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Stories of Parkinsons # 9 Shobhana Tai

It is said that Parkinsons is the disease of the elderly. Agreed that the numbers of the elderly suffering from this is high. But while working with the Parkinson’s Mitra Mandal , I came across many young people suffering from the same. The picture on Google in reference to Parkinsons shows an elderly person.  Mr. Chad Walker, a regular person whose wife developed Parkinsons in her 30’s has undertaken a mission to get Google to change the picture. As seeing the picture creates the misconception that only the elderly get Parkinson’s.  Whereas in reality the number of Parkinson’s cases in the young are increasing significantly. 


While working with Parkinson’s Mitra Mandal, the youngest person suffering from Parkinson’s,that I have come across is the twelve year old Manjula Zagde. I met when I went to Anandvan. At Anandvan, everyone leads a near normal life, be it a person suffering from leprosy, physical disablitlies or blindness. The person who goes there is infected with happiness. Manjula works in the tailoring department. She is in her 30’s now. One cannot feel that she is suffering from Parkinson’s since so many years. She is living a good life. She does not have much knowledge about her ailment.


Later I began coming across many such cases. One of them being Amita Gogate. She was diagnosed with Parkinson’s in her early thirties. We met her when we going on home visits to meet people suffering from Parkinson’s.  She does not come to the Mitra Mandal, actually there is no need for her to do so.  Her family consisting of her parents, her in laws, her husband have been instrumental in her making peace with her ailment. When we first met her, her son was only a year old, now her children have grown up and are employed in very good organizations.  Her children also take good care of her. Despite being a housewife she is leading a very good life due to these reasons.  She had undergone a surgery called thalamotomy.  This surgery used to be done earlier, now it is obsolete.  I have visited her several times. 


Mr. Sudhir Vakil, is from Nagpur. His son his based in Pune, he attends the meetings whenever he is in town. He also developed Parkinson’s at a young age. It is almost forty years since he has been suffering from Parkinson’s.  He could manage to successfully work in the bank, where he was employed. He had also undergone the abovementioned thalamotomy, as well as the DBS surgery about eleven to twelve years earlier.  He took an early voluntary retirement from the job like any other employee of the bank usually do.  His early voluntary retirement has no connection to his suffering from Parkinson’s.


Mr. B.K.Chougale , a member of our Mitra Mandal began his career as a school teacher and retired as Group Education Officer, despite suffering from Parkinson’s since an early age.  Once he was promoted and transferred to Sangli. Many a times people refuse a higher position just to avoid a transfer even though there is no illness. Mr. Chougale, not only accepted the transfer but also did such wonderful work that he was awarded by his organization despite suffering from Parkinson’s.  He retired after successfully completing his tenure.


Our dear member Rekha Acharya is also such a person.  She was forty seven when she was diagnosed with suffering from Parkinson’s.  She was instrumental in setting up Kindergartens in both Marathi and English medium at MIT. She too retired in 2005, after completing her tenure. 


When we look at these people we can understand their condition.  It is not that they are carrying out their duties without any difficulties.  But if the mind is determined, it can be overcome.  Another big example is of Mr. Umesh Salgar. He is employed with New India Assurance, his job involves a lot of travelling. He has to visit many two tier and three tier cities for auditing purposes.  While in those cities for his official work he also manages to run some errands for Parkinson’s Mitra Mandal.  In between, he had visit Jameshedpur for some official work, many of his colleagues refused to go but Mr. Salagar went there are completed the work. He also participates in many Essay Competitions. In short, he has not let Parkinson’s hold him back.


Another person who comes to my mind is Mr. Vaasu. His father also suffered from Parkinson’s before him and Mr. Vaasu  was also diagnosed with Parkinson’s at a very young age.  He runs a very big business. He has undergone DBS surgery as he was suffering from a lot of involuntary movements. These stopped after the surgery. When I visited him at his residence he showed us before and after surgery videos. At present, he is managing his businesses very well. 


Many more such examples can be given. So the people who get Parkinson’s at a young age should not lose heart. Many a times, it is very difficult to accept the disease after being diagnosed at such a young age and because of this lack of acceptance, Parkinson’s continues to progress.  The examples given here are just to remind you that once you decide that you can do the job or business perfectly, there is no stopping you.  Many times, the people around you support and help you but there is no need to take care of it all the time. You can manage on your own.


Mr. Arvind Velurkar, had to travel to Talegaon for his job. He lived in Aundh. His house was on the third floor. He had to take a bus to the railway station to catch the train to reach his work place. He successfully completed his tenure. He too suffered from Parkinson’s from the young age of thirty five or thirty six.


How many more examples should I share?  There are innumerable instances. Those who have been diagnosed with suffering from Parkinson’s at a very young age, keep these examples in mind, don’t lose hope. Make your mind stronger and face the situation effectively, is my request to you.

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