Volunteer With Friends Of Parkinson’s & Share The Love

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Friends of Parkinson’s, an initiative by the Parkinson’s Disease and Movement Disorder Society, provides an opportunity to all, including senior citizens, to come forward and make a difference in the lives of People with Parkinson’s.

Research over the past few decades has consistently shown the positive impact of friendship on levels of happiness, general, and psychological well-being in older adults. Especially among the elderly, friendships serve as a protective factor against depression and loneliness. It’s where programs like The Friends of Parkinson’s (FOP) help. FOP is an initiative by the Parkinson’s Disease and Movement Disorder Society (PDMDS), Mumbai, providing an opportunity for the community to come forward and make a difference in the lives of People with Parkinson’s (PwP, is how we refer to them) and their families.

Parkinson’s is a chronic, progressive, neuro-degenerative illness caused due to a chemical imbalance in the brain. In India, more than 2 million people have been diagnosed with Parkinson’s and this number is rapidly rising.

A diagnosis of Parkinson’s can be life changing; not only for the person diagnosed with Parkinson’s but also for their families. People with Parkinson’s suffer from an array of symptoms, the collective effect of which is an inability to perform even essential daily activities like eating, bathing, dressing, walking or even sitting down and getting up from a chair. Their ability to speak usually gets affected, limiting their ability to communicate with others. They may also suffer from cognitive and mood impairments like memory loss, depression, hallucinations, delusions and anxiety. All this greatly affects their quality of life and that of their families. Medications are available to control some of these symptoms but unfortunately there is still no cure for Parkinson’s.

The Friends of Parkinson’s is a versatile program involving people of all ages from the youth to the elderly. Volunteers in this program help raise awareness about Parkinson’s in the community, they assist PwP during the group therapy programs and they spend time with PwP who are home bound. Volunteers who are older are welcome and FOP has already had some of them. We spoke to them about their experience of volunteering for this initiative.

Mrs Talwar is one of the volunteers

“My husband who recently passed away had Parkinson’s. Being among people with Parkinson’s has given me so much comfort. It takes me away from all the pain,” said Mrs Talwar, a senior who volunteered with FOP. “I especially felt empathy towards the partners of PwP. I knew I had to help them understand their spouse better so that they would have no regrets later. Today I feel happy and satisfied that I’m giving back in my own small way.”

For many it is the joy of giving back.

“I first saw people with Parkinson’s performing at an event and I was taken aback with

Mr Louis, a senior who volunteers

their positivity in spite of their difficulties. I knew I needed to help them in some way. I started volunteering at the groups three years ago and I enjoy myself. Every week they wait for me to come and it gives me so much joy to see them improving,” said Mr Louis, another senior volunteer. Mrs Biyani, another 50+ volunteer has even started a Parkinson’s group in Vapi, Gujarat, where she lives, after attending the sessions at PDMDS.

Mrs Biyani even started a group in Gujarat

“The very first Parkinson’s group session I attended gave me deep satisfaction. More than any volunteering work I’ve done earlier, helping people with Parkinson’s, knowing each member by name and face, gives the satisfaction of serving a family that is close to my heart. I look forward to my weekly sessions and with the help of PDMDS my family has even started a Parkinson’s group in Vapi, Gujarat. Service to others gives me great happiness.”

These people are just everyday people like you and me who have realised the value of empathy, understanding, patience, love and just being present. Their work has been appreciated both by the PDMDS team as well as all the patient members. But perhaps their greatest appreciation has come from people with Parkinson’s who are homebound. For most of them, these volunteers are their only social interaction and their visits are the highlight of their week. Caregivers also appreciate the respite they get for a few hours every week from these visits and the support they receive from a person who understands what they’re going through. These are people truly making a difference in the lives of those with Parkinson’s. I would like to end with a beautiful quote which says:

“The smallest act of kindness is worth more than the grandest intention.”- Oscar Wilde

If you are a senior citizen with time to spare, come spend time with a person with Parkinson’s. At PDMDS, we firmly believe in our motto ‘Together we Move Better’. If you would like to be Friends of Parkinson’s do call us on 022-66106249/+91 9987216057 or you could email us at contactus@parkinsonssocietyindia.com

For related articles on Parkinson’s Disease & support groups available, click here: Parkinson’s Support & Caregiving Resources

To ask Dr Nicole D’Souza a Parkinson’s related question, click here: Ask An Expert

About Author

Dr Nicole DSouza

Dr Nicole D’souza, MPT (Neurology), MIAP, is a Neurophysiotherapist and Head of Therapy and Research at the Parkinson’s Disease and Movement Disorder Society, Mumbai. She's also an expert listed on our website.