An interview with Mitra Sen Mazumder from Parkinson’s Disease Patients Welfare Society Kolkata, India on December 13, 2023 by George Ackerman, Ph.D, J.D.
Biography
I am Mitra Sen Mazumder, Secretary, Parkinson ’s disease Patients Welfare Society Kolkata (PDPWSK). I am a retired teacher in Management and a writer. My brother was suffering from Parkinson’s disease since more than 25 years and succumbed to this disease in August, 2022. I have seen his sufferings and all the stages of this deadly disease and the agony of a caregiver. So give some respite to the caregivers and patients I along with Dr. Hrishikesh Kumar, Vice Chairman of Institute of Neurosciences of Kolkata formed this support group. In 2014.We conduct multidisciplinary therapies at our centers offline and online. Our motto is to make people aware of the disease. I am hereby attaching the link of the video about our activities.
Please tell me a little about your background.
I am a retired professor teaching Management and living in Kolkata, West Bengal, and the Eastern part of India. My brother was suffering from Parkinson’s disease since 25 years and succumbed to the disease on 13th August, 2022. It was a case of YOPD.When he was undergone DBS I came across his doctor, Dr.Hrishikesh Kumar, and at that time we decided to form a support group in this part of India as a good number of people are suffering from this disease here.
Can you tell me more about your organization?
The name of our organization is Parkinsons Disease Patients Welfare Society Kolkata. We are having a Facebook page in the name of PDPWSK. We are the support group for PD people.We conduct multidisciplinary therapy sessions at our centres. We were running two centres in Kolkata but after covid we are conducting only online sessions to patients and caregivers. This organization is run by caregivers only, no outside volunteers. I am attaching the link of our documentary for your perusal please.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I and my brother are culturally inclined and my brother, who was suffering from PD abused publicly for his symptoms like Masked face, stony staring, tremors due to lack of awareness of this disease and caregivers are helpless. I felt an urge to form a support group to make people aware of the disease and give solace to the patients and caregivers and support them in isolation from the society. My mother was doctor.
Yes, we need CURE badly and need a vaccine so it can be prevented.
What type of goals do individuals with Parkinson’s have when working with you?
The goal is
- To make people aware of the disease.
- To halt the disease as long as possible
- To return the patients to the mainstream of the society with their not so able conditions.
What effect can it have on an individual with Parkinson’s?
After each session their moods are enlightened, and it boosts their energy which is most important for PD patients. They wait for the next session eagerly.
What would you like to see as a future goal for your programs?
To open more centers.
What events do you participate in?
The last event I have participated at Roundtable Leadership Forum of the Regional Parkinson’s Disease Societies at the 8th AOPMC in Kolkata, India on March 18, 2023.
How does this also assist the caregivers?
All caregivers are members of this group and actively participated in the programs.
https://youtu.be/FHDOJAeevQw?si=A3Zo6uJ3kEE0SdR2
https://youtu.be/7iT4hmne8Q0?si=9zUKxBuMT8XgvUTL
https://youtu.be/YRSMnfRHcpI?si=olM4wJxYLSGqchxP
https://youtu.be/2Sqj_9nsIf8?si=c-3RqLxIw37cntA3
https://youtu.be/e84t3fjgi3A?si=BBtTk1Jcp3j_Ru-r
How can someone get in touch? What is your website?
We don’t have a website, but they can get in touch through Facebook, phone, WhatsApp.
How can others also become advocates for awareness?
All caregivers of our organization are advocates.
In your opinion what is the key to effective advocacy?
To organize more and more awareness programs – our voice must be heard by all.
How can we better fundraise to support a cure for Parkinson’s?
Through crowd funding platform.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
1.Tai Chi
2.Movement Dance Therapy
3.Singing
4.Other activities like Theme based art works, Brain games, Quizzes, Storytelling sessions, Skits etc.
Why should people who don’t have Parkinson’s care about this?
They spare one hour weekly to spend with them to feel them still they are valuable to the society.
Have you had any family members or relatives affected by Parkinson’s disease?
Yes, my brother who died of this disease in 2022.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Be positive, cure is not far away. Campaign to find a vaccine immediately to prevent the disease in future.
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PARKINSON’S DISEASE PATIENTS WELFARE SOCIETY KOLKATA
A Non-Profit Organization
The motto of the Parkinson’s disease Patients Welfare Society Kolkata comes alive every time we meet our dear people living with Parkinson’s disease and their family and caregivers.
VISION – A society to create awareness & disseminate knowledge about Parkinson’s Disease and related disorders and providing conducive environment for the patients and their care givers through all sorts of welfare activities.
Mission– Thousands of people are suffering from Parkinson ’s disease in Eastern India. Among them most from the West Bengal itself though proper data is lacking. These patients cannot move one step without medical help which is costly. They always need a helping hand to do their daily chore but Society awareness is almost nil. They face rejection from all strata of society.There is a need for a support group for the patients as well as for their care givers which is lacking in this part of region. We are here to give them a feeling that they are not alone in their fight.
