready to take on anything.
I feel energized, and it lasts the rest of the day.
Done some exercise, love the music, love instructor. It’s a happy class. You feel you’ve achieved something as well.
Yes, I’m like that – I can reach cupboard shelves that I couldn’t reach before

Emotional Impact       
I am not sure if it is because of the drumming, but I have noticed my handwriting has improved recently,
and my medication has not changed.
On drumming days I’m a lot more [chilled] because I don’t have the pain and the stiffness.
I would say, if you want to feel good, and not to feel like you do first thing in the morning, when you need to stretch and it takes half an hour or an hour to get yourself sorted, come to a drumming class. The simple action of using your arms and your hand/eye coordination. It really lifts your body and mind.

Cognitive Function      
I like the more complex [music] tracks.
You’re pushing yourself more as well because some of the more complex movements are more difficult to achieve.
You have to concentrate so much, and quite a lot of effort is put into it.
I’m pleased with myself when I’ve accomplished the session.

Acknowledgements:
Thank you to Parkinsons UK for the funding to support the Parkinson’s Beats programme, and to all the participants who gave up their time to be part of the study.

So, what happens next you might ask, well there is certainly a remarkable response from the rest of the UK and a feeling of certainty that this is not the end. This is what Parkinsons Beats have been up to since September 2023 and what the response has been from the community:

Beats in the park
The Elgin group were asked to play for 10 minutes at the start of the sponsored walk in Inverness in order to encourage the walkers at the start of their quest. It was a beautiful sunny day but not too hot. We brought 10 balls and 6 people so that others could try out the drumming with us. To say it was a roaring success would be an understatement as the crew from Inverness Hospital Radio played every tune requested and we drummed for 3 hours! I think they would have continued beyond that if they hadn’t been stopped!

Beats on the radio 
After the sponsored walk Jo had a call from Phillip Walker of Inverness Hospital Radio and agreed to take part in their chat show in fall 2023.

Beats at the gathering
The Inverness Highland Gathering in fall 2023 in Inverness was a roaring success and another event has been requested in 2024. Parkinson’s Beats was one of the activities offered for people to try and there was so much interest that the session had to be split in two in order to accommodate as many people as possible. The feedback was very positive with many requests for more local groups in other parts of Scotland.

Hold The Front Page
On 30th October Andy Morton, Health Journalist from the Press and Journal joined us for a drumming session. He and his photographer stayed for the full hour and the subsequent article appeared on the front page with a whole page dedicated to the group on page 9. The article was wholly positive and was very supportive of what we are trying to achieve.

Beats in the community
Parkinson’s Beats has been introduced to five different communities in UK over the last 6 months and they continue to get calls to come to other communities.

SPARC Physical Activity Conference
In September Jo sent an abstract submission to the SPARC conference organizers at Edinburgh University and was selected to introduce this at the conference in November 2023. After a frenzied teach yourself Power Point session a presentation was put together and Jo prepared herself to attend the conference, supported very well by Julie Jones and Amanda McKay. The day itself was enjoyable and the feedback afterwards was very positive. No prizes won but a good boost to self-esteem.

Parkinson’s Physical Activity Event
Jo was invited to speak at the online Physical Activity Event which included NHS and Activity professionals and was a very successful event with a number of requests received to learn more about how other communities can develop their own Beats program. There will be meetings later this month to plan on how best to take this forward in Scotland.

Parkinson’s Beats+
And so the Beats will go on and will hopefully develop and expand throughout Scotland. There are plans afoot to apply for funding which will allow others to be trained and helped to set up their own groups locally. It’s been a busy year and 2024 promises much more.

Jo Holland and Julie Jones both attended the 6th World Parkinson Congress in Barcelona, Spain in 2023. Their work launching and expanding Parkinson Beats is impacting communities across Scotland and is replicable in other places – just ask them how! Email Jo at jhollandparkinsons@gmail.com or her colleague at hkirkparkinsons@gmail.com. Dr. Julie Jones, is a Physiotherapist with specialist interest in Parkinson’s who works at the Robert Godon University, in Aberdeen Scotland. You can email her at: j.c.jones@rgu.ac.uk.

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®