An interview with Shanthipriya Siva Metamorphosis, a Journey on October 31, 2023 by George Ackerman, Ph.D, J.D.
Please tell me a little about your background.
I am a consultant ophthalmologist, abstract artist, writer, YOPD warrior since 2011
Can you tell me more about your organization?
When i was diagnosed in 2011 Everywhere I looked, there was a dearth of support and resources. More importantly, there seemed to be a taboo around talking about it. After periods of denial, I slowly started accepting the fact I have to live with an incurable disease. I founded Saarfoundation in April 2019 to make a difference in the lives of people with Parkinson’s.
SAAR is an acronym for the four pillars upon which all SAAR’s activities will be based:
Support: Create a support ecosystem for people with neurological diseases
Awareness: Conduct awareness programs for patients and caregivers
Action: Influence actions and rally support to achieve SAAR’s objectives
Rehabilitation: Build a state-of-the-art neurological rehabilitation center.
At SAAR, our mission is to make a difference to the lives of patients with Parkinson’s and other neurological diseases. We aim to do this through many fronts: Support, Awareness, Action and Rehabilitation.
There are many challenges faced by patients of Parkinson’s Disease (PD) and other Neurological Diseases (ND): late diagnosis, social stigma, lack of education / awareness among patients / caregivers, lack of holistic approaches to managing PD and ND, lack of medical access among poor patients, and lack of support groups.
It is in this context that we started SAAR Foundation with the mission of making a difference to the lives of PD and ND patients by addressing these challenges.
For more information please see http://saar-foundation.org/about/
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
Passion is to spread awareness and hopefully a cure for Parkinson’s.
What type of goals do individuals with Parkinson’s have when working with you?
It’s a support group where we help each other. We work together to live well, share tips.
What effect can it have on an individual with Parkinson’s?
You can live well with Parkinson’s.
What would you like to see as a future goal for your programs?
My future plan is to start a rehabilitation center for neurological disorders.
What events do you participate in?
I give talks on how to live well with Parkinson’s.
Disability activities in India
Medical support to poor
World Parkinson’s Congress.
How can someone get in touch? What is your website?
How can others also become advocates for awareness?
By sharing your story
By participating in research
In your opinion what is the most effective method for advocacy?
Understanding people’s needs and wishes.
Help to cope.
Engage with community.
How can we better fundraise to support a cure for Parkinson’s?
By creating more awareness
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I start my day with positive affirmations, pranayama, and meditation.
Working out in gym
Zumba-helps in coordination
Why should people who don’t have Parkinson’s care about this?
Only if they are aware stigma can be removed.
Have you had any family members or relatives affected by Parkinson’s disease?
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Shake off and move on