The Parkinson’s Disease Patients Welfare Society, Kolkata was formed in 2014 under the president ship of Dr. Hrishikesh Kumar, an eminent Neurologist and Vice-Chairman at Institute of Neurosciences-Kolkata (IN-K), patients, caregivers, therapists, scientific researchers, doctors with the mission to improve the quality of life of Parkinson’s disease patients and caregivers through support and treatment options.
PDPWSK is a small initiative to bring solace to the patient and care givers. We intend to provide a platform where patients with Parkinson’s disease and care-givers interact are still in initial days. I am delighted to share that Parkinson’s disease Patient Welfare Society Kolkata (PDPWSK) is shaping up so well. In the short span of two years it has made its mark and is being recognized for the impact it is making on society.
PDPWSK is also organizing weekly sessions for patients and caregivers. We endeavor to provide variety and the weekly program includes physiotherapy session, dance movement therapy session, musical performances, quiz sessions, bakery classes etc. The idea of these types of program was to gather patients and caregivers under a same roof to interact with each other, to share and gather views from others which might relieve the stress or burden. By introducing dance or exercise program PDPWSK wanted to mobilize the patient movements in a more recreational form and to remove the psychological and physical obstacles.
A Note from the Founder President of PDPWS KOLKATA-
Dr. Hrishikesh Kumar
Parkinson’s disease patients face isolation from the society in general and the family of patients in particular. Unfortunately, there is no perceptible awareness about the disease was especially in Eastern part of India. Despite their importance, patient support societies and fora are still not a common practice in this part of world.
PDPWSK is a small initiative to bring solace to the patient and care givers. We intend to provide a platform where patients with Parkinson’s disease and care-givers interact are still in initial days. I am delighted to share that Parkinson’s disease Patient Welfare Society Kolkata (PDPWSK) is shaping up so well. In the short span of two years it has made its mark and is being recognized for the impact it is making on society.
PDPWSK has already organized six major awareness programs during 2015-16. It is also organizing weekly sessions for patients and caregivers. We endeavor to provide variety and the weekly program includes physiotherapy session, dance session, musical performances, quiz sessions, bakery classes etc. The idea of these types of programs was to gather patients and caregivers under a same roof to interact with each other, to share and gather views from others which might relieve the stress or burden. By introducing dance or exercise program PDPWSK wanted to mobilize the patient movements in a more recreational form and to remove the psychological and physical obstacles.
I can see that the society has become almost a family for the patients and they look forward to meet each other. According to one patient “We are actually waiting whole week for Sunday to come to present at this classes”. PDPWSK is also encouraging patients to show their inner talent. Already 10 of them made a singing troop and performed in two functions and their performance was highly appreciated.
Being the President of this organization I am quite happy that we are able to bring smile to patients and their family. I look forward to see the society grow further and become more vibrant in years to come.
What impact do we generate as support system –
- Community based rehabilitation -It is a multi-disciplinary approach which compromises Physiotherapy, Occupational Therapy, Speech Therapy,
Psychology and Cognition, Diet and Nutrition and alternate therapies such as music, dance and arts, brain games are the facilities provided in our centers on weekly basis.
- Awareness and Sensitization of the Masses through various events
- Seminars and Workshops on regular basis to disseminate latest developments & research in the field of PD
- Home outreach Program provides strategies to cope with the disease for home-bound patients.
HOW YOU CAN HELP
BECOME A FRIEND OF PWP –By volunteering your time for the cause of Parkinson’s and the activities of our society.
BECOME A SPONSOR – Help the society grow by generous donation and support.
REACH US
- 9830821124/9875534379
- pdwskolkata@gmail.com , pdpwsksecretary@gmail.com
- FaceBook-PARKINSON’S DISEASE PATIENTS WELFARE SOCIETY KOLKATA.
OUR ACHIEVEMENTS:
- Conducted 06 awareness programs within such a short span of time.
- Fun games, quiz, videos, bakery workshop were conducted that instilled a lot of enthusiasm amongst the patients and caregivers.
- Sessions on Tai-Chi by Sensei Tania Hui and dance by Ms.Alokananda Roy were well attended by the patients and their care givers.
Our doctors and others members participated in Tsk25 Marathon on 20th December for the cause of PD.Our President Dr.Hrishikesh Kumar, who is a Marathon runner of International repute, ran 25 KM for his patients.
- Opened our first centre in South Kolkata on demand of patients where different therapies were conducted on weekly basis . Patients are eagerly looking forward for this group therapy.
- Planning to open another 2 centers this year.
- We have created our Face Book in the name of “ PARKINSON’S DISEASE PATIENTS WELFARE SOCIETY KOLKATA”.
- Planning to open our website this year.