DANCING WITH PARKINSON’S A Danielle Teale Dance Programme in collaboration with National Hospital for Neurology and Neurosurgery
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For the couple of hours a week when I do a dancing class, it’s the closest I come to not having Parkinson’s. - Dancing with Parkinson’s participant, NHNN
Introduction In Autumn 2018, Danielle Teale began a weekly inclusive dance programme with people with Parkinson’s, in partnership with National Hospital for Neurology and Neurosurgery (NHNN), Queen Square; the largest dedicated Neurological Hospital and a branch of University College London Hospitals, UCLH. The pilot was funded by The National Brain Appeal, Small Acorns Grant Programme. To date, the programme has welcomed 22 individual dancers, across 16 sessions, and has seen people with Parkinson’s join in the artistic development of dance film, contribute to an international symposium on dancing and its value in Parkinson’s, join a unique dance workshop on stage at Sadler’s Wells led by world renowned artist David Leventhal – programme director for Dance for PD ® (a programme of Mark Morris Dance Group), and collaborate with Danielle Teale and Ben Beare (Research Physiotherapist) on a service evaluation into the impact of dancing using mixed methods data gathering.
Aims The aims of the pilot programme were: • to offer a weekly dancing opportunity for people with Parkinson’s, which is accessible, intimate and inclusive, and provides a safe space for social connection, physical engagement and the opportunity for freedom of emotional and personal expression; • to ascertain the potential to deliver a high-quality community dance programme from within the busy clinical environment of a working hospital; and • to pilot a mixed methods evaluation strand as evidence of the need to produce research which draws on all aspects of human life in a holistic and person-centred way, and as a scoping opportunity for Danielle Teale to pilot research methodology for her PhD with University of Roehampton.
Danielle Teale
Programme Narrative The Dancing with Parkinson’s programme began due to the shared interest of Danielle Teale a specialist dance artist and Dancing with Parkinson’s Artistic Director, and Benjamin Beare, a research physiotherapist at NHNN. Working together to develop and apply for the funding, Teale and Beare were able to secure support for the programme within the Neurorehabilitation Unit (NRU) at NHNN. Classes took place in the NRU gym when the area is not in use (during inpatients lunchtime) and the dancers shared a small activities area within the communal ward space for refreshments before and after dancing. Tea, coffee and biscuits were provided prior to the start of class, and sandwiches were provided after class due to the timing of the programme being over lunchtime.
Jaka Skapin
Valentina Formenti
The dance classes were led by Danielle Teale with live musical accompaniment from vocalist, pianist and accordion player, Jaka Skapin. Teale was supported by a mentee dance artist, Valentina Formenti, who applied for the role as part of Teale’s on going mentoring offer in this field, a BA (Hons) Dance student volunteer from University of Roehampton, and a University College London Hospitals NHS Foundation Trust volunteer based at NHNN. The pilot took place over two terms of 8 weeks from October 2018 – March 2019 with a break for the Christmas Holidays. Classes took place weekly and dancers were involved in artistic, interpretative and creative dance, the opportunity to learn material from contemporary repertoire, and to contribute choreographically to the making of a film inspired by the Japanese Crane, which was submitted to the World Parkinson’s Congress and screened in Kyoto as part of an international dance movement in June 2019.
Dancing with Parkinson’s class at NHNN
The dancers also contributed to evidence gathering for a service level evaluation. These took the form of Qualitative measurements using a Wellbeing Scale (Warwick-Edinburg, 2006), Generalised Efficacy Scale (Schwarzer, R., & Jerusalem, M. 1995) and focus group discussions led by Danielle Teale, and Quantitative data capture in the form of TUAG measurements.
