The Truth about ALS

 Diwali is over. I enjoyed shopping online. Not only did I update some home decor but also shopped for my family. I like beautifying everything lol. Well I also shopped for myself. While Myntra was suggesting me which size to buy based on my last purchase several months ago, I knew better. I stopped looking at the mirror a long time ago, still I knew how thin I've become. So I chose a smaller size and ordered two t-shirts. The first one arrived and I realized that even that was too big. I canceled the second one, and then I ordered an even smaller size. This one was perfect. At least for now.  I must the first young woman who is not happy about becoming thin, lol. Losing weight is different from losing muscles. In fact that is what the A in ALS stands for. Amyotrophic. When a muscle does not receive any signal from the brain for long enough, it dies. Based on what I have read this is irreversible. No matter how much protein you consume. This muscle loss gives an unnatural look...

 If a fairy godmother turned up and granted me a wish to be ALS free for a day, how would I feel and what would I do? For starters, what a joy it would be to wake up from bed whenever I wanted without being manhandled. To put my own two feet on the floor and feel my own weight! Bliss! I would brush my own teeth without getting hurt in the gums and take my own shower in a non hurried way. They say stop and smell the roses, well I would stop and smell the shampoo, lol. What a pleasure to pick and wear my own clothes and look trendy for a change. I would comb my gently without yanking out a few locks. Now that I am ready and looking top notch its time to head out to eat. Oh how amazing it would be to watch and experience the outside world, I wonder what all has changed. At least I know that my city has a new metro line and a new sea bridge, well I sure would love to experience those. Although I have lost contact with being in the crowd so I would have to brave it out and reach my gast...

 A common and frequent advice I get from everyone is to be positive. I am sure a lot of other patients get that too. For some reason whenever someone says this to me, I hear it in Kim Kardashian's voice and I also treat it like just that. I mean what am I?  An integer? An ion? A proton? A magnet? Or a blood group? That I should be positive. Of course I know the potential of a positive attitude in life. But it is easier said than done. Often the severity of the suffering is not comprehensible to non patients. Plus there are lots of situations beyond my control. Take yesterday for example. It was the day of Raksha Bandhan. It was not a public holiday, yet my hired caretaker took a leave. I mean she is just looking for an excuse to not show up. That's a story for another blog. Besides she informed us at the last minute. This meant making frantic calls to find a substitute. A substitute obviously does not know the nitty-gritties of the job so I invariably end up getting injured, a...

 ALS feels like you are thrown into the deep end of the pool. There are so many new feelings that you feel, most of them unpleasant, so many new situations that you face that no one prepares you for. In fact most of them may be overlooked. That is why I have tried to list them down. Lack of Privacy  You can kiss your privacy goodbye because when you need help for anything and everything there will be always someone around you. Not to mention that a bathroom visit is a whole event in itself, so everyone knows when you "go". So embarrassing! Sure you get alone time a lot, but the compromised privacy definitely takes getting used to.  Random Touches Thankfully sensory nerves remain unaffected in ALS. But the amount of physical interaction I need because of my limp body is something that I had to get used to. I have to be stood up, sat down, pushed, pulled, transferred, yanked, jostled to be comfortable enough. Wheelchair rides I need a manual wheelchair that has to be pushed...

 It's July. Two years ago this month  I took the dreaded EMG test. It was my second time taking this test after a couple of months. And yet I wasn't mentally prepared for it because I knew what was about to happen. EMG is a very painful test in which they insert a needle one by one into every major muscle of the body, including back, both shoulders, both upper arms, forearms, hands, abdomen, both thighs, calves, feet, and even the face and the tongue. Yes, because I had complained of heaviness in my tongue I had to get it pricked as well. After pricking they ask you to flex the muscle, this is the point where it hurts the most.  The Arabian Sea on a cloudy July day The hospital at which the test was conducted was quite far away from home, and the test results would take another two hours, so I had some time to kill. We visited the Gateway of India, a popular monument overlooking the Arabian Sea, and followed it up with lunch at Cream Center, one of my favorite restaurants...

 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...