Do not babysit your loved one’s suffering from Parkinson’s disease

- says the founder of Movement Mantra, Vonita Singh

Movement Mantra has been conducting weekly workshops for patients of
Parkinson’s disease, arthritis and senior citizens to boost their movement through
dance, yoga and meditation. Founder of Movement Mantra, Vonita Singh, explains
the importance of intervention for people living with movement disorders in an
interview with Bandana Shah of Yoga & Wellness.

What gave birth to Movement Mantra?

I lost my father to Parkinson’s. His symptoms began with twitching and were advancing towards loss of movement. Initially, however, we were not able to pin point what exactly was wrong with him. Though he was aware of his inability to carry out certain simple physical tasks, he was reluctant to visit a neurologist due to the general stigma surrounding neurological issues back then in India. This caused a delay in treatment. We convinced him to get checked by a general physician who referred him to a neurologist. It was then that he was diagnosed.

We were relieved to learn that his condition had a name so that we could begin intervention. Parkinson’s is one the most common neurological disorders. While we learnt a lot about the disease during dad’s treatment, we also made several mistakes handling him. Bradykinesia’s first symptoms would cause tremors that brought a slowness in his movements. For instance, it would take him quite long to reach a glass of water on the dining table during dinner. One of us would simply pick it up and hand it over to him, restricting his mobility. We would pity him and ended up babysitting him – feed and dress him and comb his hair. We would let him skip physiotherapy sessions whenever he complained of pain. I wish I had appreciated how important movement is and encouraged him. Within three years, his arms were completely locked because we did not let him extend them.

For Parkinson’s patients, the command from the brain to the muscles is restricted. And we (family members) further restrict the movement by babysitting our loved ones.

Two of my dear friends’ parents had Parkinson’s too. I realized we were all making the same mistakes unintentionally. After dad passed away in 2009, I recalled our experience with Parkinson’s and wanted to reach out to those in similar situation.

The golden rule for people with Parkinson’s is movement! Even if they are slow, they need to stretch.

How did you connect with Parkinson’s patients in Dubai?

I realized the importance of movement for Parkinson’s patients. My dad was supposed to move his wrist up and down, open the arms, expand and move it up in the air. The movements done during a physiotherapy session are monotonous; it is a one-on-one (patient-therapist) activity happening in a clinical set up. As Parkinson’s is not a curable or a short-term condition, a patient can hardly be motivated to attend physiotherapy sessions.

I have been doing Kathak (Indian classical dance) since the age of three. I figured we could do the movements taught during physiotherapy along with a song. One is gracefully learning a piece that has an aesthetic element to it. The lyrics, rhythm and choreography connect the mind and body through movements. With that thought, I headed to Brooklyn and attended workshops on dance therapy for Parkinson’s patients. That further empowered me to use dance as an intervention tool for people with Parkinson’s.

However, when I got back to Dubai, I had no subjects. My next mission was to find people with Parkinson’s. With excuses like buying medicines for a made-up relative suffering from Parkinson’s, I asked several pharmacists if there were more such patients around. I even went to physiotherapy clinics, rehabilitation centres and hospitals with random excuses such as inquiring about the facilities available for a vising patient. The exercise helped me learn that there are many in UAE living with the disease.

Then on Facebook, I came across a Parkinson’s support group, ‘Live and Love Life’, being managed by patient Gity Bazargan. Over a cup of coffee, I asked Gity if she would be my student. She readily agreed as she loves dancing. I would visit her often and we enjoyed doing some Kathak elements. The basic foundation of this dance form, tatkaar/teentaal (footwork to beats), helped Gity with motor movements.

While Gity wanted to connect with more people like herself, she had physical limitations. And I was looking to try dance therapy with more patients. So our connection helped us both expand together for the cause. We tried reaching out to patients hiding behind closed doors. Many shy away from public spheres fearing they will be mocked at for having movement issues. Indeed, society at large is not aware of the visible symptoms of Parkinson’s and perhaps would not accept the patients’ situation (for instance, many would not understand why one is having tremors or cannot move faster in a crowded space to make way for others). This forces several patients to live without any intervention or the opportunity to socialize.

