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

Robertsons
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.
RobwithcongressmanBost

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!

 

31 thoughts on “ALS – How Your Life Can Change in an Instant”

  1. I know how it changes your life. My brother passed away from ALS. He was a fighter to the very end. One day i’m sure they will find a cure to stop this disease.

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  2. Thank you Rob! My son was recently diagnosed with ALS at the age of 36. We need legislation to fast forward treatments to slow down or stop ALS. What does an ALS patient have to lose with all the time it takes to approve new treatments, they lose hope and their life.

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  3. Rob, You are an inspiration! Thank you for your service to our country and for your courage, dignity, and bravery fighting ALS. My husband also had ALS so I know firsthand the challenges of living with the disease. My best wishes to you and your family.

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  4. My husband’s weird symptoms began in early July 2016 & though I strongly suspected earlier, he was formally diagnosed with ALS in October of the same year. On February 9th, 2017 he died. It was a fast progression form of ALS which I’ve since realized isn’t all that rare. Also, you didn’t mention but I’m sure you’re aware I was told ALS is more than twice as common in veterans though they’re not sure why. Anyway, I am trying to cope with losing the love of my life (everybody says that but he really was) on a daily basis. Not easy. Your spirit is wonderful to hear. I too am doing the Walk for ALS in Ft. Wayne, Indiana. I just wish I knew more people who would donate. Happy to read your team’s amount. I’ll try to think of something to raise more funds. God Bless You, your wife, and the rest of your family! Suzanne Mountz

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  5. I remember my husband Bob the minete we got the news the very second.
    We were devistated but when they said you can have 2-5 years .I called hospice the very next day ,I think he had this disease for some time by then.
    He died 3 months later,no time to figure out anything.
    I am a probation officer and have seen so many bad things in my life, but this was the worst.
    I am so glad you are still giving a good fight, I will keep u in my prayers.

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  6. Good luck with all you do!! Hope you raise awareness and money.
    Our neighbor Bob Clark had his battle with ALS here in Sunset Beach NC.
    His wife Anita, my husband and I organize the annual Soup & Salad in February to raise funds. It has become a popular event in our community.
    We can give you more details if you would like to do something similar.
    I had never even heard of the disease until Bob got it.
    Together we are stronger ! Take care Rob !

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  7. Welcome home🇺🇸 I served in the navy as a medic/technologist/ help pilot. I am know in Wisconsin completing my PHD in linguistics/American sign language. Coming back next may to work with wounded warriors and other organizations that can use ASL, will figure it out over the next few months. My brother had ALS and we fought it for a long time.
    Your solution to fight it head on is exactly what we did and in the end we both felt it was worth the effort and time.
    I wish you the best in moviving forward.

    Rick
    Rickschroder@icloud.com

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  8. Rob, you are truly an inspiration to the many thousands of folks living with ALS; I have been working with people with ALS for over 35 years in a case management area and am always humbled and in awe of their spirits. I would love to be out of a job because of a cure!!!

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  9. Thank you for your service! Thank you for your continued service and energies towards raising awareness for ALS.
    I’ve walked for, run for, raised monies for various causes I am devoted to. My dad is a veteran and ALS survivor. This is more personal than ever. We need Awareness and we need a cure, yesterday.

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  10. Thank you for all you are doing. My brother died form ALS 3-1/2 years at 70. He was a very active person before this horrible disease. It was heartbreaking to watch him wither away!

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  11. My name is Rose Bonner and I live in Virginia. My brother lost his battle with ALS in 2000 and the following year I formed a team, Johnnie Miller Family, in memory of my brother. My family and friends walk each October. Now, again this horrific disease has attacked my sister. Please pray for her as she’s fighting her ALS Battle.

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  12. I enjoyed reading your story and I want to thank you for your service for our country,also for all your work for ALS patients! I also received the horrible diagnosis of ALS after many years of misdiagnosis and my mother also had restless leg syndrome! The acceptances of ALS is the hardest part so far!

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  13. Thanks for telling your story. My family and I understand what your going through because my father also was diagnosed with als. Unfortunately he is no longer with us. Just want to remind you that even though its hard dealing with this that God is in control and that he will get you and your family thru this like he did my family and I. I would like to get involved. Any suggestions?

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  14. God bless you and your beautiful family. Thank you for all your service to our country and creating ALS awareness. My husband Bill was diagnosed Five years ago. We truly understand all the medical tests and receiving the diagnosis. We are treasuring every day and pray that one day this dreaded disease becomes curable.

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  15. I was diagnosed with ALS March of 2017. I go to the ALS Center here in Macon Georgia they are a wonderful bunch of people and are very caring. Like you said your whole world changes in an instant and this disease is progressing far faster than I thought it would. I do have a support system which I am very grateful for. I’m still having problems dealing with this it just doesn’t seem real but when I get up to try to walk it becomes a reality.

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  16. I am Karen Baird, I was diagnosed of ALS (Lou Gherigs Disease) in 2014, the doctor told me there is no permanent cure for the disease, i was given medication to slow down the progress of the disease, at the initial stage it was not so bad till it progressed to the end middle stage were i had difficulties going about my daily functions as i constantly felt weakness in my legs, ankles and feet, i was totally devastated till my daughter’s co-worker told us about a herbal doctor from west Africa who have herbal medicines for all kind of diseases including ALS, when i contacted this herbal doctor via his email, he sent me two bottles of ALS herbal medicine through courier service, when i received this herbal medicine, he gave me step by instructions on how to apply it, when i applied it as instructed, i was cured of the disease within 20-24 days of usage. Contact this great herbal doctor via his email: dridobu@gmail.com

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  17. Reading this story is what happened to my husband in the later part of 2013. He was in Korea in the 50’s and a retired police officer. It hit hard and +/- a month or two he passed away. It can be a fast or slow disease. It can also be a genetic illness and the more information that gets out we can hopefully see it decrease. Mr. Robertson I applaud you and your wife for your efforts. May God bless you and keep you safe in your journey.

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  18. Thank you so much for your care and helping others!!! My brother had ALS and has passed to heaven… Praying new treatments are about to happen soon. God bless you and your family.

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  19. Dear Rob, Thank you for your service to our country and thank you for your continuing work to defeat ALS. We are in this fight too and praying for a cure for all. May the Lord grant you more time to enjoy life and spent time with your loved ones. Best regards, Al & Judy in Oregon.

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  20. A doctor said that a tic caused ALS— treated himself and disease stopped—do you have more information about this idea of Lyme disease causing ALS –??—Lou Gehrig lived in Lyme, Conn.

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  21. I have als too I’ve had it about six years an I’d like to ask you a few questions you can contact me thru email… thanx

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  22. Thank you Rob for all you are doing to further the cause in fighting the ALS disease. My husband was diagnosed in July 2014. He is doing pretty good however He is now on a ventilator 24/7 with a trach and has a feeding tube but he is still mobile and we thank the Lord each day for what he can still do. If you have any “outside of the box” suggestions to slow the progression, we are always interested to hear them. We have done many and don’t find a lot of time to research for more.

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  23. Rob, thank you for all you’re doing for ALS. My mother died of it in 2012. Peter Frates has been one of my heroes in raising awareness and money for ALS. People like you are integral to finding a cure for this terrible disease. God bless you and your family.

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  24. I was diagnosed with ALS (amyotrophic lateral sclerosis) 15 months ago. At that time riluzole was prescribed. I found I could not tolerate it. did very little to help me. The medical team did even less. My decline was rapid and devastating. The psychological support from the medical centre was non-existent and if it were not for the sensitive care and attention of my primary physician, I would have died. There has been little if any progress in finding a cure or reliable treatment. My ALS got significantly worse and unbearable because of my difficulty catching breath. Last year, i started on a natural ALS Herbal therapy from Mbeki Herbal Clinic, i read a lot of positive reviews from patients who used the treatment and i immediately started on it. I had great relief with this herbal treatment. I am doing very much better now, no case of shortness of breath or difficulty swallowing,, my ALS condition is totally reversed. Visit Mbeki Herbal Clinic website ww w. mbekiherbalclinic. com. This treatment is a miracle!!

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