Margherita:
“ParkinZone” is a no-profit association which you have established in 2006 with the goal to empower patients and treat them by means of activities aimed to improve emotional and physical wellbeing. Among these, we got particular interest in the Sail4Parkinson (S4P) and the “Virtual Hospital” project.
I am keen to know more on how those activities were developed, the clinical mainstays and future perspectives. What have inspired you to create this project? Who were the main promotors?
Nicola:
Since starting to work with people with Parkinson’s disease (PD), I got particular interest in developing innovative models of care that could deal with the complex clinical needs of our patients, while providing continuity of assistance. When ParkinZone (www.parkinzone.org) was established in 2006, I have involved actors and musicians who set up theatre and music classes for PD patients. These activities became popular among patients as they could work on motor control of their symptoms and, in the meantime, rediscover their emotional side. Indeed, we were also able to demonstrate that such approach was effective on motor and non-motor symptoms, including anxiety, depression, and apathy[1, 2].
Besides medicine, I have personally a great passion for surfing and sailing. I thought to combine artistic activities such as theatre and music, with the sailing training, extending this possibility to caregivers too.
The first edition of Sail4Parkinson was held in 2016 with four patients participating. Currently, the program involves sailors, surfers, theatre actors and directors, musicians, neurologists, psychologists, and physiotherapists. Patients attend sailing classes in the morning and theatre and music classes in the afternoon. We were amazed to see that such program provides immediate benefit on mobility and mood. Interestingly, patients quickly learn the principles of sailing and, at the end of the week, they can conduct the sailboat on their own. We also observed that sailing could be a fantastic opportunity of rehabilitation as PD patients are forced to move in a small space such as the boat and in coordination with all the other sailors. ParkinZone was the promoter of the project, which was also supported by donations from private donors, a few pharmaceutical companies, and the Italian Academy for movement disorders (Accademia LIMPE-DISMOV).
Margherita:
Is Sail4Parkinson restricted only to patients in the early stage? Are there any age restrictions?
Nicola:
Initially, we restricted the participation to people in early and intermediated stages. However, upon building up experience in this program, we also involved patients with advanced PD and with Deep Brain Stimulation, as well as a few with mild cognitive impairment who attended with their caregivers. Each of them has different goals from the S4P program but ultimately, their expectations were met independently form disease stage
Margherita:
Since its creation, you have elaborated four main mainstays that are the principles of S4P. Could you briefly explain these 4 mainstays?
Nicola:
The 4 mainstays of S4P are 1) Sailing; 2) Theatre and 5 actions; 3) Meditation; 4) Nature and harmony.
We teach them the safety rules and the principles of sailing and how to move in the boat. They learn how to manage the boat according to the weather conditions together with the others as a team. The “5 actions” is a warning up and meditation technique thought for actors, adapted for patients and caregivers with the aim of stimulating concentration and creativity as well as being able to perform as a member of a team. During this training, the participants play with their body, voice and expressivity to discover new abilities, accompanied by live music. Every day, the group undergo meditation and psychological workout guided by a psychologist. PD patients struggle to cope with stress and acceptance of their disease and such work is aimed to improving their emotional control. Finally, the western coast of Sardinia (Sinis and Montiferru) is the perfect setting for such program with its uncontaminated nature that contributes to stimulate different sensory modalities and making the patients regaining confidence in their body.
Margherita:
Do you believe that the patients have a longstanding benefit after having participated to a S4P session? Do you have any suggestions to help patients/health professional in bringing “the message” at home?
Nicola:
We have not yet systematically assessed the long-term impact of the S4P on patients’ quality of life, but after this experience patients seem to cope better with the disease and the relationship with their carers improves. Overall, I believe that the learning skills acquired during this experience might have a long-standing benefit if the patient is able to interiorize them, being an incredible non-pharmacological approach.
Francesca:
During the 2020 Covid-19 lockdown, you have relentlessly worked together with four patients and one psychologist to provide daily support to people with PD and their caregivers who were left inactive and isolated at home. Can you tell us about this innovative initiative which is named the “Virtual Hospital”?
Nicola:
When the COVID-19 lockdown started, we were forced to interrupt all ongoing complementary therapy projects. Furthermore, the hospital stopped outpatient clinics for more than two months, leaving many people isolated and without proper treatment. Thus, we decided to transfer many of our activities online and make them available in live and recorded format also for those not followed up by our hospital. We created the ParkinZone Virtual Hospital, which offered free of charge daily activities, including physical and cognitive activities (Pilates, Feldenkrais, Mindfulness, Dance, music, theatre, writing and English classes) for the whole PD community throughout Italy.
Margherita:
One of the highlights of the Virtual Hospital project, is the “Question Time (QT)”. What is it special about the QT sessions? What are the goals of the QT?
Nicola:
The QT is a 90-minutes session on Zoom, during which a health professional or a neuroscientist gives a short talk about a clinical or scientific topic related to PD. These sessions are very informal, and patients formulate their questions in the chat box or sometimes speaking up. They have been so successful among Italian PD patients that I proposed to Francesca Morgante who to make them available for UK patients on a weekly basis. For the Italy-UK QT, live Italian translation is provided by one Italian PD patient who is a professional interpreter in life. Also, the technical support and the organization is handled by other 3 PD patients, without whom the QT would not happen. Finally, many colleagues from Italy and around the world have volunteered and participated to the QT. The QT have two main objectives: 1) to empower patients by making them knowledgeable about their symptoms and how to report them efficiently at the time of consultation; 2) to disseminate findings from scientific research. We think that the second goal has a particular value also for us as neurologists. Indeed, when communicating about research studies, we have an amazing opportunity to understand what is meaningful in the research setting to patients’ life. It also forces us to be intellectual honest with them.
Francesca:
Is the Virtual Hospital still working after the pandemic crisis? Which are the perspectives?
Nicola:
Both the Virtual Hospital and QT were very well received, with drawing audiences (nearly 10000 participants in a year). We realized these are powerful tool to reach a vast group of people and this why we are continuing such activities. Also, they are a great example on how patients and neurologists can work together to help other patients, but also to improve the understanding of PD in health professionals.
Francesca:
How do you conceive participative medicine? What does is mean for you to empower our patients with PD?
Nicola:
Participative medicine means being part of team, which involves different health professionals and the patients. They are allied to gain a better understanding about the disease but also to reposition the person with PD in the society, allowing to reconsider herself/himself as a human being and not a sick subject. This might happen by empowering people with PD, which means to provide tools to them to make informed choices and, more Patients Participating in Sail4Parkinson Program importantly, let them see the disease from a different and constructive perspective.
Acknowledgments
I wish to thank all the people who helped me to build up this story: my family, my best friends Imogen Kusch, Francesca Morgante and Silvia della Morte, Daniela Meloni and Limolo Activities, the patients and all the people who work with Parkinzone (www.parkinzone.org) and our partners in Fuerteventura "Fuerte a la Vida, Parkinson No Limits".
References
1. Modugno N, et al. Active theater as a complementary therapy for Parkinson's disease rehabilitation: a pilot study. ScientificWorldJournal. 2010 Nov 16;10:2301-13.
2. Mirabella G, et l. Theatre Is a Valid Add-On Therapeutic Intervention for Emotional Rehabilitation of Parkinson's Disease Patients. Parkinsons Dis. 2017;2017:7436725.