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Parkinson's Stories #77 - by Shobhna Tai Tirthali

Updated: Jan 26

(हिंदी में पढ़े) (मराठी भाषेत वाचा) It has been 23-24 years since he retired. Yet, many people who have worked with him and have love and respect for him, some to visit. His health is not as good as before. Weight has reduced substantially, has difficulty speaking, is bent from the waist, and has to be held when getting off a chair - seeing all this, those who have arrived feel bad at first. Then, Saaheb is joyful, is able to recognise them, is happy to see them - seeing all this - they feel happy too. We are not habituated to such frequent occurrences. An age of 81 and PD affected for 23 years, with this his condition is pretty good - that is what I keep saying. But I do realise how difficult it is to be dependent for small things - especially for a person having so much energy, enthusiasm and courage.

While visiting homes, we have seen many Parkinson’s affected people who have not accepted their situation. My handwriting was so good - now it is is not, I have done some many treks, so I cannot climb a staircase, I used to lift so much weight, now I cannot lift a single bag, I could cook a meal for fifty people, now I cannot make a cup of tea for myself. Their life has stagnated while having such sad thoughts. This also contributes to Parkinson’s worsening its symptoms fast.

But Mr Tirthali’s case was not such. Accepting Parkinson’s well, he did not bow to the dependency it brings on. He was also not sad. Within his mind, he was yet full of pride. After diagnosis, initially we made some mistakes. We believed in people who said that Parkinson’s can be cured. After meeting Madhusudhan Shende and Sharatchandra Patwardhan and getting associated with Parkinson’s Mitramandal, he became friends with Parkinson’s and never looked back. It is now a friendship of 23 years.

Once you accept Parkinson’s, it is easier to understand it. Its easier to befriend it and also easier to live happily with it. I repeatedly say that this acceptance is important and have given many examples of those who live this positive way. For those who have Parkinson's as a new guest, this will be surely helpful. This acceptance is required to be done only once. PD slowly takes out an arrow at a time from its quiver. As a result new conditions occur, which need to be newly accepted as they happen.

If I were to give an example of this, initially only tremor and slow movements occur. At that time, he could drive a car, travel alone. Later, speech was affected. Writing was fine. Slowly, his handwriting went bad. Four wheeler driving stopped. But, he could go alone by auto. Did not require anyone while walking. After PD diagnosis, for nineteen years, he would go to near by park for exercise. Then, his back got bent. Covid made health even worse. Had to start keeping a caretaker from a bureau. He came out of that too quite well. His medicine intake also did not go up too much. At each stage, the acceptance does not happen in a moment. Shubhankar and Shubharthi both have to try for that. Consistently, one has to do exercise, praanayam, meditation, chand (marathi songs), family connect, meeting with self-help group also helps a lot.

One more thing, a lot of people consider him as a ‘role model’. If I do not remain happy, it will affect others, he has that too playing in his mind. He wants to keep that image of himself alive. You can also be a ‘role model’. Ok then, let us walk the good path with each other’s co-operation.

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