Living With Another Scary Neurological Disease – ALS


Last week I posted a New York Times article where five people with Parkinson’s disease told their stories through text, audio and photographs.

This week the Times is running a similar article about people living with ALS (amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease).  Through pictures, audio and text, we learn about five people, and frequently their care givers, who are dealing with and/or suffering through this terrible illness (more “and” than “or”).

For the most part I’d say everyone who is interviewed displays great resilience.  But there are many heartbreaking points, too, such as the father who has a slowly progressing version of ALS and needs to decide how much money he wants to spend on keeping himself alive as long as possible, as every dollar spent on his medical bills is a dollar that will not go towards his sons’ college education.

Before I was officially diagnosed with Parkinson’s disease, I saw a neurologist for about a year, at the end of which he narrowed down the options to what was ailing me to either ALS or multiple sclerosis.  He said he’d finalize the decision after a month of continued observations.  So for a month I lived with the threat of ALS hanging over my head.  It was horrible.

I wrote about this terrifying experience, and you can read it here:

At the end of the month, the neurologist pronounced that I didn’t have ALS, I had MS, so I lived with that diagnosis for a while (rather happily, too) until the doctors who saw me for a second opinion said I actually had Parkinson’s disease.

I am always thankful that I have PD, not ALS.  It was great a few years ago when the “ice bucket challenge” raised $115 million for the ALS Association during a riotous 8-week period.  It would be even greater if that happened again this summer.

Any takers?


 

Leave a Comment

Your email address will not be published. Required fields are marked *