A local journalist, who came across Gity’s online group, contacted her for an article on people with mobility challenges. I joined the duo and requested the former to mention in the article an upcoming meet for Parkinson’s patients along with my contact details. As soon as the article was published, I started getting calls from patients and family members interested in attending the meet. That’s when seven of my first students gathered at my house for an overwhelming experience. We then formed an informal group and met on a weekly-basis for dance therapy. With time, more members joined.

Every year, around Parkinson’s disease awareness month in April, some news about the group would be published locally and more people would join us. I connected with around 50 patients from various nationalities at a personal level. I have come across many families who were in denial about their loved one’s condition or the patients themselves were shy. I have personally been to their homes to persuade them. I remember visiting one such patient, Zaver. I helped him get up from the chair using a trick that I learnt in Brooklyn. He was surprised and started coming for the classes. He attended every class till the day he passed on.

Now, around 12-15 members attend the weekly classes.

My students and their family members say that the patients are regaining their lost independence. The disease was making them largely dependent, which they found depressing and isolated themselves.

Chandrakant Shah’s wife Damaynati, 72, has had Parkinson’s for more than 10 years. She is one of Movement Mantra’s oldest students. Chandrakant shares, “We know her troubles will not go away, but because she attends Vonita’s sessions and does yoga at home, there is a positive impact. This has been preventing her condition from worsening. She is capable of doing all her chores by herself.” Meanwhile, Damayanti was showing her colouring book to other patients after a session with Vonita. No one would say that the person who precisely filled in the colours within the given borders has no control over her shaky hands and legs.    

The group is not a clinical nor just a therapy forum. It is about connecting with people who are like you. Some of their conditions are worse than yours. My student Rashmi has had Parkinson’s for 20 years and she uses a walker for support. One day, however, she walked into the class without any support. When asked how she managed, she said that she had lent her walker to a fellow student who needed it more as his attendant could not come that day. Helping each other gives them a sense of achievement, satisfaction and an acceptance in a new family. This has made a difference in their lives.

How did Movement Mantra get its name?

I did not want to call the platform a support group for people with Parkinson’s. We considered names like Move for Parkinson’s and Parkinson’s Movement. I wanted to use my dance elements and yoga for a wider section of people with mobility challenges. Once during a class, I told my students movement is your mantra, you need to move.

Mantra means ‘from the mind’ in Sanskrit. We need to be mindful of our movement. And movement has to be done on a regular basis. Thus, Movement Mantra.

Takeaway?

Parkinson’s disease not only brings about physical challenges but also psychological and emotional ones. Movement Mantra has been able to make a difference at physical, emotional and societal level. I emphasise on Parkinson’s patients being accompanied by their partner, child or caregiver so that they also become empowered and help the former with movements even after classes.                                                                          

We try to accommodate a fun day every month. We go a beach or a park. Recently, we went for a painting session at a studio and often have over a Reiki or Tai Chi practitioner.

How do you manage logistics for the sessions?

Initially the classes were held in my house. We grew as a group but I did not have any backing. In UAE, one cannot provide such classes for free. So, for last two years I paid the annual fees of AED30,000 for a license.

While the arthritis group comes to my house for their sessions, others come to a community hall in Bur Dubai and another space in Wafi Mall provided by VFS Global. Emirates NBD arranges RTA cabs to pick and drop patients for the classes. Earlier, we used to have all the classes at my house and I would get busy calling participants to pick and drop others on their way.

Now, I have been trying to generate some revenue through fees in order to coach at least two more trainers as I cannot be present for all the classes at various locations. Many facilitators join us on and off on a voluntary-basis. We need more revenue to gather sustainable logistics.

