‘Never Say Invisible’: One Family's Perspective on Living with ALS

The Schreiber Family: Jeremy (left), Fred (center), Ronnye (right)

For tech junkies and suburban commuters, a future with self-driving cars is a fun but fleeting thought on long trips and at stoplights. For people with ALS, also known as PALS, a future with self-driving cars is a world with one less limitation than there is today.

While self-driving cars would be nice, PALS like 40-year-old Jeremy Schreiber understand that advancement in mobility technology is just one bullet point on a long list of needs.

“We need technology in our homes and in our medicine,” Schreiber said. “Smart home technology that makes adjustments to our life-saving equipment the moment our vitals change, self-driving cars that accommodate our self-driving wheelchairs, drug repurposing, disease on a chip, and stem cells. All these things hold promise for a cure, but this isn’t enough.”

Less than three years ago, Schreiber was an accomplished sales professional with a resume that included stints at several Fortune 500 companies. He was an avid traveler, got big air on his snowboard and chased adrenaline to the highest of heights (literally) as a frequent rock climber.

However, his ALS diagnosis in January 2018 halted his career and hobbies, immeasurably and permanently altering Schreiber’s life and that of his parents, Ronnye and Fred Schreiber. A longtime chemist, Fred stepped away from his own job in favor of retirement when Jeremy was diagnosed. He and Ronnye, CEO of an event production company, quickly recognized the increased role they would soon play in Jeremy’s imminent battle with the disease.

“We had [Jeremy] move back home with us and realized immediately that our house was not designed for him to be able to get around,” Fred said. “We had tremendous support from an ADA-knowledgeable architect, and Jeremy’s friends set up a GoFundMe site which helped with the addition of a wing that has a lift and a ceiling track to carry him to the bathroom and bedroom.”

Those renovations ensured that everything Jeremy needed was located on one floor of the Schreiber family home. Despite the heartache of seeing their son diagnosed with ALS, the stress of remodeling their home to accommodate his needs and the upheaval caused by his disease’s progression, Fred and Ronnye remain positive about what has unfolded in the time since.

“We are sorry that his ‘real’ life had to come to a halt with ALS, but we are thrilled to be the ones to take care of him,” Ronnye added. “Some would think that our lives were affected negatively, but we love having our family together under one roof.”

Jeremy Schreiber with girlfriend, Melissa Simpson

It has now been 60 years since famed baseball player Lou Gehrig — the man most publicly associated with the disease — received his diagnosis, and there are still only a few drugs used to treat ALS. As Jeremy told Target ALS, for him, none of these drugs have had much success in slowing the disease.

Though it’s certainly not a replacement for a cure, what has helped Jeremy and his parents is the assistance received from ALS patient and caregiver associations and industry groups.

“Support groups for both PALS and CALS (caregivers) provided comfort and helped us feel that we are not alone in this journey,” Fred said. “Since the diagnosis, we’ve learned so much from others about how to keep Jeremy comfortable and as healthy as possible.”

In addition to inspirational messages of hope, the Schreibers have also benefited from “loan closets” that supply patients like Jeremy with durable medical equipment that can include ramps, wheelchairs, formula and other essentials.

Recently, the COVID-19 pandemic has amplified some of the challenges experienced by PALS and their caregivers. Fred and Ronnye said that they’ve tried to remain active by taking turns exercising outside, though they are avoiding visiting stores like the supermarket — a task assumed by Jeremy’s friends. Because PALS have weakened breathing muscles, they can struggle with fighting off lung infections, which makes them particularly vulnerable to this virus.

It’s taken some time, but Fred and Ronnye have now settled into a routine that works well and feels comfortable to them. Ultimately, they said they would love to see an environment where newly diagnosed patients and their caregivers can be paired with a mentor to help guide them through those first few mentally and physically grueling months.

As for Jeremy, ALS may have robbed him of the chance to rack up sales awards and scale summits, but he has refocused his energies on writing, educating and encouraging. He hopes to have a book, “Invisible Nation,” published by the year’s end, and he blogs about his life, health and wellness at www.neversayinvisible.com

He also had a message that he asked Target ALS to spread far and wide: “We, the PALS and CALS of the world, challenge you to be brave and bold, innovate and collaborate, advocate for change, and be our heroes. Only then can we start living with the disease and stop dying from it.”

Challenge accepted, Jeremy. It’s for incredible PALS like you that we continue our work everyday and will do so until we realize a world in which no one dies of ALS. 

 

 

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