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Stories of Parkinson's #6 Shobhana Tai

Updated: Apr 8



Befriend Parkinson! Stay happy!  This sound so easy but is so difficult to follow on. Especially, if one is affected by it at a very young age.  Remember, it may be difficult but it is not impossible. Let us try to understand, why is it difficult? Once, one is affected with Parkinson, one begins to suffer from tremors in the extremities and stiffness in the body making movement slow and labored. This makes regular everyday working difficult. Simple acts like tying shoe laces or buttoning the shirt, writing become a difficult task. Sometimes signing your name also is tough. Women find simple cooking acts becoming tougher.  Speaking becomes a little difficult. This creates a limitation in everyday work making the patient frustrated. The patient does not want to step out of the house and meet people. 

 

Another point to be noted in this is that once one is diagnosed with Parkinson, confidence goes for a toss. Depression and anxiety are just round the corner. These mental illnesses are waiting to engulf the patient at the first sign of weakness. There are medicines available to manage the movement but managing depression and anxiety becomes very tough. At such times the patient as well as the care taker need to be vigilant and avoid this. This is a very difficult balancing act, on one side the care taker needs to shield the patient’s emotional problems and on the other side  the patient needs to be made self-reliant. 

 

This brings us to the need of self-help groups. They are very helpful both for the patient as well as the care taker. The thought that, “There are many like me. I am not alone in this” feels very comforting. You come across many like-minded people, who can understand you, who can empathize with you. You find a shoulder to cry on, you can share your thoughts, problems and many such things with these people. The confidence of the patient increases once they join such self-help groups.  These self-help groups organize talks with specialists, lectures helping in dispelling many myths. Once ignorance is taken care of, depression and anxiety can be managed.

 

We experienced the same when we were introduced to the Parkinson’s Mitra Mandal.  It helped us in befriending the disease and also made us enthusiastic in the thought that we could bring about a change in the life of others who connect. There are many instances like ours.  Shri Kamble, a trade unionist, who was well known for his fiery speeches was unable to speak, due to Parkinson. Once in our meeting he in his booming voice recited the courageous deeds of the brave Maratha soldiers (Pawada).  Colonel More, a decorated soldier of the war against Pakistan refused to move out of the house after being diagnosed with Parkinson. But, according to his wife, after coming in contact with the Mitra Mandal, he was very excited to come for meetings, lectures and outings. In fact, he would be ready an hour earlier to attend these events. Shri Sidhaya, was diagnosed with suffering from Parkinson at an early age.  The first time he came to attend the meeting he was bawling while introducing himself. Later the same Shri Sidhaya, shared his experiences on the stage of the Mitra Mandal. He travelled abroad, wrote many articles in our magazine. He was very keen on watching a cricket match live, he fulfilled this dream when he attended the match held at Balewadi in Pune. He shared these experiences by writing articles in not only the Mandals magazine but also the magazine printed by the Senior Citizens club. There are many such experiences that can be shared.

 

The world has come closer due to social media. Thus connecting the self-help groups from all over the world. Making the motto, ‘Together, we move better’ more meaningful.  Jorden Webb, was diagnosed with suffering from Parkinson at the young age of Seventeen. He used part of his studies to benefit people suffering from Parkinson and completed his BSc in Psychology in the same. He has been awarded the Lynn Young Prize in Psychology for overcoming challenging circumstances.  Such examples make the patient feel connected and instil a positive attitude in them. We can make a chain of people helping one another and making the journey easier.  Befriend your enemy and remember actions speak louder than words. Join in this endeavor and effortlessly slide into becoming a support to those you connect with. I feel this makes the effort worthwhile.

 

 

 

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