Does dance therapy work for patients of other conditions?

My elder daughter suffers from severe Rheumatoid Arthritis and she is under the care of Dr Humeira Badsha, Consultant Rheumatologist. Out of the blue, Dr Humeira suggested that she would send some arthritis patients to me for the dance classes. She said that one of her patients had attended my dance classes and she was benefitted, so others should join too. As we connected the dots, we found that her patient was among the group of women at Yoga Ashram where I taught Natya (dance) Yoga.

I, however, was not very confident about expanding the movement sessions for other patients as well. So I met the arthritis support group members and suggested they first try the session and decide if they felt better. They liked the sessions and started coming twice a week.

Meena Pillai was diagnosed with rheumatoid arthritis in 2014 but she was unable to accept the disease. She threw away her medicines and actively looked for other forms of treatments like Ayurveda and homeopathy, but her condition worsened. She also tried some yoga classes, but would end up in more pain as the instructors followed a set regime which was not suitable for patients like her. “I started attending Vonita’s dance classes in late 2015 and have felt much better since. She is highly empathetic as she understands the pain. She asks us to listen to our bodies and move accordingly. The mornings are tough as my body is very stiff. With the technique of massage and warming up the feet that Vonita has taught us, I can gradually get myself out of bed and the day gets easier,” says Meena.  

Mandana Taktar, who learns yoga and Kathak from Vonita along with seven of her Iranian friends, says, “I was battling with depression and tried various workouts at gyms and yoga centres but it did not help. The movements and music that Vonita uses does the magic for us. I feel much better now and am off medications.”

You have arthritis as well?

I was diagnosed with seronegative rheumatoid arthritis at the age of 17. The juvenile arthritis was advance so the doctor suggested I stop dancing. I had to wear kneepads, a collar on my neck and a belt on my waist which restricted me from bending.

One doctor, however, told me that every joint needs exercise and I should not stop dancing.

He told me to be mindful of how and when to move. Relived, I resumed dancing and did a lot of yoga. Now I am a certified yoga teacher as well. I have realised how crucial dance and yoga have been in my life.

How have you been managing life with arthritis?

During my late teens, my mom would give me with massages and warm water baths. I also took ayurvedic treatment and medications, including painkillers. In general, the illness did not affect my day-today life. I started doing yoga with my dad and gradually went back to dancing and regained mobility. Since then I have been diligent with the fitness routine.

Nine years ago, I joined a Kathak institute in Dubai but I could not even go up the stairs with ease. As I climbed one step at a time, the impact on the ankle and knees was harsh.

Stretches and mindful movements have helped me. I do feel the impact when I exert, but I would not complain. My body tightens and aches if I do not workout regularly.

Movement is medication to people with Parkinson’s and arthritis. If we are aware of what the body needs and give it a capsule (of mindful movement) daily, the pain is at bay. Mind and body connect through yoga and dance helps overcome physical challenges.

How do you plan your classes?

The dance sessions include warm up with tatkaar, stretches with yoga poses and dance choreographies.

Learning Kathak is like progressing to higher grades in school. The beats you are dancing to progresses from slow to fast, really quickly. But now, I am going back to basics. What I learnt was all mechanical; for performing in school and competing. After 30 years of dancing, I am learning the true essence of dance only now. Finally, I am doing the real dance and it is a beautiful tool. The grace that dance brings is important. Moving with ease is graceful. It helps calm people who are in pain.

I chalk out a choreography which people with various mobility challenges can do. The basic moves are suitable for all. Other moves like sun salutations can be done on a chair and, if possible, on a mat.

I tell my students that there is no competition in the class, but one with yourself. Today if your hand goes up 30%, strive for more in 10 days. Work on it daily. Someone else might do 90% and it’s ok. We are all here to move together. Enjoy what you are doing. There are no corrections. Listen to your body and do not exert beyond a point.

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