Friends and Family to Honor Ron Lobo at Strike Out ALS Event

Ron Lobo has good days and bad days. On his good days, life is relatively calm. On his bad days, stress and sadness set in.

On February 4, 2019, Ron was diagnosed with ALS, a terminal progressive disease that causes muscle weakness, difficulty speaking and swallowing and, generally, complete paralysis. While some symptoms are treatable, there is no known prevention or cure for ALS.

The trouble began when Ron was struggling to walk. A physician quickly referred to a neurologist at the Les Turner ALS Center at Northwestern Medicine. Just weeks after his diagnosis, the progressive weakening of his diaphragm muscles due to his ALS made breathing difficult, and Ron was admitted to the hospital – where he stayed for nearly three weeks. He was put on a respirator to help him breathe and had a feeding tube inserted to help supplement his nutrition, as he’d lost a fair amount of weight.

“The daily routine of caring for my dad involves physical adjustments, breathing treatments, administering medications, preparing meals and using the feeding tube, and more,” explained Ron’s son Eric, who serves as a primary caregiver alongside his mother. “We’ve had to quickly learn about ALS and how to use a variety of machines and equipment to ensure my dad’s wellbeing and comfort. On top of learning the caregiving duties, we’ve had to process and cope with the changes in our lives, but despite these challenges, the experience has brought out the best version of ourselves. ”

The experience has shown the Lobos that they have an incredibly loyal and kind support system, and that Ron means so much to so many people. In the five short months since Ron’s diagnosis, the family has received food, well wishes, cards, letters, phone calls, visits and countless hours of help from loved ones.

“He never complains,” said Eric. “In fact, he asks about others and genuinely wants to hear about their lives. He has always been a focused, caring and driven person, and those traits shine through despite this disease.”

Today, Ron is still able to speak, but has lost the use of his arms and legs, needs a breathing mask nearly 24 hours a day and relies on a wheelchair for mobility. The family has turned to the Les Turner ALS Foundation at every step of their journey. A nurse and social worker visit the Lobo home in Wilmette and the family has utilized the Foundation’s medical equipment bank.

As a way to support the Les Turner ALS Foundation, Eric and his brother Kevin have recruited nearly 40 people to run or walk in Ron’s honor at the Strike Out ALS 5k and 1 Mile Run, Walk & Roll at Guaranteed Rate Field on Saturday, July 13.

Friends and relatives eagerly joined their team and donated to the cause, and within the first eight days of fundraising for the event, they collected more than $5,000 for the Les Turner ALS Foundation. Today, the team has collectively raised more than $7,500.

For more information about ALS and the Les Turner ALS Foundation, visit www.lesturnerals.org. To register for the Strike Out ALS event, visit www.strikeoutals5k.org.