ALS – How Your Life Can Change in an Instant

Today, we are pleased to be joined by a wonderful ALS advocate Rob Robertson from Belleville, Ill. Rob proudly served our country in the U.S. Army for many years that included time in an elite fighting force “The Screaming Eagles.” He and his family faced many challenges over his lifetime, but nothing could have prepared him for his ALS diagnosis. Read his story and how he is bravely fighting ALS as an advocate, by raising money for research and teaching his fellow veterans and others about this devastating disease. Thank you for sharing your story Rob!

By: Rob Robertson

Me and my wife Connie

In my younger years I played baseball. Very early on I watched a Lou Gehrig movie on television. I always loved Gary Cooper too. I had heard of Lou Gehrig’s Disease, but that’s all I knew. Like everyone else I had to go do a Google search. Since my diagnosis, I have had too many people say to me, I have heard of ALS but what does it do?

It was early March 1976 – I had always wanted to be in the military. Just six months before my high school sweetheart had given birth to our first daughter. I had been working at odd jobs and I needed stability. Also, a guaranteed paycheck would not have hurt. We talked and we agreed that I would join the Army.

My favorite and best times were during my first assignment. The 101st Airborne Division, Ft. Campbell Ky. We were not marching. Instead, we were flying in helicopters and jumping out. The 101st was steeped in history and tradition. I was proud to be a member of this elite fighting force called “The Screaming Eagles.”

From there we spent three years in Alaska, another three years on Recruiting Duty in Tennessee and finished my time in the Army back at Ft. Knox, KY. By this this time the Army had sent me to training in about 40 of the 50 states, not counting three months in Germany and Belgium, and three weeks in Panama.

By 1985, we had 3 daughters and had traveled so much that we thought it was a good time to go home. I landed a job as a supervisor at a country club. Not really what I had in mind. I wanted to become a police officer. But it did pay the bills and the money was good and the next thing I knew one year turned to five and five to fifteen. But I never gave up that dream.

I applied, never thinking I would get the job, as a Public Safety Officer at a major university. I did though and even at an advanced age I succeeded and I was good at it. After getting hired, I even applied to be a Bike Patrol Officer and was accepted, becoming the 3rd oldest officer ever to have that position.

It was great! Spring and fall were the best of course – patrolling around a university being dispatched for calls for service of all kinds.

Then it came, I started getting more tired, more easily. I worked the night shift and was having trouble sleeping during the day. I had heard about a medical condition called Restless Leg Syndrome. My sister had that, so I made a doctor’s appointment. She gave me some medicine; however, she said she would like me to see a neurologist. No big deal, my sister said she had to do that too.

I asked my sister if were her legs twitching too. She said no. Oh well – off to the neurologist I went. He said I think I see a problem and I would like you to get a MRI of your whole spine and some blood tests. I asked him what he saw and he politely told me not to worry. He was just ruling some things out. Needless to say, I did worry.

I completed the tests. The doctor called and said at the next visit it would take a little longer, since he wanted to do some tests in his office. Now I really started to worry. The test was an EMG and a nerve conduction test. After these tests, he told me that he couldn’t be sure, but it was just a possibility that I had motor neuron disease. He explained that I should not be too concerned, but he would like me to see a specialist in ALS, also known as Lou Gehrig’s Disease.

Let’s fast forward through three more EMGs/nerve conduction studies and too many trips to the lab to give blood.

November 18, 2015. Third EMG and nerve conduction study. At the end of the test, the doctor doesn’t have to say it. It’s written all over her face. For my wife Connie and I, life as we knew just changed in an instant.

A person can take this diagnosis in many ways. I have decided to channel all my energies into making each day special – whether it be a day with a child or grandchild. Also, I have decided to become an ALS Advocate. For two years in a row, Connie and I have joined hundreds of other ALS advocates from all over the country at The Association’s National Advocacy Day in Washington D.C. to tell our story and gain support for important ALS legislative initiatives. Below is a picture of me with Congressman Mike Bost of Illinois, a retired Marine and photos from this year’s Advocacy Day.

I am a veteran, but I still serve. Instead of jumping out of helicopters, this Screaming Eagle is fighting to end this wicked disease. I reach out and share the latest research, treatment and information with my fellow veterans and all those impacted by ALS.

Social media is here to stay and Facebook is a mighty force to get the word out.  As a member of a group on Facebook called “ALS: We Are All In It Together,” I participate in live chats where people can ask me questions about treatments, like the new drug Radicava and the ALS priorities we discussed with our legislators in Washington D.C.

I have heard many times that ALS is not a rare disease, but an unfunded disease. I enjoy and find great satisfaction in raising money for The ALS Association. Last week, I cut the ribbon to start the St. Louis Walk to Defeat ALS. My team, Team Army, raised over $5,900 dollars to go toward ALS research!

Rob Robertson Ribbon Cutting

I also truly believe in the importance of ALS awareness. The more people know about ALS and what it does to people like me, the more the money for research will be raised, leading eventually to effective treatments and a cure. Let’s beat this together!


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