Shobhna Tai
Mr. Ashok Patil takes a lot of interest in our Parkinson’s Mitra Mandal. He has been reading and commenting on the blog about Parkinson’s. Hence, responding to his comments through the chat itself makes better sense. This way the responses reach a larger audience.
One of his concern was about the fear of Parkinson’s. During his walks, he meets a person suffering from Parkinson’s, who is accompanied by a care taker. The patient is fairly regular in his walks and the caretaker takes good care of him. The patient does not look scared. In reference to that I would like to inform him that no two cases are the same. The experiences that I share through my blogs are meant to be comprehensive. Every patient reacts differently to the disease, ranging from non-acceptance to “to hell with Parkinson’s”. Therefore, my interpretation will be based on the experiences that most people share in the society. I am glad that awareness is increasing in the society.
Mr. Patil, mentioned about another incident in reference to two Parkinson’s patients who were attending a wedding. The host was requesting them to come on stage and get a picture clicked with the family. They were reluctant to go on stage. So, Mr. Patil along with a friend, appealed to the host not to force the Parkinson’s patients to come on stage. The patients thanked Mr. Patil for coming to their rescue.
I beg to differ in this. Making the patients feel ashamed to go on stage is fundamentally wrong and the seeds of fear are unwittingly planted. In our case, when we go to attend a reception we both make it a point to go up to the podium, wish them well and if they insist we get the pictures clicked with the family. Now, because of Mr. Tirthali’s bent back he appears shorter by about Two and a half inches, but it hardly makes a difference to the hosts. Infact, they respect him more, when they see him smiling and enjoying himself.
To give another example. During Anita Awachat Sangharsh award ceremony, both the awardees Mr. Madhusudan Shende and Mr. Anil Kulkarni were on the stage. They were being interviewed by Dr. Anand Nadkarni. I was also present. These two had a very positive influence on people. Their poignant body language, the poise with which they sat, with the confidence with which they answered were overwhelming.
So there is no need to feel embarrassed. At our Mitra Mandal’s gathering held on the 11th of April, we request the patients to pray on the stage. Some recite the prayer sitting, some stand, some keep moving. We don’t worry about such issues as long as they recite the prayer, this creates a positive effect on the audience. Those who are disabled are overwhelmed and feel that we should learn this quality from these patients. Even during the dance performance you will find that all patients differ. Some may tremble, others may have some involuntary movements but they are least concerned. Their main motive is to dance well and give a good performance.
It is not necessary for a Parkinson’s patient to have any problem in connecting with the society. I think it is important that they behave like other common people. When you come in contact with the support group you will find a big boost in the confidence of the patients. To live happily with Parkinson’s is our main motive and all our activities are focused on attaining this. This is very helpful as they do not suffer from any mental illnesses due to this. In my next blog I will elaborate on this.