Battling ALS, Walker sees his dream goal come true

By on June 7, 2017
Randy Walker, a 1982 Ephrata graduate currently in his fourth year of battling ALS, got his wish of seeing son Calvin graduate Tuesday night. Photo by Jeremy Bischoff

Randy Walker, a 1982 Ephrata graduate currently in his fourth year of battling ALS, got his wish of seeing son Calvin graduate Tuesday night. Photo by Jeremy Bischoff

It was shortly after he received the awful news of his ALS diagnosis on Jan. 30, 2014 that 1982 Ephrata High School graduate Randy Walker set the first goal of his battle.

He wanted to see his son Calvin graduate from his alma mater in June of 2017.

And though Mother Nature threatened at times to put a slight delay on the realization of this goal with ominous skies that grew darker as the alphabet of the grads moved toward the “W’s,” — the goal was achieved Tuesday night.

The ceremony concluded just as the skies opened up and sent the grads, friends and families scrambling for cover.

And there, right by the 50-yard line, a former Marine sat in his wheelchair smiling, as his wife Lisa tried to keep the pouring rains off him. But he didn’t seem to mind a bit, for that goal had indeed been reached and nothing was going to dampen the spirits of Randy— or his son— for that matter.

“It means the world to me that my dad was able to hang on long enough to see me graduate,” Calvin said Tuesday night. “He recently told me that all he really wanted was to see me walk across that stage and receive my diploma. I am truly thankful that my dad could stay for the whole ceremony despite the inclement weather.”

Randy said he never fully understood what the term surreal meant until his was diagnosed with the disease that has no cure and is commonly known by the name of its most famous victim, Lou Gehrig. ALS, or Amyotrophic Lateral Sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord.

However, very early on he stated how important it was to him to see Calvin accept that EHS diploma.

“Yes I did. Took a long time to wrap my brain around the fact this is real and not a bad dream,” Randy said, answering emailed questions that he responded to with his eye reader. “I told Dr. Simmons, at my clinic appointment, about my goal. I also said, whatever it takes, I’m all in. So here I am.”

Randy was asked about how his emotions have evolved since the diagnosis.

“In the beginning, I had so many emotions swimming around in my head, I was just numb,” he said. “The support group had a big influence on me, all positive. (It) totally changed my mindset.”

About a week ago, he was asked how his emotions were now, so close to seeing this goal realized.

“I still can’t believe it,” Randy said. “It’s like, where did my little boy go. You know about that. I have a hard time putting my emotions into words. Three years ago I had no idea if I would even be here to see it happen. Now I am so excited, I get wet eyes just thinking about.”

But what does he think was the key to getting to this point?

“A positive attitude goes a long way,” he said. “But most of all, I’m not ready to go. Lisa and I became grandparents in March — another reason not to give up. I still have two goals coming up in August. Calvin turning 18, and later in August, he’s off to Penn State. So proud!!”

Indeed Calvin will be heading off to PSU’s main campus this fall to major in chemical engineering.

“Calvin is so smart….it boggles my mind,” Randy says.

Certainly when one considers the battle against ALS, it’s easy to think about the challenges put in front of the patient. Randy looks at it a bit differently.

“It’s not so much the challenges, it’s more about the things I can no longer do….hug Lisa, hold her hand, and just be able to talk to her.

“One of the things I missed being a part of, was being able to help Calvin learn to drive. I’m crying just writing this. I wanted so badly to be a part of that.”

Randy then described a bit more about what he’s going through.

“Other than a hose sticking out of my throat, just looking at me, you can’t tell something is wrong,” he said. “This may sound strange, but despite having ALS, I am otherwise healthy. I am the same weight I was before ALS. I look the same, I just can’t move.

“The best ALS analogy I’ve heard is this,” Randy continued. “We are prisoners in our own bodies. We are aware of everything going on around us, we just can’t do anything. If you would like to know a little bit about how it is to be me…try this one-hour test. It will be harder than you think. Get comfy in front of the TV. Make sure you cannot reach your phone or the remote. Standing up to get them is not allowed. If you want to change the channel, you must ask someone else do it for you. This next part will prove to be most difficult, because it’s a reflex action. If you get an itch, and you will, you may NOT scratch. If you survive the hour, without breaking the rules, hats off to you. Then think about that being 24/7. Welcome to my world.”

But don’t misunderstand, each visit with Randy results in lots of smiles coming your way. So just how is he able to do this?

“Well I figure I have two choices,” he replied. “I can be angry and sad, or be happy for every day above ground.

“Four weeks ago we met Chris at Longwood Gardens,” Randy continued. “He’s had ALS for 24 years — he’s still smiling.

“As Jimmy V said, ‘Don’t give up, don’t ever give up’,”

“I am not going without a fight!!!!”

2 Comments

  1. Darlene Brown

    June 8, 2017 at 8:28 pm

    Congratulations ! I was so happy to read this story. Our son, Andrew also just graduated Rom high school and is 18. My husband also has ALS, he was diagnosed March 8, 2016 and we prayed he would be here to witness our son graduate. Living each day, striving for goals (our next is our daughter’s wedding in August) and celebrating our victories keeps us going. Again, congratulations and enjoy the summer together.

  2. Dale Miller

    June 29, 2017 at 12:51 am

    Semper Fidelis Randy. I am a retired Marine with ALS, and I am happy to see that you still have that gung ho attitude instilled in us so long ago in Parris Island and Quantico. I am a Penn State grad, as is my wife, son, and daughter in-law,so I am rooting for your son to have a great career at PSU. Keep fighting my friend. Someday we will beat this crazy disease. All the best to you and your family.

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