Posts

Showing posts from April, 2024

Tongue in Cheek

 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 or mash it nail

Heidi-ng in plain sight

Image
 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

On the rocks

 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