The heartaches, hardships and hopes of 2 ALS caregivers
Two women share the challenges of caring for their husbands with ALS
April 23, 2021
Nadia Sethi and Cali Orsulak live hundreds of miles apart but share the same journey, the same heartache and the same hope – that someday, the disease ALS (amyotrophic lateral sclerosis) will be a thing of the past.
“When someone you love is diagnosed with ALS, your world completely changes forever,” says Nadia.
“Your dreams, your aspirations, all the things you’ve worked for – ALS takes them away,” adds Cali.
Nadia’s husband and Cali’s husband were both diagnosed with ALS in 2019. They didn’t know what was ahead for their families. They only knew they had to fight for the partners they loved.
A relentless disease
ALS is a neurological (nervous system) disease that destroys the nerve cells that control muscle movement. In the U.S. alone, ALS affects between 14,000-15,000 people. Most patients who develop the disease are above 50 years but it sometimes affects much younger people.
The disease gets worse over time, starting with symptoms such as muscle weakness, stiffness or slurred speech. Over time, paralysis sets in and the patient loses control of vital functions such as swallowing and breathing.
“Every function that’s lost by a person with ALS becomes a gain of function for the caregiver. I was my husband’s hands. I was his voice. I was his everything.”
A difficult journey begins
Nadia first knew something was wrong when her husband Sundeep, a doctor and researcher, was playing a game on his phone and couldn’t get his thumb to move. Cali’s husband Kenny, a sport medicine doctor, was talking to a friend when he began to slur his words.
As more symptoms appeared, and after many tests and visits with different health care professionals, both men were diagnosed with ALS.
“My husband was completely healthy, athletic, functional and amazing,” says Cali. “The thought that it could go from that to something as devasting as a terminal illness didn’t cross my mind.”
“We went into fight mode, desperately looking for anything that could help,” says Nadia.
‘Every second counts’
ALS caregivers often talk about the “ALS clock,” which Cali says “moves much faster than the human clock. Every second counts.” On average, a person with ALS lives 2-5 years after diagnosis.
“You wake up every day, and it’s like having a bad nightmare,” says Nadia. “There’s a constant reminder in the back of your head that things aren’t right, and you don’t know what awful change is coming next.”
Nadia searched for information on clinical trials, which are research studies designed to learn how our bodies respond to medicines or other treatments, and ways to connect with other caregivers and ALS patients. “I wanted to make a difference for my husband. And I wanted to find other people who were with us on this terrible journey.”
Nadia found and became close friends with Cali through I AM ALS, a patient-led online community that provides support and resources to ALS patients, caregivers and loved ones.
“When you come into the I AM ALS group, you see patients with limited time, and you’re just amazed by all the energy and what they’re doing,” says Cali. “Being part of it is my therapy. It keeps me going and makes me feel my family is not alone in this.”
Kenny and Cali at a hockey game
Sundeep and Nadia in Chicago
The life of a caregiver
Nadia says caregiving is “the most rewarding thing I’ve ever done – and the hardest.” As her husband’s illness advanced, caring for him became all-consuming.
“I’m a dentist by profession. There were days when my husband’s teeth would get brushed and mine wouldn’t. There were days when he got his meals in, and I didn’t. I did everything I could to make sure he got through every single day.”
In November 2020, much sooner than she ever imagined, Nadia had to say goodbye to her husband when he died from ALS at age 46. “I don’t think I’ll ever be the same person again. I don’t think I can ever look at illness the same way.”
Cali’s husband continues to fight a rarer type of ALS. While most patients have early symptoms that affect their arms and legs, Kenny’s disease attacks the muscles in his upper body such as his tongue. He can no longer speak or eat on his own.
Cali says caregivers “carry a lot of guilt,” questioning whether they are doing enough for the patient or doing too much. “People always say to me, ‘You need to take time for yourself.’ If only it was that easy.”
She feeds her husband through a feeding tube and helps him with his breathing exercises.
“As a caregiver, you lose your freedom. But you don’t have time to mourn the loss. You have to keep going.”
Video: Watch the Journey of ALS Caregivers
A ray of hope
Nadia continues to raise awareness of ALS and support patients and caregivers. “The only thing that makes me feel a little better is knowing that I’m trying to make a difference,” she says.
For Cali, being part of a group of like-minded people gives her hope. “We see a lot of treatments in clinical trials that look promising. Will they be available in time for my husband? That remains to be seen. But when I think about all the people who are working on this, I’m inspired. Maybe there will come a day that this disease is in the past.”
The fight continues
Although scientists now understand some of the genetic mutations that cause ALS, there’s still much to learn.
Our company is currently engaged in a 5-year collaboration with scientists at Crick in the U.K. to better understand the causes of nervous system diseases like ALS and to better understand the pathways that may lead to treatments.
Companies around the world are also conducting and enrolling patients into clinical trials related to ALS. You should speak to your doctor for more information if you or a loved one you know is interested in a clinical trial for ALS.