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The Dancing with Parkinson’s programme is an important innovation for NHNN. It helps people with Parkinson’s improve their levels of physical activity in multiple planes of movement whilst also providing the social and psychological benefits of play and creativity. Danielle and her team have developed a fantastic group connection and created a joyful environment for people with Parkinson’s to dance and be creative together. The dancers’ responses and findings from the pilot evaluation, have provided evidence that group cohesion and empathic connection are highly valued outcomes from dancing which has shown to provide greater sense of self belief, belonging and acceptance. - Ben Beare, Research Physiotherapist at NHNN
LAUGHTER
SHAPES
STORIES
TRUST
SCULPTURE
CONNECTION
Leslie’s Story Leslie Mapp is a member of Danielle Teale’s Dancing with Parkinson’s programme and has attended classes at the National Hospital as well as St. Joseph’s Hospice (another DTD partner). We asked him what Dancing with Parkinson’s brings him and he generously shared his story: “So there I am, standing in a big, bright room with a dozen other people, but asked to imagine I’m inside a much smaller space, somewhere I can reach out and touch the sides – a sentry box perhaps, or a tiny cabin. My job is to paint it. The catch is that someone is in there with me, and their job is to erase all the painting I do – following my gestures and scrubbing out the marks. And we’re twisting and turning, stretching and darting, supported by the sympathetic rhythms of an accompanying piano; me trying to keep one step ahead of my companion’s mirroring movements - a dab to the floor becomes a stretch to the ceiling, a sweep up the left side becomes a sweep down the other. And we’re laughing and laughing, and I’m amazed at how flexible I’m being, how quick and precise in my movements; because, like everyone else here, I’m living with Parkinson’s disease, a brain condition that disorders movement due to dopamine deficiency. I arrived at class today as my normal shuffling self - slow in gait, stiff in muscles, unsteady on my feet; others came in wheelchairs.
Feeling suddenly out of breath – a reminder of my condition - I become conscious again of my disabilities, but for a long minute there during the painting duet, I was taken out of myself – spirits soaring, moving more freely in space. And this release was not just an escape from reality, it was therapy for reality. I know I will feel benefits for the next twenty-four hours. As I twisted and turned, I was stretching muscles, exercising concentration, improving balance - abilities I took for granted until they started being taken away. If I’ve learned anything from having Parkinson’s it’s the sheer effort that ordinary life takes – physical, mental, emotional and social - effort I was unaware of when I was healthy, immersed in all that daily thinking, doing and feeling – all that action. Which is one of the reasons this class has become so important to me – it’s the closest I get these days to not having Parkinson’s. Surely, though, similar benefits could come from a good exercise class at the gym? What’s so special about Dancing with Parkinson’s? Most often described as a ‘movement disorder’, everyone knows Parkinson’s is much more than this. It affects everything – thinking, feeling, relationships; all your dealings with the world in general. It would be more accurate to call PD a disorder of Being as much as Body. Its onset is devastating – as well as
becoming physically and intellectually slow and shaky, perceptions change; life becomes bland, colourless, veiled. Dopamine deficiency reduces the buzz you get from excitement, the high you get from love, all the pleasure in everyday in life. In fact, so all-encompassing is the condition that it disrupts your whole sense of Self. It challenges the story of who you are and what you do that you’ve been telling yourself and other people all these years. The stories I used to tell were variations on, ‘I teach, I write, I walk and take photographs’. Now, my self-definition invariably begins, ‘I have Parkinson’s’. But here we begin to get to the special value of dance class. Stories need telling, for which you need language, and words only go so far – most of life takes place well beyond the reach of words. Words can convey inner states, but they are always about things, they are not the thing itself - all this evening’s talk about dance is not actual dance. For me, the value in dance class is learning an expressive art - a creative language for both Body and Being, good for exploring and expressing things deeper than words. As the disease progresses, you do learn new words - from medicine, from psychology, from statistics but none successfully conveys the profound depths of the experience. It’s inexpressible in words, it needs speaking not just speaking about. Which is why the particular combination of music, choreography and
infectious enthusiasm that Danielle brings to her classes is so rewarding. Not only does it provide me with physical exercise for the movement disorder, it also provides me with a language for directly expressing my new persona as a person with Parkinson’s. And I’m learning the best way, immersed in company with native speakers. Everyone in the class is fluent in either Parkinson’s or dance, and we’re all learning from each other. Sure, I’d get the same physical workout from the gym, but most probably in an atmosphere of conflict and competition – refuse those limitations, fight that disease. Now that Parkinson’s and I are inseparable, I prefer the gentler language that dance speaks, one of working together, of exploring and expressing just who I am right now - in a language of collaboration, imagination, self. So here I am, still standing in the big, bright room. I’ve painted some of the cabin while I’ve been thinking, but I’m not much caring about the incompleteness. It doesn’t matter, I’ve done a good job anyway in challenging the on-going debilitations of Parkinson’s. Then I hear Danielle call out, ‘Boogie, freestyle’, and we’re off again on another adventure. Last week we were Pina Bausch and next we shall probably be swans on the lake, but for now... let’s all Boogie on; everyone, Parkinson’s style.”
