Four Years And Counting

by Nishant on September 23, 2010 · 6 comments

September marks the four year anniversary of the onset of my disease, and three year anniversary of the diagnosis. Over all these years my disease hasn’t stopped progressing and it is it isn’t showing any signs of slowing down either, but I am one tough cookie as well. I have learnt to live with it and always keep myself one step ahead of it. Lately I have noticed that my neck muscles are getting weak making it bit of a challenge for me to keep my head up while eating. Weak neck also makes it hard for me to cough. But the good news is that my breathing hasn’t deteriorated further since I have started using the BiPAP.

Some of you recommended that I should write something for my daughter which will enable her to connect with me. Since I didn’t want to leave letters for her and I didn’t want to preach her either with my writing, it was recommended that I write a book which is some sort of autobiography. Based on the suggestions I received, I have started working on a photo book for her. It is going to be a chronicle of things that have happened in my life starting from the day of her birth and ending on some day in 2010. I hope it will help her in connecting with me whenever she need me. Here is the cover page of my book.

So what do think? Is it something she would love to have? This is mainly for my daughter, so I am not sure if it will be of any interest to others. So far I have raked in about 70 pages and I am spending better part of my day working on it.

Today happens to be my mother’s birthday, so “Happy Birthday Mom “! I don’t how I would have been if it hasn’t been for my mom. She has been with me from the day I started needing help with my activities of daily living. Even though my condition worries her a lot, she has kept herself strong and helps me with a smile. Here is an example of the her helping nature: These days I find it very hard to sleep at night as I am unable to toss and turn myself on the bed. So my mom helps me change sides through out the night. She has do it every hour or so to keep me out of pain, thus having sleepless nights. But she is always out of her bed by eight in the morning to help me start my day and that too with a smile. Hats off to you Mom!

Tagged as: ALS, How am I Doing?

{ 6 comments… read them below or add one }

Shilpa September 23, 2010 at 1:29 pm

awesome cover page!I think Anika is going to love it!
I think you are like your mom tough cookie )
Happy birthday aunty I hope she has a great day!

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Roshni September 23, 2010 at 2:37 pm

Nishant, this is just the perfect picture. You have been and will continue to be an inspiration to her and everyone around you. Keep up the good work, Anika is going to cherish everything you do for her.

Happy birthday to your mom, mom’s really are selfless and you have shared an excellent example of one.

Please take care

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Anton September 24, 2010 at 8:24 am

How old is she?

My three little monsters can barely write their names.

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Nishant September 26, 2010 at 10:40 am: Anton: My troll is four and she is just starting to write. This picture was taken in summer of 2008, and my wife helped her write it.

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Pinak September 24, 2010 at 9:13 pm