The Determined Pathfinder

Before this definitely, I’ll be disabled I did not think.

And disability for us, generally means two – one is deaf, people who can’t hear and another is blind, people who cannot see, and because of these two, sometimes the people cannot speak.

So, other than this, I did not think of any disability before, before my Parkinson’s.

I think a lot of care, personal care in the sense that I was very positive and most important was acceptance of the disease because initially when you, when I started looking on the net what exactly this disease is, I, I felt very, very bad in the sense that, it wrote so many things that I could not take it.

So, I just left because one of the people advised that it doesn’t…if you read anything on the net, it, it is not…it has a hole, it is not a w-h-o-l-e, it has a hole, so loophole, so avoid reading it and then a lot of reading was done by my husband.

I would credit a lot to my husband because he read everything and read all the research and did all the research for me also to prepare me for my DBS, Deep Brain surgery that I have undergone.

Initially, I think I had a little problem in writing, my writing lost its flair and it became very, very small, mosquito-like writing and, and I had a kind of a numbing pain here in the hand, I don’t know what it was, but it was diagnosed as Task dystonia initially and now the doctors have proved that even my frozen shoulder is one of the starting point of the disease and also, Parkinson’s…I started having my medicine from 2012, but frozen shoulder I had around 2010, so, and frozen shoulder also I managed to do because I am very determined to be keeping fit, I have always been fit and fine and then when I had this Parkinson’s, everybody said to uhh take up yoga, so otherwise I was doing physical exercise, so I started up with yoga and seven years of yoga kept me afloat.

3:08 – Is there a particular experience from your journey with Parkinson’s that you would like to share?

Covid period was a very tiring, I mean, cumbersome period in the sense that we could not, I was generally taking under the doctors of NIMHANS, Bangalore, and Covid period nobody could go because the OPD was closed and my, I, Covid period a lot of care was taken by my husband because I was working, I was heading a school and I had to go to the school, so every time he will say, ‘have you washed your hand?’ and, ‘have you…are you, when you are going, are you wearing your mask?’, he gave me a headgear, all things possible.

So in the last, I was struck with Omicron, in the third stage, I was struck with Omicron and that was, that sometimes, I think it worsened my case and a lot of movement I started having, my head will not be stable and I would not be able to sleep, I would not be reaching the washroom for my, for my needs, so all this started happening and more so it was like freezing problem started.

In Parkinson’s is, when you want to move and you cannot, your legs do not hear your command and do not take it.

So one day, I was hearing some, some guru or I don’t remember, one video to keep myself positive, so it said that if you are not well, it is your responsibility to be well and nobody else’s.

So it struck to me that yes, I have to take care of myself and I had a program in the school, I think it was Foundation Day, fifth Foundation Day, I finished that up and I went to see, I had seen on the mobile that the doctor that I was seeing, Pettarusp Wadia, was available for online consultation also.

So, this was something I was looking for because COVID, we do not know when it will end, so I went to see Dr. Pettarusp Wadia in Bombay.

When I entered the clinic, the doctor and his assistant was there and the assistant, and receptionist asked, ‘who is the patient?’ And I said, I and I paid the requisite amount of the fee and when I entered doctor to see, he asked, ‘have you come alone?’

Yes, I have come alone.

So, next question he asked was, ‘are you still working?’ Then I said, yes, doctor.

Then he asked that, then he suggested, ‘I think Mrs. Singh, the best thing for you, I would suggest is to go for DBS’.

DBS is Deep brain surgery, he gave me a literature to go through it and then my husband called him, rather he gave a call to my husband and told details and then my husband’s research started for DBS.

6:40 – Could you describe Deep Brain Stimulation and share what the procedure was like for you?

It stands for Deep brain surgery and actually two electrodes are put in your brain and it is connected through a wire to a machine here and then it maneuvers your movement, helps you to maneuver your movements and it is, after the surgery, six months it is programmed, but it is a very big surgery because, and a dangerous one too, because it is six hours or seven hours of surgery time it took, because I was taken in, in the, around eight o’clock in the morning and then my entire head was shaven because two electrodes had to be put and it was fixed through a kind of a, what do you call it, a case, so that my head could not move and then a machine was put and, and this brain surgery is done when you are actually conscious, not when you are unconscious, because the brain does not feel any pain.

