The Importance of Today: Living with ALS

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Mr. Alden Orput, 82, worked most of his career as the CEO of Orput Companies Inc., a third-generation family-owned real estate firm, founded in 1928. He is a savvy businessman, art collector, adventure seeker, family man, and for the past couple years, a man who is not defined by his disease, Amyotrophic Lateral Sclerosis (ALS), often referred to as Lou Gehrig’s Disease.


ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. As the motor neurons die, the ability of the brain to initiate and control muscle movement is lost; eventually, the ALS patient is left with total paralysis, inability to swallow, inability breathe, and ultimately multi-system / organ failure and death.

Living with No Regrets

A few years ago, Mr. Orput found himself having trouble keeping up during a hiking trip in New Zealand. When he returned from his trip, he was diagnosed with ALS. Unlike most ALS patients who are diagnosed between ages 40 and 70, Mr. Orput received his diagnosis much later in life.

“I feel lucky that I was diagnosed at 80,” says Mr. Orput. “The good news is that I’ve had a hell of a great life.”

The Gift of an Unexpected Bond

Alden__074Mr. Orput and Ibrahim Walusimbi, LPN, behave like old friends. They met last November when Ibraham oriented to Mr. Orput’s case. It was Mr. Orput’s first day home from the hospital following placement of his permanent tracheostomy tube and having become dependent on mechanical ventilation—and he was anxious.

“I’m here today because of Ibrahim,” Mr. Orput testifies. It was Ibrahim’s stoic and steady nature that calmed him after he was discharged home.

Mr. Orput and his family approached his diagnosis and the degenerative disease process by addressing the challenges straight on and by following Mr. Orput’s lead. He explains that it wasn’t easy integrating life-saving equipment and continuous nursing care into his personal everyday life.

Mr. Orput says, “It wasn’t an accident that we found Independence Plus.” The company’s patient-centered care and team approach led Mr. Orput and his family to choose Independence Plus as their healthcare provider at home. When he chose to extend his life by opting the mechanical ventilation route, he was clear he would continue living a full life—and we are privileged to be his witness.

Ibrahim says, “When we go out to lunch, Mr. Orput tells me the same jokes over and over again.” He continues, “I just keep listening. The jokes and stories are that good.”

Alden__136The two kindred spirits leave the house every day around noon to go out to one of their favorite lunch spots. Both men bring very different worlds of experience to their practice of being totally present in the here and now; their genuine respect and appreciation for one another is palpable.

A California Retreat

When Mr. Orput chose to extend his life by opting for mechanical ventilation, he made it clear that he would continue to live “his” full life—and that meant returning to one of his favorite, beautiful retreats, Santa Barbara, California. Mr. Orput asked Ibrahim to travel with him and his wife. Together they spent a full month in Santa Barbara.“In California, it was me, Ibrahim, and my damn vent,” recalls Mr. Orput.

Alden__078_closeupThe duo managed the treachery of airport security, a major feat given all of the equipment they were carrying, and then spent time at a private monastery on Mt. Calvary, soaked up the California sunshine, and thoroughly enjoyed their magnificent ocean view.

Mr. Orput continues, “When we arrived in California, all of our equipment was there and assembled. They had recreated exactly what we had at home in Illinois.” In addition to private duty nursing, Independence Plus also provides his respiratory home medical equipment.

In Mr. Orput’s words, “I don’t have a future. I have today.” Even after his diagnosis, Mr. Orput continues to make the most out of each and every day.

Mr. Orput currently lives with his wife of almost 60 years in their home in the western suburbs.

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