‘A do-it-yourself disease’

In early 2014, just shy of his 12th birthday, Eitan David Jacobi of Teaneck told his parents he was having trouble raising his arms. It was particularly hard for him to shoot basketballs.

This was a first for the youngster, said his mother, Rabbi Lori Forman-Jacobi, who described her son as an active, funny, and very social kid.

In fact, she said, he had spent the previous summer as a camper at Ramah Nyack. And when he fell off a horse in early November, “we told him to get back on.” Usually that’s good advice. But Eitan did not have the strength to stay on the horse.

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“We didn’t have a clue,” Rabbi Forman-Jacobi, a past vice-principal of the Bergen County High School of Jewish Studies. “It took us until Thanksgiving to get to a neurologist.” By that time, Eitan was “unable to reach to get to the microwave or to open cabinets.”

His parents thought Eitan might have a condition known as FMA, focal muscular atrophy. “We thought we’d be tested to see if we carried it,” she said, noting that with FMA, known to be genetic, muscle deterioration is very slow. Since her husband, Simcha Jacobi, has a cousin with this condition, it was worth a try.

Still, she said, “it became clear that the progression of Eitan’s disease was too fast. He couldn’t walk by early January.”

If Eitan’s condition stumped his parents, it also confounded his doctors. In late March, the Mayo Clinic told the parents that the boy had a motor neuron disease. “They couldn’t call it ALS,” Rabbi Forman-Jacobi said. “There was no genetic proof, and they hadn’t seen it in a 12-year-old.”

ALS, or amyotrophic laterals sclerosis — often called Lou Gehrig’s Disease — is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord.

“It’s a very complex disease,” Rabbi Forman-Jacobi said. “It’s not just one thing. He had the rarest of all the mutations, a sporadic mutation, not hereditary. It affects the very youngest and has the most severe kind of progression.”

Eitan died in June 2014, leaving his parents and his sister, Maya, 15, to “miss him every day,” his mother said. He was 12 years and 9 months old. In his memory, and to call attention to the devastating disease that claimed his life, the family will take part in this year’s Walk to Defeat ALS. Scheduled for May 31, two weeks before Eitan’s first yahrzeit, the 3-mile walk will begin at Saddle River County Park beginning at 10:30 a.m.

“We have formed Team Eitan to walk in his memory,” Rabbi Forman-Jacobi said, noting that the ALS Association sponsors five walks in the spring. “The goal is to raise $325,000 for the May 31 walk,” she said. “We’ve got quite a way to go,” she added.

Everyone is welcome to contribute to the walk. “They can support any of the teams,” she said, suggesting that would-be contributors and walkers go to walktodefeatals.org.

“It’s as much about awareness as it is to raise funds,” she said, pointing out that ALS has been very much in the news as a result of last summer’s Ice Bucket Challenge, the viral phenomenon that invited people to pour a bucket of ice water over their heads and then challenge others to do the same — or make a donation to fight ALS within 24 hours. (Most people both contributed money and videoed themselves dousing themselves.)

“It raised millions of dollars,” Rabbi Forman-Jacobi said. “That’s great, but we can’t forget that millions of people are still suffering from ALS, and there is still no cure.”

As a rule, ALS affects people older than Eitan.

Gilad Tsabari of Englewood Cliffs was 54 when he started having problems with his lower back and his right leg, his wife, Debbie, said. “By the time we took him to a neurologist, his condition had worsened, but they still ran every test under the sun to rule out everything else. ALS doesn’t have a simple test that one can take. Instead it is a process of elimination.” No genetic link was found.

According to Debbie Tsabari, Gilad’s disease has necessitated changes in the family dynamic. “Anyone who says that it doesn’t affect the life of the family would be lying,” she said, noting that her 20-year-old son and 25-year-old daughter “understand and continue to hope for a cure.”

In the meantime, the Tsabaris had to change the physical structure of their home.

“We went through complete renovations of our home, as Gili is now in a wheelchair and doesn’t have the capability of getting around our home without ramps,” Ms. Tsabari said.

It is also expensive.

“We have full-time help, because this year Gili lost the use of his arms along with his legs,” she said. “I think that most ALS patients find that it is very costly to live with ALS. Medicare and private health insurance will not cover any home care, so basically you are forced to go through all your savings to qualify for Medicaid, and then you can have limited home care, which is substandard to the care you get when you pay privately.”

Ms. Tsabari said the ALS Association and the Muscular Dystrophy Association both offer help with support group meetings and lender closets, “where you can borrow medical equipment for as long as you need it. I have found that this has come in handy on many occasions.”

Walks like the one scheduled for May 31 also are important.

“The ALS Association not only raises monies for research and equipment but it brings communities together and helps spread the word that ALS is a serious disease and we want to see a cure,” Ms. Tsabari said.

She also feels strongly that people in the community should not forget people who are suffering from this condition. “ALS patients are usually stuck at home most of the day, and if you are truly a friend, you need to make time in your week to visit,” she said. “Those visits mean the world to ALS patients. Keeping the ALS patient part of the family and friends is very important.

“I have a group of five families that we are very close with. When Gili was diagnosed with ALS in 2012, he could still get around and we would be able to attend events at our friends’ homes.” But now that he is in a wheelchair, “my friends insist that we hold all occasions at my home so that Gili remains part of the extended family celebrations.

“All I can say is don’t stay away.”

Irving Zeidel is a longtime Teaneck resident. His daughter, Dassi Zeidel, who captained a successful walk for her father last year, will be walking again on May 31.

“At some point during 2011, my father started noticing that he was having trouble using his fingers to unlock doors, button his shirts,” Ms. Zeidel said. “He also had what seemed like nerve pain in one of his arms. He saw his orthopedist, who recommended surgery.”

