Teaneck—Last year, when Dassi Zeidel signed up as her family’s team captain for the ALS Association’s Walk to Defeat ALS, she set a goal to raise $2,500. But she didn’t quite account for the outpouring of love and support her family received. Over the 41 years her parents, Itch and Marilyn, have lived in the Beth Aaron and greater Teaneck community, their friends have become as close as family.
Team Zeidel surpassed its goal numerous times over; it raised an impressive $19,500. Not only that, but more than 100 people showed up to support the team on the day of the walk. Zeidel hopes for even more people to attend the walk this year, which is set for June 8, and spoke to JLBC to increase awareness about ALS, communicate plans for this coming year’s walk, and share her family’s very personal reasons for raising funds for this special organization.
Irving “Itch” Zeidel, Dassi’s father, was diagnosed with ALS (amyotrophic lateral sclerosis, also referred to as Lou Gehrig’s disease) on June 25, 2012. “He was suffering from stiffness in his fingers and had trouble with his fine motor coordination. Then the pain/stiffness traveled up his arms and then it started in his legs. Over the course of less than two years he has gone from someone who was fully physically functioning—he could walk, sit, stand, eat, drive, brush his teeth—to not being able to do any of those things,” Zeidel said.
This past January, Itch was hospitalized with bilateral pneumonia. It’s a miracle he survived, Zeidel said. He was in the hospital for a month at which time he had a tracheostomy tube inserted into his throat, which is now hooked up to a ventilator. These help him breathe, but he is now unable to speak. He communicates by mouthing words, while his family works tenaciously to improve their lip reading skills.
Itch also uses an eye gaze machine: “He uses his eyes to ‘type’ letters on a machine. Basically, looking at a letter causes it to appear on the screen. Letters become words and words become sentences. He then looks at a button called ‘speak’ and the words are spoken aloud. This is time-consuming and very tiring for him. But he is so driven to keep communicating with all of us. It’s a testimony to my dad that he works so hard to communicate, and that he is sometimes even still able to joke around with us. He’s always had a great sense of humor,” she said.
Before his illness, Itch was the kind of Zaidy who would build entire Lego cities with his grandchildren, and shared a special love of sports and the Yankees with his 10-year-old grandson. Zeidel said that even though he can’t communicate the way he used to, Itch’s grandchildren and other young family members are as attached to him as ever. He was always active in their lives, and used to spend significant time each week with his grandchildren in Monsey and Far Rockaway. Now, they all come over to the Zeidel house in Teaneck and often sit in his room with him to play games or climb into his bed to give him hugs and kisses or watch TV, just so they can be near him. The kids control the remote when they’re with him, Itch jokes.
“And all the kids who visit draw pictures for him, which he proudly displays on the wall in front of his bed. The children bring him so much joy; he lives for them. But it’s so hard that he can’t see them as often as he used to and he can’t interact with them in the same way,” Zeidel said.
A progressive, neurodegenerative, fatal disease, ALS slowly robs the body of its ability to walk, speak, swallow, and breathe. The life expectancy of an ALS patient averages two to five years from the time of diagnosis. According to research literature, every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose his battle against it. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
There is no known cure and there is currently no treatment for ALS, but there are drugs and procedures currently in clinical trial that have proven somewhat effective on certain patients. More information about the illness, including symptoms, genetic factors, and other details are available at http://www.alsa.org. Information on research and clinical trials are available at http://www.alsconsortium.org.
The Zeidel family has found resources and help, both physical and emotional, through the ALS Association. “We’ve met about eight or nine families who have been affected by ALS through our support group. These are people who we would normally never have come across, but this shared commonality has brought us together and has given us a connection that we don’t have with anyone else. They understand what we are going through like nobody else does,” she said.
Zeidel also mentioned how much her family has personally benefited from the ALS Association’s loan closet, because ALS, like many others, is an expensive disease. When a therapist recommends a piece of equipment, they contact the loan closet and if they have the item they loan it out for as long as it’s needed. “We’ve received many pieces of equipment from there, including a special lift that enables my father’s aides to get him from his bed to his wheelchair.” If not for that lift, he wouldn’t be able to leave the house, Zeidel said.
Zeidel added that in addition to locating appropriate medical equipment, her mother’s work to make sure her father has what he needs and wants is unending. “If not for my mom’s tireless efforts and advocacy on his behalf, my dad’s quality of life would be nowhere near what it is now,” Zeidel said.
Meeting monthly for the support group and at other ALS Association-sponsored events, participants and their families and friends culminate each year with the Walk to Defeat ALS, where families form teams and “compete” against each other to raise money to fund ALS medical research.
“All the teams involved in the walk are affected by this terrible disease, so as much as we want to win and be the number one team and raise the most money, the competition is really more of a camaraderie because we all want the same thing: To raise money to help all of our families, and most of all to fund the research it takes to find a cure,” Zeidel said.
The walk is held in the beautiful Saddle River County Park and also hosts activities for kids. Last year, families spent the day there enjoying the weather, picnicking, and spending time with one another.
“Our goal is to raise $20,000 for this year. And when I mentioned that to Dad, he mouthed, “Let’s do $25,000.” These days my mom always says the goal is to make Dad happy, and whatever he wants, he gets. We’d love to see this goal reached for him,” she said.
In addition to Dassi, Team Zeidel is comprised of Itch’s wife (chief caretaker and tireless advocate); son Duvie and his wife Nava, who live in Far Rockaway with their three boys; daughter Yehudit and her husband Avi Gelbein, who live in Monsey with their five children; and cousins in Bergenfield, Dvora and Dov Brandstatter, and their four children. Also on the team are numerous friends of the family.
To walk with Team Zeidel on June 8, and especially to donate generously, go to:
http://web.alsa.org/site/TR/Walks/GreaterNewYork?team_id=270895&pg=team&fr_id=10151. You can see Itch’s page here: http://webgny.alsa.org/goto/irvzeidel.
By Elizabeth Kratz
