Why Dancing with Parkinson’s?

Many of you may not know this but dna’s programmes are built generally on personal experience. Something that comes from my own dna and driven by community need. Every programme tells its own story and has its own history and today here is why we choose to Dance with Parkinson’s.

In 2016 we were together as a Wright family at my in-laws for Easter. My husband’s mum Jane, said that she had something to tell us. Poised, we listened as she told us that she had been diagnosed with Parkinson’s Disease. It was a very emotional time, as all of us unsure of how the disease would affect her future at this stage, she had a consultant appointment coming up which she was yet to attend that would give her more answers. I felt grateful that she had shared the news with us so we could support her.

I must admit that I had noticed a slight tremor in her hand since Christmas and I think that had already spurred on my intrigue about the positive benefits dance can bring someone living with Parkinson’s. I mentioned this to her early on in her diagnoses, but I knew I had to do more.

Here are some of the other signs you may notice in someone with Parkinson’s

· Involuntary shaking/tremor/s

· stiffness in muscles especially when trying to sleep or first thing in the morning

· difficulty sleeping/ insomnia

· slowness of movement (bradykinesia)

· a hurried, shuffling walk (festination)

· loss of taste

· constipation

· lack of co-ordination

· ‘freezing’, where people suddenly cannot move despite wanting to

· change in posture from a more upright, vertical stance to a more stooped and curved line in the thoracic spine

· risk of falls and related injuries

· the voice may become quieter or have difficulty in speaking

· facial expressions may be difficult to read by others

Every person with Parkinson’s has individual symptoms. They may discover they have a mixture of these symptoms or just a few. Parkinson’s is a degenerative disease that affects the brain nerves by reducing the chemical dopamine. We do not know at this time what causes this chemical reduction and there is currently no cure for the disease. Generally, people start with limited symptoms and they worsen over time. Drugs can support the symptoms to ease.

Many people living with Parkinson’s may also gain secondary illnesses as the disease takes its toll on the body and mind. This can include depression, self-isolation for fear of leaving the home. There is a link between Parkinson’s and Dementia and falls from the loss of coordination may bring about further body mechanical issues or surgeries.

Back in 2016, dance classes in the UK were few and far between. ‘People Dancing’ a development and membership organisation for community and participatory dance in the UK were a driving force in providing information as to where in the UK classes could be taken and offered a map as to where classes were based. I also knew about our regional hub organisation Dance East who started a partnership with English National Ballet in 2010 that offered a Dance for Parkinson’s programme at the Dance House.

I investigated the work of Mark Morris Company in Brooklyn one of the companies I was aware of that had founded ‘Dance for PD’ after I had already experienced time with David Lethenthal in the People Dancing Summer School 2014. They bring to light that there are 38 research studies that can inform us about the benefits that the arts can offer someone living with Parkinson’s. Research can be viewed here and ‘Dance for PD’ classes are specifically suggested as an activity for people living with Parkinson’s.

So why was it important to create a dance class for Jane but additionally bringing dance activity to people with Parkinson’s in Essex?

Through all studies, exercise particularly forms of dance such as ballet and tango has shown to be greatly beneficial for people living with Parkinson's; to manage or potentially slow the progression of physical symptoms and to help other associated symptoms such as mental health.

I wanted to not only support my mother-in-law, but I knew others would benefit from the programme too as there was nothing of its kind in our county and our style would be creative/contemporary dance which also had not been offered or researched by other organisations at this stage. This is also the general style of the organisation.

We knew from our research studies with our early year's dancers that creative dance was so crucial to supporting the early development stages and helped with balance, coordination, oracy, and numeracy in our award-winning programme ‘Interactive Family Dance’. What if creative dance could offer the same signals and developments of the brain for those with Parkinson’s?

So, we embarked on our journey in late 2016.