Still, when he was recovering from surgery — “which proved to be completely unnecessary” — he noticed that the muscle weakness was getting worse, and it was spreading.

Finally, a neurologist specializing in ALS diagnosed him on June 25, 2012.

Irving Zeidel and his grandchildren

“It took several months and visits to several doctors before we got this devastating diagnosis,” Ms. Zeidel said. “ALS is the kind of diagnosis where you have to rule out everything else before settling on ALS. My father was 64 at the time of diagnosis; he is now 67.”

Moving from a cane to a walker to a motorized wheelchair with spine and neck support, Irving Zeidel now is paralyzed from the neck down. He breathes through a ventilator. Unable to speak, he communicates through an eye-gaze machine, “which is exactly what it sounds like,” his daughter said. “His eyes focus on a letter on a screen. Those letters turn into words, and the words turn into sentences. This can be quite time-consuming and tiring.”

Mr. Zeidel also is able to use the machine to text, check email, listen to music, and browse the web. “There is also a siddur and other Hebrew and Jewish books and materials on it; you can customize the machine by uploading other materials and programs,” his daughter said.

“People in my parent’s shul, Congregation Beth Aaron, and in the community have been very supportive,” she said. “People come by to visit, to learn with my dad, to read to him on a regular basis. In the early days, he was still able to work part time and go to shul, but now he is confined to home most of the time.

“The Walk to Defeat ALS and supporting the ALS Association is so important because while this disease has been ravaging people and families for so many years, there is still no cure,” she continued. “The ALS Association raises money to fund research for a cure. Supporting the walk and the association also raises awareness. All of these things will lead to a cure.”

She added that since her father’s diagnosis, “things have been very tough for the family—both for my mother, us children —there are three of us — and the 10 grandchildren.

“My father was a regular guy, someone who was able to play with the kids, work, and go about his everyday life, but now he can’t do anything for himself anymore. In the beginning, we did not tell the little kids the name of the disease that their grandfather has, but they spend a lot of time with him and they’ve seen the progression. They’ve also become very involved in the walk. This is our third year participating in the Walk to Defeat ALS.”

Last year, Ms. Zeidel’s team was “the #1 team in Saddle Brook, raising over $35,000, and the kids come every year. My 6-year-old niece Tamar will say, ‘I really wish we could find a cure for ALS.’”

The children have adapted to their grandfather being sick in bed, lying next to him, watching TV with him, telling him stories, she added. “They’ll help the aides do things like take his blood pressure or his temperature. They make pictures to hang up on his walls and call him to tell him things that happened in school. In many ways, they are much more at ease with him than many adults are.”

She pointed out that while there are three major hospitals in this area with ALS clinics, “there is not a lot that doctors can do for ALS patients. There are ways that occupational and physical therapists, speech therapists, and respiratory therapists can help with the techniques, but at a certain point there is nothing that can be done.

“In some ways, ALS feels like a do-it-yourself disease. Each patient’s progression and story is different. People feel the symptoms in different places. While ALS is known to be a painless disease, we, and so many other people we know, have found this not to be true.

“The walk program is such a wonderful thing because in addition to raising awareness about ALS, and raising money for research, we belong to a support group funded by the ALS Association and have met many people with ALS and their families who share our struggles and our journey,” she said. “It’s a very tough disease to go through both as a person with the disease and as a family member. Having other people who share our experiences can really help ease the pain. It’s nice to walk with these people every year to fight and raise money for a cure.”

According to Debra Orenstein, the rabbi of Congregation B’nai Israel in Emerson, “researchers believe that there is some genetic component to ALS, but it may also be activated or aggravated by environmental conditions.” Interestingly, Rabbi Orenstein said, ALS occurs twice as often in military veterans as in the general population, no matter when or where veterans served and no matter whether they saw combat.

She noted that “only two conditions are fully covered by the Veterans’ Administration: Agent Orange poisoning and ALS. Determining the trigger or toxin that veterans share is vital to understanding the disease process. ALS also strikes people who are fit and athletic more than it does the general population.”

In 2013, Rabbi Orenstein lost her father, Rabbi Jehiel Orenstein, who led Congregation Beth El in South Orange for more than 40 years, to ALS.

“My father was a veteran,” she said. “He played tennis three times each week. He was ‘the healthy one’ in our family. He was hospitalized only once in his life — to repair a rotator cuff injury he sustained when he dove to catch a falling Torah.”

Rabbi Orenstein said a cure for ALS not only would help those people afflicted with it, but also “is likely to illuminate other issues and diseases. How can military training, medical care, and living conditions keep our troops healthy? What other motor-neuron conditions might be alleviated? To arrive at a cure, we will need to gain a greater understanding of the brain and the body.

“My father was a gifted rabbi, but the greatest Torah he taught was after he had ALS, as he gradually lost his ability to speak,” she said. “He demonstrated the value of the soul. He showed in the most heartbreaking, brave way the inherent dignity of every human being. He had never judged anyone else by superficialities, and he didn’t judge himself that way either. It didn’t matter that he couldn’t move, care for any personal needs, scratch an itch, or speak. He was neither embarrassed nor embittered by that. He still found ways to enjoy life and especially the people around him.”

Her father scheduled visitors and regular massages, she said. He listened to books on tape. “He elected, at every juncture, to undergo surgeries and use devices that would extend his life. Even when he had to communicate only by spelling out words laboriously… he made jokes, he taught Torah.”

“Also, increasingly, he withdrew into a rich inner life. He lay quietly, looked at nature out the window, thought, prayed. I would in no way impugn or question anyone who refuses intervention. But my dad found quality of life — holiness of life — in any life at all. That was his gift — and his lesson.”