What is ALS?

Amyotrophic lateral sclerosis, sometimes referred to as Lou Gehrig’s Disease, is a neuromuscular illness. ALS causes the death of motor neurons in the central nervous system. ALS is progressive, which means motor neurons do not die simultaneously, but one at a time or a small number of them at a time. The loss of mobility will also prevent adequate motion and exercise needed to maintain muscle mass, thus causing muscular atrophy. Most often, people are diagnosed after the age of 40. The average life expectancy for a person with ALS is between 2 and 5 years, however some individuals have lived less than 2 years. Others, like the graffiti artist Tempt, have lived for over 7 years, and in a rarer case, Stephen Hawking has lived with ALS for over 50 years. A large percentage of people with ALS die due to respiratory failure. ALS is always fatal.

Symptoms include difficulty swallowing and speaking. Muscles may ache or burn after routine exercise. Other signs are a limp or “dragging foot”, and a thick, deep voice, similar to cerebral palsy. ALS’s likeness to other neurological and neuromuscular illnesses makes it difficult to diagnose.

Yesterday, a local musician I’m acquainted with, posted a video of himself doing the ice bucket challenge for ALS. The purpose of the ice bucket I still don’t quite understand, but the videos that people do involve shout outs to friends/family they know to donate to ALS research. I appreciate the sudden outcry for effective treatments and a continuing search for a cure for this disease.

I have a feeling that such an outcry is late, because it takes a lot to understand what ALS is. Not just what it does physically, but what it does emotionally to those who have ALS, and what it does to their family members. There are many serious and terminal illnesses that people can go through in solitude. But when one person is diagnosed with ALS, their friends, family, neighbors, co-workers, are all diagnosed with ALS too.

It takes away your energy, and it can make you feel like a burden to other people. You can’t do everything that you used to do anymore, so you have to rely on people to take care of you. And if your caregivers aren’t doing their best to look after you, you can’t always say what you need, how you need it and what is hurting you.

You cannot control your body, you can’t touch your body, and in order to get somewhere, someone has to carry you. Simple tasks like going to the bathroom without assistance, brushing your teeth and hair, even scratching an itch are now a challenge, and as the disease progresses, impossible.

If you want to spend time with your friends, you are either too tired or don’t feel like struggling to be part of the conversation. You have to stop driving because sometimes an officer might confuse your delayed speech for being intoxicated. Sometimes you may feel too embarrassed to go out in public, for fear of what people will think of you.

Sometimes, your friends or family get mad at you if you can’t write back to them or just don’t feel like it because you’re exhausted.

But most of all you are frustrated, because you can’t change it.

I once told someone I knew who had been recently diagnosed with ALS, that the human mind is very powerful. That maybe the reason why someone like Stephen Hawking has lived so long with ALS is because he lives a real life, not a prolonged one. That this does not define you, and you will always be who you are. ALS can take away many things, but it cannot take away your mind.

Since we have to live with ALS, we deserve to live well. We deserve love, patience, and empathy. We deserve to be treated like human beings. And most of all, we deserve a cure.

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