The ALS Association

I Don't Let ALS Define Me

Rich Z. Fishers, Indiana

First symptom June 2012, fishing in Colorado…issues with gripping rod. Continued issues with buttons, tying shoes with left hand. Went to Doc in July, dismissed as Carpal Tunnel due to my being a drummer. I still remember Doc looking at me and referring to my atrophy saying, “I have seen ALS start like this” (was shocked he would just blurt that out, so casually), and then IT moved to my left foot, playing hockey in Sept - no control, and Drop Foot had begun. Spasms, cramps, hoarse voice followed that fall and by Christmas, I had diagnosed myself. (The internet is a BAD place.) Hockey was done, I tried to skate in November, and that was the last time I would step on the ice…but my drumming thrived and still does today. Play in a cover band out of St. Louis - Stingray doing 22-25 shows a year. Here is the kicker, I live in Indy…driving back and forth for shows, it’s my therapy when I am behind my kit with my boys. Moved onto 12/27, appointment with my first neurologist; five minutes in, he was ready to put me in my coffin. So insensitive and carefree, he didn’t care about me. I went on my crusade to prove him wrong in Jan 2013. MRI’s, EMG’s, NCV’s - nothing found, except issues with my nerves and muscles communicating. I ended up at IU Neurological Center on 2/15/13, the day time stopped…I was diagnosed with ALS. It took about four months to wake up, not letting this DEFINE me. My family, friends, company (LIDS SPORTS GROUP, best in the world) - have been so supportive. I continue to drum, modifying my style to deal with my hands, but playing well and loving every show that much more. Special trip upcoming in July as we travel to Hollywood, yes L.A., to play at the Whiskey a Go-Go!!! Highlights of 2013 - #1 Team of All-Time in Indiana – ALS Walk…raised over $40K!!! Richie Z’ Rocking Walkers. Met some hero’s in 2013 – TOTO! (Mike Porcaro, original bassist diagnosed in 2007), what an honor to hang out with them before the show in Dayton in August 2013.  Huge Yankee Fan (God Bless You #4, Lou G, never knew we would something common), met Mariano Rivera who had just done an event three weeks prior in New York City for the Association (wow, what an honor). I continue to live each new day to its fullest. I smile when people at work call me an inspiration, really? My beautiful family is attached, Stacey and Kelsey (2 ½); THEY are my world. Thank God I have them, so blessed. Three month checkups have been great, all tests going well…last on 2/25 IU in Phase 1 Trial for a new treatment, Phase 2 could be my chance. I can LIVE with ALS and will LIVE.

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