The Dancing with Parkinson’s in Practice Symposium In March, to mark the end of the programme pilot, Danielle Teale was invited to host an evening event focussed on artistic engagement within the hospital environment, the developing practice of dancing with Parkinson’s and the insights discovered through the pilot. This event formed part of a day long Symposium in partnership with Dance for PD ®/Mark Morris Dance Group (MMDG), The Dance for Parkinson’s Partnership UK at People Dancing, Dance Consortium and Sadler’s Wells. The event was attended by an international audience of 75 guests, who heard from Danielle Teale, Ben Beare, guest speaker Alison Williams, and a panel of four dancers from the programme on their experiences of dancing, and plans for the future.
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Panellist Quotes
It’s respect that is of ultimate importance. In this setting no one is inferior or singled out but everyone is supported and has dignity. The collective empathy across the group and from Danielle makes the whole experience very special. We tend to do things TO people, FOR people or WITH people. I don’t very much like having things done to me, and I will usually challenge people trying to do things for me. It’s with people that I like to be; in the dancing with Parkinson’s space we are in constant togetherness.
A great team. Absolutely loved your collaborative style to evaluate your pilot. Lots of people could learn from you about how to involve patients / dancers / participants in your evaluation and development, bravo. A big thank you for the evening event last Thursday, for your warm welcome and many congratulations on your various projects. I was encouraged and impressed by the collaborative nature of your work Thank you for a tremendous session, all aspects, it was a pleasure to meet and discuss DfP and the experiences your class members had engaging with your work and research. It was so very positive to hear from the people at the heart of your practice and this work…essential. It was such a pleasure and honour to attend and to hear you, Ben and your dancers speak about the impact of your work. What a fantastic programme you have and the films and the feedback from your collaborators are living proof on the difference you are making, not just as a teacher of a Dance for PD programme but as a person. I thought it was a remarkable, moving evening that conveyed perfectly what you are achieving and seeking to further achieve with the dance classes. Congratulations on the recent Symposium! It was a truly informative and compassion filled evening. It was lovely to meet you and your speakers. It seemed so natural to have the dancing at the opening and midway too, to move and meet people through dance, as well as hearing the personal stories later.
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Audience Responses
Anne’s Story Anne has been dancing in Danielle’s Dancing with Parkinson’s programme at the National Hospital for Neurology since September 2018. In this personal account she shares the value of dancing in her life living with Parkinson’s…
“I am one of a rapidly growing group of ‘Parkinson’s People’ across the world who face the reality of living with Parkinson’s; an incurable and degenerative chronic illness. My initial reaction to the diagnosis was of shock. somehow brought this on myself (as one of our ‘friends’ suggested, little realising the distressing impact of his wo those early days)? At the time my husband and I were expats living and working outside the UK, and it was difficu local support or information. I read everything I could find in English on the internet to make sense of this strange The key advice was to exercise, so I joined a gym, took up Pilates, used the stairs rather than use the lift; but no o me knew very much about Parkinson’s or what I needed, and I often felt like a ‘special case’ to be handled with c wishing to be a burden I kept my thoughts and worries to myself, and looking back I put a lot of energy into playi symptoms and pretending that I was fine when emotionally I really wasn’t.
Shortly before we were due to return to the UK, and purely by chance, I was told about a Parkinson’s Dance clas sheltered housing complex with people much older than myself. I decided to join the group and loved it from the warmly welcomed despite my limited language skills, and found the sessions really supportive. There was no nee comment on our respective health situations; after all that was what brought us all there. I could take part in the e that my teacher had been trained to work with people with Parkinson’s. If my tremor showed or I got the steps wro matter; I wasn’t the odd one out any more, and for the session at least I could concentrate on the music and dan ‘normal’ again.