We partnered with Colchester Castle as our venue as I felt it offered a great stimulus for participants to create movement and each week one of the historians Ben would take our dancers around the museum to talk about an artefact that would be the stimulus for the class content that week. Charlotte Haddon who had been delivering our youth work for some time had also made herself known to us as an artist who was also really interested in setting up Dance for Parkinson’s classes, and between us, we found a common ground to push this forward. Charlotte had been working on the English National Ballet programme at Dance East and so brought with her knowledge and experience we didn’t currently hold in any other artists in our area.

We made a conscious decision to call our programme Dancing WITH Parkinson’s as both Charlotte and I were clear that this was not a therapy class for those living with Parkinson’s we were not replicating a medical programme or physio but we were offering dance to fulfil people’s lives, people were coming for the enjoyment and benefits of dancing in a small hope to support symptoms.

It was also clear that we needed people to feel like we were not just treating their symptoms or them as ‘patients’ but the classes were for them and we encouraged feedback to shape our programme as we also learned about the individuals in the space with us. We also encouraged them to come to classes with friends and partners. Each week like many of our classes there was also time for a 30-minute social so everyone could chat and create a peer support network.

Charlotte created a relationship with Parkinson’s UK Colchester and the programme excelled at fast speed with 15+ participants attending each session.

See here for our very early days when the BBC came for a view

Jane has been a constant and valid member of the group since we started in 2016. I am sure she would have much to say about the sessions, and perhaps I will ask her to write us a blog for the future, but I just wanted to add that I have seen her grow into a beautiful dancer. Each time I see her in class I am so proud of her, releasing her inhibitions and just enjoying the moment. I know the programme has many benefits to her Parkinson’s as when COVID-19 came about she mentioned she was very much missing classes.

How the programme has moved since 2016 voiced by Karen Pratt our Dance Development Officer who has been delivering on the programme since 2019.

I love delivering on the Dancing with Parkinson’s sessions with dna. When I started with the group, we were delivering monthly sessions. Now we have expanded to fortnightly, to weekly sessions, alternating between Colchester and Wivenhoe. I started delivering the classes not really knowing what to expect, but everyone was incredibly welcoming and it’s now an absolute highlight of my week.

I can see the benefits of the sessions physically and mentally and feel there’s a lovely sense of community and rapport between the participants. Since COVID and having to move online, I feel it’s been even more apparent. It’s so wonderful being able to connect and see faces on the screen, check in on people’s wellbeing, dance together and chat together.

It’s been interesting listening and responding to participant’s feedback. I remember the class hesitating with some of my creative tasks and ideas a couple of years ago, preferring the more ‘follow along’ movement and routines. Now we’re exploring, improvising, and creating beautiful movement each week and I feel like confidence has increased; confidence with not only the movement but the ways in which their body can work and move.

Feedback regarding the use of props and how that can help with stiffness, work into a particular area of the body such as help to improve dexterity in the fingers and help to lose inhibition when improvising material has been great to hear, as the artist planning the sessions, but knowing they’re walking away from the session feeling more energetic, confident and symptoms have potentially improved too.

Through lockdown, when we realised not everyone from our Dancing with Parkinson’s community could get online, we created DVDs and props packages to send out. We had some wonderful feedback from participants taking part at home.

“I have enjoyed your DVD and also the props particularly like the squeezy heart which I try to use daily to improve my grip. I find combining hands and feet together hard but obviously need to do it to make the brain work! I am really looking forward to returning to the William Loveless hall and I am really grateful to you all for working so hard to keep things going in these difficult times.” Participant of DWP programme

“As you know it is my sister who has Parkinson's and she has been using the props, especially the band. The way you built up the dance sessions was excellent, building on each one and making them very easy to follow. I loved your take on the Tango - perfectly suited to the audience.” Relative of a participant of DWP programme

I’m really looking forward to continuing to dance with this wonderful group of people in Essex, hopefully expanding and reaching out to more people who might want to join us.

To take part in our classes please view our website www.dancenetworkassocition.org.uk

The Dance Network Association's ‘Dancing with Parkinson's’ programme offers dance and movement sessions to those with Parkinson’s Disease and their partners, friends, and carers. We are proud that this programme not only delivers high-quality dance to participants but also allows their loved ones to experience it alongside them.