And why it is done? Basically because to see, because there are these, when the electrodes are put, the brain cells can be touched and the area it can be touched, anything can happen.

So, every time they did the piercing or whatever, I do not know what they were doing behind me, but every time they asked me to move my hands, legs and cognition, where are you, and do this (stretches face into a grin).

So, probably they were checking all the parameters, my cognition and my movement, that it is not affected.

So, later on for this, putting up this machine, it is a charger actually, which I have to charge weekly right now, for half an hour and then it’s, after six months of the surgery, I was programmed and since then my movement, my sleeping pattern is thoroughly normal.

That is one very big thing that I can say because sleep actually induces natural dopamine, which is a deficient in my case.

So, sleep is taken care of and my movement also and more so, when anything or I slow down or anything, I have to keep consulting the doctor and then they program accordingly.

And a very important thing, one thing I missed, that DBS actually halved my medicine, because the medicines in the long term have certain side effects.

So, that is also done.

I have five tab…five tablets a day, three hourly.

9:40 – What lifestyle changes have you made after DBS?

The kind of person I was and the kind of person I became because of this disease was a sea change.

First of all, I had to accept it.

If I was not accepting it, then it would have been very difficult for me, because you can’t even imagine right now what I used to do, I was, I used to do correction of notebooks in a jiffy and answer paper and I was very good with students.

So, and before you could think of anything, I could just manage to do that work.

So, when I slowed down, it had a great impact, but I was not, I did not give up hope.

I had to think ways of doing things better, because I am not that kind of a person who will lament, because lamenting doesn’t help.

And ‘fret for the things when they come and find for a solution’ is my motto.

Yes, worrying has a relation with the funeral pyre, worrying is like the pyre, it burns you slowly like a fire.

And like, working as a head of the school was not easy, it required everything.

And most important, I am very good learner, so, when I left my job as a teacher and HOD for four schools, for history, I think that was a very good exposure to me from DPS Patna.

And I, again, I was thinking of heading a school, then I had asked somebody that ‘will I become a principal?’, because by that time I had lost the swing of my arm and my leg was trailing.

Then that person had said that, ‘be positive. I think somebody who thinks that the principal does not need to think with her feet, that person will give you a job’.

And actually, my interview very, went very well.

And I was a founder principal of a school, Millennium World School in Patna.

And right from establishing the school till class 12th, and then came my retirement age, 58 years.

So, then also, it was sudden, because I was not keeping fit in the sense, when I turned 58, I was not keeping fit, because I could not give time to myself, because I am a very honest worker, I think somebody is giving you a salary and I was blessed to be with a job till 58, so, to decide to retire was also a big decision, but I took it and my family support was there.

For some time, in order to understand my problem also, I did a counselling course.

And doing a counselling course, the course itself worked as a counsellor for me.

12:55 – What activities or interests do you enjoy focusing on the most these days?

I think, Nishi Singh survived is the main thing, because if you are working for six, seven hours, and then all of a sudden, there is a kind of a vacuum, then you have to think what to do.

So, some of the time went on, because I had become a poet.

I wrote English and Hindi poem, and that book is also published in my name, that is Nishigandha.

Ho chhaya kitna bhi saghan andhera
Ho chhaya kitna bhi saghan andhera
Vipattiyo ne dala ho chahu aur dera
Hausle iske kabhi nahi tutenge
Hausle iske kabhi nahi tutenge
Zindagi zidd hai, jeevan ankur futenge

Every time you have to reinvent yourself.

So, I thought, ‘what is best in me?’

I could talk, I could present my facts as a teacher or these, these things I was trained to do, so, I put two and two together and started a podcast, that is “Unfiltered Voices”.

So, this way I meet people also, which I am very fond of, and then talk to them, and I have to do a lot of research on them.

So, I think I am happy.

And sometimes, since I am a passionate history teacher, I teach children also.

So, that takes care of my entire day.