On our return to the UK, finding another dance group was a key priority. Through an evening physiotherapy eve heard about Danielle’s plans for a new group based at the hospital, and I was fortunate to be invited to join them positive feeling of belonging to a supportive group with a shared experience and a positive, experienced teacher similarly enthusiastic and skilled mentees) has been vital to my own well-being, and by extension to my husband confidence returned, and I found that seeing the situation positively can make things so much better not only for also those of our family and friends.
Danielle’s lovely smile, enthusiasm, creativity and empathy shine through, and every class is a pleasure. As dance patients we are able to let go of our worries and lose ourselves in the exercises. No one is singled out for special where necessary we can count on a supportive arm to hold, or a few foot stamps to encourage us if we ‘freeze’ f minutes. Everyone is respected and valued for themselves and their contribution.
I realised how important the weekly session is to me, when some visitors asked me to join them in an excursion o Thursday morning. My immediate response was ‘but I can’t possibly miss my dance class’! The value of our Dancing with Parkinson’s class goes far wider and deeper than the physical benefits of the exercises. Yes, we stretch and strengthen our muscles and that is important. But we also smile, laugh, support and care for one another. By leaving our Parkinson’s ‘baggage’ behind us for the duration of the class, it feels so much lighter when we have to pick it up again. Long may the classes continue and many thanks from a grateful dancer!”
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Findings The Dancing with Parkinson’s in Practice Symposium gave us an opportunity to share our pilot evaluation findings and the conclusions we’ve made about moving forward with future research and delivery of the programme. Danielle Teale and Ben Beare were mutually interested in combining qualitative and quantitative methodology to ask the question ‘does dancing provide greater send of efficacy and individual sense of ability and agency in people with Parkinson’s?’ In her experience of leading dance with people with Parkinson’s, Danielle Teale has observed increased self esteem and greater movement confidence, leading to a positive improvement in social connection, emotional understanding and sense of contribution and connection to society. Therefore Ben Beare and Teale embarked on research that aimed to evidence this observed impact. Research Discussion: There is growing evidence that regular periods of moderate to intense exercise may positively influence the neurodenerative disease process in Parkinson’s disease, via production of brain derived neurotrophic factor (Hirsch et al., 2018). Sports medicine studies have shown the influence of music on reducing perceived exertion (Karageorghis et al., 2006). A particularly interesting phenomenon of music and activity are ergogenic effects (Karageorghis et al. 2011). People who synchronise activities with high tempo music produce greater outputs during exercise (Karageorghis et al. 2011). The Danielle Teale Dance, Dancing with Parkinson’s programme, combines movements in multiple anatomical planes with live music, challenging creative thinking, multitasking, providing cognitive challenges, and introducing imaginative and playful interpretative movement. In addition, Danielle ensures there is socialising time both pre and post classes to nurture a supportive and fun environment, develop relationships between the dancers and break down the hierarchy of relationship that usually exists between ‘expert’ and ‘patient’ within a hospital context. Therefore, the programme appears to have the potential to have physiological, social and psychological benefits. Method and Results: Carried out by Ben Beare, the Timed Up and Go (TUAG) test which involves participants standing from a chair (without arm rests), walking 3m and then returning to sitting was used as a measure of ambulatory function. It has been shown to have predictive value in relation to falls (Kang et al. 2017, Filho et al.2011). In people with Parkinson’s a difference of greater than 4.5 seconds between a TUAG and a TUAG with a duel task (TUAGdt) (counting backwards from 100 in 3s whilst completing TUAG) indicates a higher risk of falls. 12 participants with symptoms attended the first term of classes of which 7 elected to be part of the data capture. The results from these 7 participants, A-G are presented below. These 7 participants were all over 65 years and were experiencing symptoms on the Hoehn and Yahr scale from 2-4.
