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The Basal Ganglia Support Group: A godsend for Parkinson’s patients

What is the Basal Ganglia Group

Founded by veteran Parkinson’s Disease (PD) crusader Radhamani R. Bindganavale and the Founder of Brains, Dr N K Venkataramana, the Basal Ganglia Group works zealously with a large number of PD patients and their caregivers. With regular meetings, counselling and other forms of active intervention the group helps them with information, knowledge, treatment and social support free of cost, enhancing their quality of life. An important aspect of its humane work is its engagement with caregivers: it equips them with the know-how and information they need to cope with the daily challenge of ‘managing’ Parkinson’s patients, many of them requiring intensive attention.

The moving spirit

For both Radhamani, whose husband succumbed to Parkinson’s after a long, gritty battle with the disease, and Dr Venkataramana, the Group has always been far more than a social responsibility. The doctor who founded Brains in Bangalore and is its Chief Neurosurgeon has worked with relentless passion on transformational social projects, including Golden Hour, an initiative that saves the lives of hundreds of trauma and critically ill patients in Bangalore by ensuring speedy and appropriate response to medical emergencies. Together with Radhamani the doctor works tirelessly to bring comfort to Parkinson’s patients through the group and its extensions like the exclusive Parkinson’s clinic at the Brains Hospital.

Regular activities

Monthly meetings that help patients and their caregivers interact and share their experiences, leading to enhanced care.
Featured in these meetings are sessions by neurosurgeons, neurologists, dieticians and experts in Yoga, dance and other forms of physical exercise that are known to help the mobility and quality of life of patients.
On an average 70 patients and their caregivers attend each of these meetings of the Group, which now has hundreds of members.

Real life story of the Group Founder

I had no idea what Parkinson Disease was until my husband was stricken by the disease in 1996. It took several experts in India nearly a year to make the diagnosis. After reaching out to others with similar symptoms and diagnosis, my husband and I got together and started a non-profit organization in Bangalore called the Parkinson Disease Society of Karnataka.

Initially, for the first two years of treatment, my husband responded well to the medication and at times felt ten years younger. However, over the next two years, his system stopped responding to even larger dosages of the medication; soon, he could barely communicate, move or even eat by himself. However, his mind was alert as always and he diligently captured his daily activities and events in a diary that give a glimpse of the extent of depression PD patients typically go through.

In May 2000, my husband passed away after battling the disease for nearly five years. He was particular that his brain be donated to research after death, as the medical awareness about Parkinson Disease was so preliminary in India at that time. We, therefore, donated his brain at the Brain Bank in the National Institute of Mental Health for Neuro Sciences (NIMHANS) at Bangalore, India. His brain is being used to this day in research studies.

Upon his death I moved to the US to live with my children and brothers. During the first year of my stay, I toured 16 cities around the country, addressing people at social gatherings, creating awareness and mobilizing help for Parkinson patients and their families in India who desperately needed free medication. Our grass-root fund raising activities generated enough help to support 13 economically deserving patients with free monthly medication for life. The American Kannada Koota association meanwhile gave me an opportunity to speak at the World Kannada Conference in Detroit, enabling me to interact and talk to people about the disease. In 2001, I worked as a volunteer at the Emerson Hospital in Boston for a year, counselling patients and families about Parkinson Disease.

I returned to India in 2007 and started a Parkinson Disease Support Group in Bangalore as a support forum for PD patients and families to not only interact with each other but also participate in specialized therapy sessions and medical discussions. The support group has risen to a total enrolment of over 140 patients in the last three years. The PD Support Group has recently joined forces with the Brains Hospital to form a non-profit support organization called “Basal Ganglia Support Group”.

The support group meets regularly every month. We have specialized yoga, physical and speech therapy sessions in each meeting. We also invite an occupational therapist, psychiatrist and neurologist/neurosurgeon to some of these sessions to help facilitate discussions around research, medication and treatments. All these programmes have benefited PD patients and their families/care givers. An average of 70 patients with caregivers attends the meeting every month.

The Basal Ganglia Support Group at Brains also organizes a free camp on the World Parkinson Disease Day (April 11) every year at the hospital, which is attended by more than 100 PD patients. We arrange for all the logistics including the transportation of the PD patients from and to their homes on hospital buses and lunch and snacks for the patients and their caregivers. The agenda on this day includes two sessions from medical experts, free consultation for PD patients, and interaction with patients and caregivers.

How to help?

If you wish to reach the group or support it in any way, do connect with us. Here is the contact information: