Guest Post: ‘ALS is What I Have, Not Who I Am’


By Alan Alderman

Note: In recognition of ALS Awareness Month, we’ve been sharing a lot of new stories about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure. This is the thirteenth profile in that series.

Bad things happen to good people every day. That’s just the nature of life. But it doesn’t mean we stop living and loving.

My ALS story officially started on a warm fall afternoon in September 2001. I had been having difficulties with speaking and swallowing for several months. After more than two months of seeing about a dozen different medical professionals, and having more tests than one can imagine, I sat in the small examination room of a local neurologist.

The doctor had just finished an EMG and asked if he could be excused for a minute. What was I to say? No?

He stepped out of the room. I sat alone on the examination table for what seemed like an eternity but was probably only a few minutes.

When he returned, he sat on the small rolling stool and rolled in front of me. He looked me in the eyes, placed his hands on my knees, and said, “Alan, I believe you have ALS.”

Like many people, I had heard about ALS. It had come up as a possibility during the appointments leading up to that day, but I knew little more than it was also called Lou Gehrig’s disease.

I asked the doctor what having ALS meant and he proceeded to tell me about the disorder. The main things I heard were there were no real effective treatments, there was no known cure, and that I had two to five years to live. What? How could that be?

I was only 40 years old, had three young children, was in a career that I loved, and had never had prior health conditions. I was shocked and angry and felt extremely helpless.

Getting to Here

Over the next week or so, I came to terms with the news -- if such a thing is possible. Then I determined that I had to do something because I wasn’t just going to lay down and die.

ALS might take my life, but it wouldn’t take it without a fight. ALS is what I have, not who I am!

I received confirmation of the original diagnosis about two months later from Dr. Mark Bromberg at The ALS Association Certified Treatment Center of Excellence at the University of Utah.

Then I started my ALS journey – a journey that’s been a challenge every step of the way. Like many of life’s challenges, though, it has come with wonderful and life-altering experiences.

Living With Purpose

ALS has changed how I participate in many activities I enjoy, especially those involving speed and fine motor skills, but I still enjoy all of them, even if it’s just as a spectator. Since my diagnosis, I have snow skied, skydived, and traveled the world.

An ALS diagnosis doesn’t have to mean an end to doing the things you enjoy; you just have to find new, creative ways to do them.

I try to live according to four basic pillars – faith, family, friends, and finding a cure for ALS. If I’m true to them then I have succeeded in life.

The first three pillars have been with me since I was very young. I’m lucky to have a close-knit family and great friends. The fourth pillar was added after my diagnosis.

There are so few ALS patients who are able to walk, talk, eat, breathe, drive, travel, and live independently 17 years after diagnosis. I have a rare, slowly progressing form of ALS and believe I have a God-given responsibility to do all I can to further the cause of ALS.

The way I show my gratitude for this great blessing is to serve – by fundraising for research and treatments, raising ALS awareness, advocating, and assisting my fellow ALS patients.

Rowing For A Cure

In 2017, I received an email from Tim Ryan, a dear friend since before my diagnosis and one of my biggest supporters. He said he had an idea for a fundraising effort.

He wanted to row across the Atlantic Ocean in the Talisker Whisky Atlantic Challenge and asked if I thought it was a viable fundraising thing and would be willing to help

I said I thought it’d be a great fundraising event and I’d help him under one condition – that I was in the boat rowing across the Atlantic, too.

Thus, the latest chapter of my story began.

The Row4ALS team is made up of five determined friends. We’re rowing in the Talisker Whisky Atlantic Challenge – considered “the world’s toughest row,” 3,000 miles across the Atlantic Ocean – to raise awareness and funds for research for ALS.

Our team goal is to help find a cure and rid the world of this horrible disease. My personal goal is to not only do that, but also to show that an ALS diagnosis isn’t the end. It’s the beginning of a journey that has challenges, but also many great blessings.

Training For The Great Row

Late last month, the ROW4ALS team took delivery of its custom 28-foot ocean rowing boat. We promptly towed it from Utah to southern Florida for what we hoped would be a training row from Fort Pierce, Fla., to Charleston, S.C. We learned that ocean rowing is very unpredictable and full of surprises.

Upon arriving in Fort Pierce, the winds were blowing onshore at 25-30 knots and the currents weren’t flowing as they normally do. Wind direction and speed, as well as currents, play a huge part when your vessel is powered only by the arms and backs of the men rowing it.

We waited two days for more favorable conditions, but they never happened. We looked at the Gulf Coast of Florida; the charts showed that conditions might be more favorable there. So, we loaded up and drove four hours to Hudson, Fla.

By the time we arrived, conditions had changed and were less favorable than they had seemed. The forecasts showed they’d continue to deteriorate, so we decided to launch and hoped we could get some good time on the water before they got too bad.

(During this time, one of our team members fell sick with ear and sinus infections and received doctor’s orders to stay on dry land.)

It took several hours of hard rowing to get 8-10 miles off shore. We rowed to Clearwater. It was a beautiful night with a full moon, and a great education, but in the end, we drove 90+ hours for about 20 hours of rowing.

Last weekend, we had more success. We rowed for close to 25 consecutive hours on Bear Lake in northern Utah. The “big event” is in six months. (Follow along here as we ROW4ALS.)

Doing Something About It

The ALS Association supports me in many ways – research, awareness, advocacy, and more. My ALS clinic, The University of Utah MND Clinic, is co-sponsored by The ALS Association. I also attend support groups sponsored by the Association. What the Association really does, though, is give me the help I need to continue living with ALS, and hope for a world without the disease.

The Association’s “Raise Your Voice” theme for ALS Awareness Month 2018 is appropriate for many reasons. We must raise our voices – even if we can no longer speak – to fight for a cure.

We didn’t choose to have ALS but we have a choice in what we do about it. We can be bitter, angry, and turn inward. (If we do, we’re dead already and just waiting for ALS to steal our last breath.) Or we can raise our voices and do something about it.

I’m not a doctor or scientist, so I’m not going to treat patients or discover a new treatment or cure in the lab. But I can do some things. I can raise funds! I can raise awareness! I can advocate! I can participate in clinical trials! I can enroll and participate in the National ALS Registry!

No one of us can do everything, but each of us can do something. Find the things you can do and then Raise Your Voice and do them.

If you were recently diagnosed with ALS, I’m sorry. I don’t think anyone should have this horrible disease. But it’s not the end. Keep living! Keep loving!

ALS doesn’t define us. How we LIVE with ALS will define us!

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