Based on this cut off of 4.5 seconds difference between TUAG and TUAGdt; 5/7 participants showed a high risk of falls at baseline and 4/7 were high risk of falls at 8 weeks (See Graph 1 and 2); blue indicates improved speed and red is reduced speed. Note participants D and F were unable to do the TUAG with a dual task at baseline or at 8 weeks. Graph 1: TUAG change (seconds) 8 weeks
Graph 2: TUAG +Dual Task change (seconds) 8 weeks
In addition, the Warwick Edwards Wellbeing Scale and the General Self Efficacy Scale was completed by participants at baseline and at 8 weeks. The results are presented below in Graph 3 and 4. Red indicates a worse score and blue indicates an improved score. Graph 3: Warwick Edwards Wellbeing Scale change 8 weeks
Graph 4: General Self Efficacy Scale change 8 weeeks
Focus Group Results: Danielle Teale used a responsive focus group technique to open dialogue with the dancers, not just to hear their thoughts and feelings about the programme, but also to foster personal relationships and connections between the dancers and herself. The focus groups consisted of 5 – 12 participants, most of which also elected to be involved in the other patient related outcome measures. It’s interesting to note however, that this more holistic research method of conversation as a group, was more appealing to the dancers, and attracted higher participant numbers. The conversations took place in a separate room outside of the main dance space and were conducted over food and drink refreshments. The dancers were encouraged to talk amongst themselves in a conversational manner, as well as answering questions purely from their own perspective. This form of group conversation enabled ideas to evolve within the group, and dialogue to follow patterns of agreement or contrast in people’s approaches and responses.
The dancers’ comments have been categorised into three clear areas of interest pertinent to the research question.
1. The Value of Empathy and Inclusion 2. The Importance of Playfulness 3. Expanding Emotional Expression and Understanding
To a lesser extent, the following categories were also of interest to the group, and would be interesting to explore further in relation to how environment and leadership approach shape and foster the feelings of empathy, play and emotional expression which have been highlighted as important in the themes above:
4. The Environment of the Hospital as a Setting for Dance 5. Approach of the Dance Artist
1. The Value of Empathy and Inclusion The dancers agreed that this group provided a safe space for people with Parkinson’s, in part because Parkinson’s was not mentioned. This was fundamentally due to the specialism of the space – because it was for Parkinson’s, it did not have to be about Parkinson’s. Empathy also extended to the group cohesion and connection, and the fact that this group exists provides strength and a feeling of belonging. This was not only true of the people with Parkinson’s, but was echoed by carers and guests in the space.
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We all have different problems, different symptoms but that doesn’t matter, in dancing it doesn’t define us. I’ve never been in a class structure like this, ever. I enjoy the company and enjoy the class. It’s nice to connect with different people. Coming to a group is not usually my scene, I like to be the head of a group, but I find this really invigorating. We develop a kind of compassion, empathy because we have something in common even though we are all different, and there are so many different ways of having Parkinson’s, you see it (Parkinson’s) but it doesn’t matter, you just accept that we’re here for the dance, and we’re getting exercise, the social side, the acceptance the memories. When you see people like W, she’s so strong, she’s Olympian. She’s a lesson to us all.
It is very enjoyable, I make sure I’m here because I’ve set I aside in my week, I wouldn’t want to miss out on the crowd. I love it for the company, companionship, we are doing something useful for our bodies at the same time. I didn’t want to join a group that just sits and discusses their problems. I used to go to a Pilates class but the teacher used to say A. you don’t need to do this if you can’t, it made me feel singled out, whereas we’ve all got Parkinson’s here so there’s no need to mention it and you just provide quiet help or support if you think it’s needed so it doesn’t need anyone to talk about it. It’s definitely better when you’re all in the same boat. We’ve bonded closely as a group. I look forward to seeing people, and the enthusiasm of the classes is infectious. The carers have such fun as well, everybody is involved together. It’s really important that we are a peer group, we are not in competition with each other. Everyone here understands instinctively, beyond words, what we are each feeling. We can support each other without being intrusive.
