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Stories of Parkinson's #7 Shobhna Tai

Updated: Apr 8



(हिंदी में पढ़े) (मराठीत वाचा) “I am telling you that she is acting. Just two days back I saw her walking briskly in the market and today when I went to meet her at home, she refused to get up from her chair. You work with Parkinson patients and she is suffering with Parkinson’s , that is why I am sharing this with you. I tell you that there is something funny about this woman.” This kind of a reaction from the neighbor was not unjustified but the patient was also not to be blamed.

 

Some patients of Parkinson’s suffer from the Off-On period. Though not all patients have the same symptoms. When the patient has taken the medicine and it is effective that is the On period, the movement of the patient is smooth but when the effects of the medicine wear off the patient has difficulty in getting up and other such movements. They are unable to perform simple tasks during the off period.  In between, when they take the medicine again, the movement becomes smooth.

 

Why do I very confidently say the neighbor is not be blamed?  Well, I, myself was such a person a few years ago. I, too, misunderstood a patient.  We were not very familiar with the symptoms of Parkinson’s. My husband,  a Parkinson patient did not have the Off-On period. Once, we visited Shri Keshav Mahajan, at his house. His wife, Anjali, was a working woman. She messaged us saying that she will join us soon after taking half a day off from school, where she taught. Till then we could chat with her husband. The door was opened by Anjali’s elderly mother in law. We entered the house and waited for Mr. Mahajan.  Ten minutes passed by, then fifteen minutes, Mr. Mahajan had not yet come out of his room. We were very disturbed at this.  We ran out of topics to talk about, with the elderly, hard of hearing old lady. In the meanwhile, Mr.Mahajan came out and we began to chatting. A little later Anjali also joined us. This is when we became aware of the Off-On period.  Until then, we were under the impression that, “Oh, we have been here for so long and this man is not ready to come out!”

 

At present, however, we have close relations with Keshavrao and Anjali. When we go to Belgaum, they always ask us to bring the kunda . When they make pao bhaji at their residence, they invite Kaka-Kaku that is us to their house. I feel that if we were aware of Keshavrao’s Off-On period we could have assisted him when we went to meet him the first time. It could have helped in avoiding the misunderstanding.

 

These home visits have helped us understand different symptoms of different patients.  What happens is that even if someone close to you is suffering from Parkinson’s, you are unaware of all the symptoms.. Our dear friend, Parkinson, still has some secrets which we are not aware of.  It is advisable to meet people suffering from Parkinson and discuss your difficulties and symptoms. In my previous blog I had told you about, “Together, We Move Better” this thought has brought the support groups all over the world together.

 

A patient suffering from Parkinson needs the support of his family, neighbors, close ones, and colleagues (in case the symptoms began at an early age).  It is crucial that the patient makes them aware of the diagnosis and also gives them information about the disease. To inform everyone you connect with that you suffer from Parkinson is very important.  A few patients of Parkinson’s, are hesitant to disclose their ailment.  Kindly avoid this. I will explain the reason behind this in my later blogs.  Firstly this shows that you have not yet accepted your diagnosis and secondly a misunderstanding can create a rift in your relationship. 

 

In short, this symptom of Off-On period is quite annoying and also misleading. This brings me to an incident that happened at our event of 11th April. One of our attendees wanted to use the washroom, while his caretaker was taking him there, the patient was having difficulty in moving ahead, putting a foot forward was laborious. It took him a very long time to reach the washroom. But, he had taken the medicine before getting up, so while returning he could walk comfortably and briskly. Around 250-300 attendees witnessed this. One has to see it to believe it.  In my opinion, the patient needs to make the people around them aware of this.  Given the idea that it helps a lot in making your daily life easy, comfortable and happy. Sometimes, even the family members are unaware of such things, it is for your own good to make them aware.

 

 

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