The Truth about ALS

 It is said that only the wearer knows where the shoe pinches. But if you want to know how it feels to be trapped in an ALS body, try the following. Next time you get an itch, don't scratch it. If an eyelash gets stuck in your eye, don't touch it, let it be. Drink all beverages through a straw without using your hands, for a day. Find a comfortable seat and sit through an entire movie without moving an inch. Communicate a sentence without speaking or using non verbal cues. I could go on and on but you get the gist. ALS brings along with it, it's BFF that is Discomfort. A general feeling of uneasiness in your own body. Even a paper cut on the pinky finger is enough to make us feel uncomfortable, so you can imagine what is the magnitude of discomfort from a disease that affects the whole body. Firstly there is the feeling of heaviness. My limbs feel heavier to move even slightly, although I have lost muscle. As if I am living on some planet with greater gravitational force th...

 I have an oversimplified daily routine. Yet my day can turn out to be either one of the following.  Something somewhere goes wrong. I get irritated or disappointed or sad. As a result I cannot eat properly or drink water. I get more frustrated. As a consequence I can't sleep well and wake up cranky the next morning. Leading to a vicious circle of bad days.  Or it could be the other way around. Most things go well. I can eat well and stay hydrated. I can sleep relatively well and start off a virtuous circle of calm days. This election season I vote for Peace of Mind and am consciously trying to have more days of the latter kind. After all, what is the use of all the education and corporate exposure if I can't apply the learnings to the most difficult situation of my life? In fact this should be a milestone that we all must strive to achieve as shown here in my drawing from few years ago. But there are a few challenges. Firstly the base level of frustration is already high...

 The other day I was listening to the song "Tripping, stumbling" by Fergie and I couldn't help but laugh. The song is about falling in love, but for an ALS patient like me it has a different meaning altogether. I tripped and fell several times when I could still walk. Anyway it got me thinking about all the phrases, proverbs and idioms that have a completely different meaning for those impacted by ALS. Here are some that I could think of. To fall on deaf ears - When you sincerely describe your symptoms to your neurologist To get cold feet - When your feet are cold and swollen from lack of movement  To take it with a pinch of salt  - When you drink electrolyte water to relieve muscle fatigue  To bite off more than you can chew - When you literally bite more than you can chew  To have two left feet - When you request your caregiver to scratch your left foot but they scratch the right one instead  To swallow your pride - But first chop pride into small pieces ...

 The first time I heard of a city called Frankfurt was in my childhood in the animated series Heidi. Heidi's friend Clara lived in Frankfurt. At that time, I didn't even know which country Frankfurt was in. I just had fun watching Heidi's adventures. My sister and I would even sing the Japanese title song loudly even though we didn't understand the words. Many years later, I re-watched Heidi, in the form of a German movie. This time, I was in Frankfurt myself. It was as if life had come a full circle. Coincidentally, Clara is paralyzed, she cannot walk, and has to sit in a wheelchair all day. What we can learn from Heidi is her ability to find joy in the most adverse conditions. She is an orphan, her aunt can't care for her anymore, and she is left in the care of her grumpy grandfather. Yet she finds happiness running up and down the Swiss mountain with her friend Peter, spending time with Josef, the lazy St. Bernard, chasing goats all day, eating cheese and sleepin...

 A few years ago, the Ice Bucket Challenge had become popular. Everyone from film stars to sports legends were posting videos of them getting drenched in icy waters to jump on to the viral trend. But I wonder how many people knew its real purpose. The challenge was meant to create awareness about ALS and to expedite the research for a cure . Like all things viral, the trend has long died. And unfortunately so have many people from this sadistic disease. ALS has been known to mankind now for almost a century, but we are yet to make the breakthrough. All we have is one approved medicine - Riluzole, sold under the name Rilutor in India. The medicine claims to prolong survival by 2 to 3 months. 3 months? Really? Even a season of Indian Idol lasts longer than that. This means I would die before knowing who won the season. LOL. I can't help but wonder what is taking so long. None of the neurologists I met seemed disturbed that they were faced with a problem that they could not solve. The...

 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. ...