2. The Importance of Playfulness The Dancing with Parkinson’s sessions were commented as being uplifting, positive and joyful for the participants. This was put down to the playful learning approach, in which no right or wrong existed. Fundamentally this is down to the approach of the dance artist and the inclusive practice that informs the way the programme is led. It is important to note that no distinction is made in participation criteria, and that people of all ages, and stages of Parkinson’s were invited to attend classes which were adaptable to all needs.
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The playfulness in Dancing with Parkinson’s gives us permission to fool around - we are used to learning situations being strict and disciplined, but instead you can have such fun. It’s like going to a party every week - you can just be yourself, nobody is judging you. Your body responds more positively when you are enjoying yourself. My body is responding more in dancing with Parkinson’s because I’m enjoying what I’m doing. We have so little chance in our home environment to relax, we are always trying to do things that we are unable to do, so it’s brought home to us what we can’t do... here we can just try and everybody is having fun. I think that’s absolutely essential, music and fun... Having fun connects us more with others so the classes are more sociable and we really look forward to it. This is an environment where you can have fun, you’re allowed to... In everyday life you can’t do silly things! But in dancing with Parkinson’s we’re allowed and that is so liberating. Dancing is like a playground.
3. Expanding Emotional Expression and Understanding Dancers recognised that moving the body in an expressive way unlocked a feeling of personal connection, physical and emotional understanding of themselves, as well as more confidence interacting with others in an emotionally sensitive way. This was a very powerful realisation for some who recognised that Parkinson’s was making them more isolated.
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It awakens different feelings and sentiments, I feel more in contact with my spirit, my soul my heart, my memories. When dancing, I can feel more warmth, and feel cheerful as well. The exercises can sometimes make me feel emotional, it is very powerful, I start thinking about my life, I’ve always liked to dance, but now it is difficult to dance, its something I like very much, and I discover a new way to dance here with you, it’s connecting me to my past and my natural spirit and soul. Dancing affects you emotionally because it’s a very expressive art form, for me the benefit of that is that it expresses beyond the reach of words – I don’t have to write it down, I don’t have to talk about it, I don’t have to express my experience except in the moment; and in the big smile on my face when I come home . I was surprised at how emotional it was when you dance for yourself but then you realise you’re not dancing just for yourself, there’s a team of a class of people behind you, and you are dancing all together, you are in a sense leading them… when that realisation came it was really quite overpowering, it’s a wonderful feeling. I’m more aware that when I go out, I’m more able to talk to or relate to other people. You can engage with people; I find that easier than it used to be.
4. The Environment of the Hospital as a Setting for Dance
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The space that we dance in is important, but for me the space is in your own mind. It doesn’t matter where you are, it’s the playroom that you create in your mind in the dancing environment that matters. People come here and feel safe... the dancing is physical but it also gives us a chance to speak, to have conversation, which is an added bonus of connection with others.
5. Approach of the Dance Artist
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If people have difficulties you just step in and help them, it’s not that you don’t allow them to sit it out, if they wanted to they could, but you support people to participate without making a fuss, you spot what needs doing and you do it. If somebody steps in, I appreciate it, they just offer an arm, it’s not forced, it’s friendly.
Discussion
What has been most interesting about this small study is the disparity between what the patient related outcome m discussions reveal. A large proportion of the participants self-rated their well-being and self-efficacy on the patien participants in focus groups on the positive impact dancing has had on their lives. In conversation with psycholog time. It is possible, after 8 weeks of moving, sharing and exploring emotional expression together, that the partici possibly not related to the intervention. This pilot has highlighted the mismatch between qualitative testimonials a
In addition, the dancing involves encouraging movement in multiple anatomical planes, dancers are challenged emotional expression, coordinate upper and lower body as well as achieving cognitive and imaginative challeng and this measure is limited when analysing improvement in motor function for a multifaceted and complex activit
Further research is required to understand what participants value about Dancing with Parkinson’s, and we would sophisticated movement analysis methods in the future will help facilitators of dance interventions understand if p kind of intervention. Similarly, an efficacy scale for dance, might be developed, which could address the complex
measurements demonstrate about the participants efficacy and wellbeing, and what their focus group nt rated outcome measures (PROMs) lower at 8 weeks. This contrasts with the insight given by the same gists we have discussed the challenges of written scales that exist to pinpoint feelings at a particular moment in ipants would be able to give more ‘realistic’ responses at 8 weeks than at baseline, and the drop-in score was and the selected PROMs.
