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He’s Truly Living with ALS, Instead of Dying From It

The countdown is on for Alan Alderman and the rest of the ROW4ALS team, as they prepare to depart for San Sebastian in La Gomera, Canary Islands, Spain in just under three weeks. This is the launch point for the adventure of a lifetime when the five-man crew takes on the 3,000 mile Talisker Whisky Atlantic Challenge, aiming to row to their final destination on the island of Antigua in 50 days or less.

An extreme sporting event for any racer, this row will be uniquely challenging for Alan, as he plans to conquer this daunting journey in the midst of his decades-long battle with ALS.

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Dr. Mark Bromberg, chief of the Diagnostic & Clinical Neurology Division and director of the Motor Neuron Disease/ALS clinic for University of Utah Health, has worked with Alan for over 17 years as Alan has triumphed in building a successful life around his diagnosis.

When I first learned of Alan’s goal, I thought he was crazy,” laughs Dr. Bromberg. “Anyone undertaking that trip is crazy, but when you add in Alan’s limitations—all I can say is crazy.

Most patients with ALS experience a more rapid physical decline, and lack the stability necessary for this type of training, so Dr. Bromberg and Alan’s treatment team are unsure of the physical implications this type of exertion will have on Alan’s condition. While they realize the adventure could instigate a physical decline, Alan and his medical team agree the mental benefit outweighs any potential drawbacks.

“This is uncharted territory,” explains Dr. Bromberg. “Because Alan is the first person with ALS to even attempt this journey, there’s no data to support or discourage his ambitions.”

Alan has ramped up his visits with Dr. Bromberg as training progresses, and by all accounts has continued to exceed expectations—even his own.

ALS robs people of their ability to move as the disease progresses, and so far, I’ve been an exception to this norm,” ponders Alan. “Successfully rowing across the ocean will be a miracle, but no more incredible than the fact that I’m alive at all.

“Even though we’re approaching my training, nutrition, and rowing schedule onboard the boat in an informed, methodical way, we don’t know how—or if—my body will fully recover,” continues Alan. “People ask if it’s worth the risk. ALS has shown me there are no guarantees in life, so why NOT take the risk?”

Ordinary individuals who decide to take on this kind of challenge must meet a rigorous set of physical and administrative guidelines. According to the official Talisker Whisky Atlantic Challenge website, teams row over 1.5 million oar strokes during the course of the race. Individual rowers keep a constant 24-hour rotation with their teammates, alternating 2-hour shifts of rowing and sleeping.

So, could you do it? Rowers up to the task must:

  • Be physically fit, obtaining a full physical exam and sign off from a doctor, as well as a check for dental health. In Alan’s case, his entire treatment team must clear him for the row.
  • Spend at least 72 hours rowing the boat they will use in the race. 24 of these hours must be spent in darkness, to simulate daily life on board.
  • Train together as a team. This was one of the first qualifications met for these rowers, having logged numerous rows with varying members of the team, and a full team row over Labor Day weekend.
  • Drill and rehearse on board procedures, be familiar and comfortable operating all equipment on board, and become knowledgeable in basic repair and equipment maintenance tasks. Team ROW4ALS has already knocked this one out of the park, too. Each rower knows the boat like the back of their collective hand, and was able to complete procedural training during their full team row in August.
  • Fully accept and understand the personal, physical, and operational risks of the challenge, as well as actively educate themselves on preparation, prevention, and action should issues occur. These risks can include everything from mental stability, team discord, onboard technical emergencies, extreme weather, sickness, dehydration, and more. Alan and the crew acknowledge this is one of the more difficult tasks, in part because of the vast scope, but also due in large part to the mystery of what lies before them.

Like the effects of this race on Alan’s treatment and prognosis, much of the journey is simply unknown.

Dr. Bromberg declines making any recommendations for average folks interested in this journey, but offers his sincerest compliments and hope for the crew, and especially Alan, who has become a friend as well as a patient.

This journey is not for everyone,” Dr. Bromberg comments, “but I can’t think of a better example of chasing your dreams than this. Alan is truly living with ALS, instead of dying from it.

As the rowers get ready to depart on the lead leg of their journey in early December, they’ll spend the next few precious weeks in moderate physical training, assessing last-minute needs, continuing fundraising efforts, and buckling down to mentally prepare for the world’s toughest row. Follow these links to learn more about these rowers, the grueling journey ahead, or supporting the team.