Parkinson Mitra Mandal is a self-help group jointly run by Shubhankars (caregivers ) and Shubharthis (patients). It was started by the stalwarts Sharachchandra Patwardhan and Madhusudan Shende. Sharachchandra Patwardhan’s wife had Parkinson’s disease and Madhusudan Shende himself was a Parkinson’s patient. These two civil engineers were working on the same construction project a few decades back. And then PD brought them together after a gap of four decades in Pune. Both understood the necessity of spreading awareness about this disease to Parkinson’s sufferers by providing information and exchanging experiences. As days passed more and more patients started getting together informally and that is how this self help group, Parkinson’s Mitramandal Was formed in Pune.
The feeling of conveying information to the sufferers, to exchange informations and experiences for each other’s happiness intensified and self-help group grew many folds further .
People with common problems come together informally in self-help groups. With some Efforts, they are made to accept and solve problems through various activities. For many members, the journey to friendship with PD became much easier after joining Parkinson’s Mitra mandal. “Seek help and offer help to live happily with PD”, is the motto of our group. Some volunteers came forward to take it as a mission to help other patients and the caregivers. With such involvement one gets satisfaction and at the same time forgets the sufferings.
In our self help group we do organise formal, informal meetings with various experts from various fields ( Medico and non medicos) which brings a lot of relief to the ailing patients.
We do not take any membership fees. The organization is purely run with the help of voluntary donations. We do pay home visits which boosts the
morale of the newcomers and also of those patients who love people coming to their homes. The visits sometimes work more than the medicines.
The patients, at various stages of Parkinson’s, fight courageously with the disease for even 20/25 years . The home visits help to regain their self confidence. The patients, too visit the other patients . Seeing the 20/25 years sufferer (visitor), the host patient feels happy and confident. The feeling of ‘why me?’ disappears and the hope of being well increases .
Lectures by various experts, Marathi books and other publications provide real knowledge about disease and treatment, remove misconceptions, find solutions to overcome various symptoms by sharing each other’s experiences. Arts, sports, trips create a sense of cooperation, positive attitude.
Speech therapy, physiotherapy, treadmill, yoga, pranayama, music therapy , dance therapy, drum therapy such experiments are also being done. On the basis of all this lead the despondent Shubhankar and Shubharthis to
realise that PD is not the end of life and they do get a new ray of hope and inspiration to live.
Objectives of our self help group-
1. To spread information about the work of Parkinson’s Mitra mandal to people with Parkinson’s.
2. Parkinson’s Literacy – Through the use of written materials, media, expert lectures, websites, YouTube, Zoom meetings, Face book, What’s app etc.
3. Supporting patients and caregivers to fight with Parkinson’s, for Parkinson’s acceptance.
4. To provide a platform for exchange of experiences.
5. Helping build confidence to create a positive attitude.
6. Trying to increase the physical, mental and social functioning of the beneficiary to improve the quality of life.
Fulfillment
1. Use of newspapers, magazines, Radio etc. to convey information.
2. There are about 360 members ( Shubharthis) in our Mitramandal . Of them 280 are from Pune and 80 out of Pune. This number varies from time to time.
3. Lectures by various experts for Parkinson’s Literacy, 3 books in Marathi are made available, 13 souvenirs are published so far. Besides phones and websites, YouTube, Zoom meeting, Face book, What’s app are in use.
3. We help the patients and caregivers to live a positive and better quality of life through trips, meetings, phone calls and home visits.
Future plans
1. Preparing volunteers for home visits.
2. Helping to form self help groups in other areas.
3. Conducting meetings in small groups at a place convenient for the beneficiaries.
4. Pursuing research by experts from various disciplines regarding the use of Ayurveda, Homeopathy, Unani, Flower remedy, Music and dance etc. as a supplement to other treatment methods.
5. Creating a Specialised Nurses Bureau.
6. Examining outstation patients at a low rate by taking camps twice a year.
7. Spreading awareness of Parkinson’s disease in other areas.