d to increase in the amplitude of movement, given complex multitasking sequences, offered an opportunity for ges alongside motor challenges. It is not certain this would directly translate to changes in TUAG performance ty such as dance.
d suggest the analysis and development of more appropriate PROMs measures is needed. It is likely more participants movement amplitude, fluidity and risk taking is improved across multiple anatomical planes after this xity of dance movement and skills development. Written by Danielle Teale and Ben Beare
Danielle Teale presents the programme findings at the Dancing with Parkinson’s in Practice Symposium in March 2019.
DANIELLE TEALE Danielle Teale is an industry leader in dance and Parkinson’s practice and widely recognised for her ground-breaking contribution to this field. danielleteale.com Teale’s artistic practice is of the highest quality and recognises the unique potential and contributions of all dancers with Parkinson’s. All her sessions are led to live music, with an adaptive, inclusive approach, making them suitable for all stages of Parkinson’s, using seated and standing activities suitable for a wide range of ages and experiences.
BEN BEARE Ben Beare is a Neurology Physiotherapist and Research Physiotherapist at Queen Square. He previously worked on the STEPs study from 2016 to 2018 which examined the effectiveness of functional electrical stimulation on improving walking speed and falls risk in people with Parkinson’s Disease. During this period Ben became aware of many emerging innovations through discussion with his participant cohort. This prompted him to make contact with Danielle Teale, and together they applied for a National Brain Appeal Small Acorns fund to run Dance for Parkinson’s classes at Queen Square. Ben continues to support the continuation of the dancing programme at Queen Square. He is also currently one year into a Stroke Association funded three year post graduate fellowship examining the onset of shoulder pain in stroke survivors.
Ben Beare presents the programme findings at the Dancing with Parkinson’s in Practice Symposium in March 2019.
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It’s really important that we are a peer group, we are not in competition with each other. Everyone here understands instinctively, beyond words, what we are each feeling. We can support each other without being intrusive. - Dancing with Parkinson’s participant, NHNN
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Your body responds more positively when you are enjoying yourself. My body is responding more in dancing with Parkinson’s because I’m enjoying what I’m doing. - Dancing with Parkinson’s participant, NHNN
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Dancing has benefits for all the components - physical, mental, emotional, social - it’s improving each of those dimensions and gives you such confidence. - Dancing with Parkinson’s participant, NHNN
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Live music makes such a difference. When the piano is playing for you in the background, you can get in tune with the natural rhythm of life, and that’s something we have lost with Parkinson’s. - Dancing with Parkinson’s participant, NHNN
The Future We are delighted that through support directly from the UCLH Trust, we will be continuing Dancing with Parkinson’s in 2019-20. However, we need your help to keep this programme going beyond April 2020. The National Brain Appeal are working with Danielle Teale Dance to provide a special fund for future sustainability of the Dancing with Parkinson’s programme. If you’d like to support this fantastic work at NHNN you can donate by visiting our Just Giving Page and donating: https://www.justgiving.com/fundraising/dancing-with-parkinsons-nhnn Or why not set up your own fundraising event or activity... Just set up a special page on Just Giving and select The National Brain Appeal as your charity. Make sure you clearly state in your event ‘Story’ that your fundraising is for the Danielle Teale Dance, Dancing with Parkinson’s programme. You can contact us at dancing.parkinsons@gmail.com if you’d like help with your fundraising, and we will help promote your page to our mailing list and on social media. Thank you!
Links Dancers from NHNN in a film submitted to World Parkinson’s Congress Japan https://www.youtube.com/watch?v=dqgDs9W4Pco A film documenting the impact of Dancing with Parkinson’s at NHNN https://www.youtube.com/watch?v=BHF1TDiOI64
Those who made this possible...
Photo credits: Jack Thomson IMAGE MAKER and Sara Hibbert
@tealedanielle @danielletealedance teale.danielle@gmail.com
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