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I am a wife, a daughter, a sister, an aunt, a cousin & a best friend. I am a poet, a lawyer & a survivor. I've learned that God will give you a second chance.

Sunday, August 17, 2014

Amyotrophic Lateral Sclerosis

Amyotrophic lateral sclerosis. Do you know that that is?

Robin Williams and the Ice Bucket Challenge are the two things that have been trending on my social media this week. I thought about writing separately about these topics, but I don’t know which one to pick first. So I thought I’d write about both.

I do not have a tribute to Robin Williams. I am deeply sadden by his death. When my husband said, “Did you hear about Robin Williams? He’s dead,” on Monday night I hesitated before asking how. When he said it was an apparent suicide I paused before saying, “That’s not surprising.” I had truly been wishing that he would say “heart attack” because, let’s face it, suicide carries with it the stigma of mental illness.

As the details of Mr. Williams’s death and medical condition come to light I am struck by the reality that mental illness is nothing more than a disease of the brain. When I say “nothing more” I do not mean to trivialize the severity of such a disease. Like cancer, it is serious. Apparently Mr. Williams had recently been diagnosed with Parkinson’s disease. One of the symptoms of Parkinson’s is depression. I say symptoms because it is not just a side effect. Think about it: Parkinson’s is a disease of the brain. So is depression. Again, it’s not surprising.

I personally know two people who are being treated for Parkinson’s and depression is very real. There are medications to counteract the depression, but often the depressed person does not even realize they are depressed. It is a vicious cycle and it is important that loved ones and medical professionals recognize it. I’m not a huge fan of big pharma, but in this case, please, take the medication.

Amyotrophic lateral sclerosis is commonly referred to as ALS, and known as Lou Gehrig’s disease. The Ice Bucket Challenge is supposed to “bring awareness” to the disease. It is actually more than that. If you accept the challenge you have to make a small donation to ALS research and dump a bucket of ice water over your head (no thank you). If you refuse the ice bucket you have to donate at least $100. I first learned of this challenge several months ago when my friend Joann posted a video of herself on FaceBook. The challenge has since become the summer past time here in New England.

Apparently donations are up. And this is a good thing. My mother’s best friend died from ALS. My college roommate’s father died from it. Recently a close law school friend passed away from the disease. According to the ALS Association, amyotrophic lateral sclerosis is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. [Source: www.alsa.org]. Another disease of the brain.

So while the two seem unrelated, both touch on diseases of the brain. And I’m pretty sure Robin Williams would be the first one to dump a bucket of ice on his head while spewing some wit that would make us all laugh.

To make a donation to the ALS Association, click here: Create a world without ALS.

If you enjoy my blog and would like to follow me on Facebook, I can be found at The Reluctant Survivor. And on Twitter @relucsurvivor.


  1. One of my former employers died of ALS. I have also spent the last 27 years working with adults with disabilities. Depression in rampant in western society and has been stigmatized causing many people to "hide" rather than seek help. My hope would be with Robin's passing that some of the stigma would be alleviated and society would see people as people first, not a diagnosis. Thanks for sharing!

  2. I am so glad to see this disease coming to the attention of the public. It can be devastating to lose a loved on to this disease or one of it's side affects.

  3. Love & hugs to all of you. We have all been personally touched by ALS. It's a terrible disease. Like cancer, we need both awareness and a cure.