The Truth about ALS

 At the time I started falling sick, I was leading a very busy and self dependent lifestyle. Living alone in a foreign, non-English speaking country for many years pushes you out of your comfort zone and you get used to figuring out everything on your own. My typical weekday would start with the German language A2 level revision class from 6 to 8am. Then I would quickly get ready and login for work, checking my mails while eating muesli. I would whip up a quick lunch at noon, logout at 5 or 6pm and then step out for a visit to the supermarket or just a walk if it was not too cold, return home, cook dinner, watch some TV. Finally I would retire to bed after doing the dishes, which was my least favorite task. On weekends I would again attend the German language B1 level class from 8 to 11am, clean the apartment, do the laundry, and maybe treat myself to a good meal at a restaurant. I had to troubleshoot all issues on my own, be it a clogged drain or a fixing the hot water. All while ...

That is the question.  The first time I came across a eye tracking device was when I was browsing through videos of ALS patients soon after my diagnosis. It was being used by a completely bed ridden woman in the US. I presumed the device was tobii. But I never thought that I would need something similar so soon. The whole of last year was about me becoming more and more quiet. As my speech became unclear I began adapting. I stopped initiating any conversation, I spoke only when spoken to. I never speak out of context, I only mention something if it is absolutely necessary. I  mostly use keywords or nod yes or no. And sometimes I just look at something I need. The o.g. Eye gaze so to speak. Lol. However there are too many misunderstandings with this approach. Also it is tiring because its like playing a never ending game of dumb charades. But mainly it meant that I was only able to communicate the bare necessities and not express myself which is a basic human requirement. ...

Yes i  have been mia. Facebook probably thinks that I am dead. Amazon, Nykaa and Myntra are sending me We miss you emails. But I haven't disappeared from the face of the earth. At least not yet. The fact is at the age of 32, I started showing weird symptoms and was eventually diagnosed with ALS. Let me give you a moment to Google that. Yes it is the Stephen Hawking condition. Yes it is fatal. And no there is no cure yet  Needless to say my life completely changed after the diagnosis and to make matters worse i was progressing rapidly. I had to move back to India. Soon I lost the ability to use my hands and arms. I continued to work using my knuckles to type which by the way is slow and painful. Gradually my legs were affected too. As of today, I can't do much with my hands. They are pretty much lifeless, I can't eat food on my own, can't use the TV remote, or even my phone. It has been so long since I touched my own face or combed my own hair. I can no longer sit up or ...