The Truth about ALS

 I am sure that the number one problem that all families of ALS patients face is Communication. Not only because ALS affects speech but also because most people don't know what to say to a person who was "normal" until now but is sick and disabled suddenly. This leads to situations of awkwardness, stress, despair, weird silence, or simply confused looks or blank stares. So I decided to jot down some tips from my own experience. Some of these might seem like stating the obvious, but trust me they are not so obvious. But they are very much doable. Be in a visible range while speaking  The patient's range of neck movements maybe limited. Also the patient can gauge from the other person's expression whether the said thing is understood or not. Be at patient's eye level  When you are stuck to a chair or bed the whole time, your perspective of looking at the world literally changes. It would make things a lot easier if I didn't have to look up all the time while...

 The very first thing that I bought for myself from my first salary was a red lipstick from Colorbar. I was always interested in make up. In fact as a kid I wanted to be an air hostess because they got to wear make up everyday. This lipstick was the first of many as I carefully curated my vanity bag after diligently perusing several beauty blogs and vlogs. Then came the pink lipstick in cream finish from Lakme and later the crayon in matte finish which was all the rage then. The foundations followed along with the eye shadow palettes one each for summer time bright looks and deep autumn looks. You name it, I had it. Concealer, highlighter, mascara, eye liner et al. I slowly graduated to M.A.C. And Sephora with time. Now my vanity bag is gathering dust in my wardrobe. The last time I put on make up was Diwali 2022. Even then I had to support my right hand with my left. The same with clothes. I have a wardrobe full of pretty dresses both Indian and western which have no use anymore. ...

 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...