Irving "Irv" Dorenfeld, Woodland Hills, California
Brave. Selfless. Resilient. These terms are fitting in describing Irving “Irv” Dorenfeld, who is battling amyotrophic lateral sclerosis (ALS). More than 50 years ago, Dorenfeld fought for his country in Korea. Today, he fights ALS. Nobody would label Dorenfeld a victim though, especially given the circumstances the ex-Marine has lived through with this disease. He is a fighter through and through.
Irv Dorenfeld with family members in 2011
During ALS Awareness Month The ALS Association’s Golden West Chapter is recognizing Dorenfeld and his wife and caregiver Shirley, who goes by the nickname “Cookie,” for the annual “ALS Across America” campaign. This national campaign pays tribute to people with ALS, otherwise known as Lou Gehrig’s Disease, and their caregivers as role models. These individuals inspire The Association and the ALS community as they make a positive difference by spreading ALS awareness and by living their lives to the fullest.
Dorenfeld and Cookie were married on September 4, 1955. They had three children, son David and two daughters, Debbie and Robyn. They ran a family printing business for over 30 years in the Los Angeles area. “Our Dad has always been our hero!” said Robyn Dorenfeld, Irv and Cookie’s youngest daughter. ‘From stories of his time in the Marine Corps and his years in Korea to starting his own business from scratch, his work ethic and never give up attitude inspired me.” “My Dad and I shared a love for baseball, especially the Los Angeles and Brooklyn Dodgers, and we would watch the games like we were the managers,” said David Dorenfeld. “We also shared a passion for swimming. We would compete against each other with how many laps we could each do on a daily basis in our family swimming pool.”
Dorenfeld had symptoms for years before he was finally diagnosed with ALS by Dr. Michael Graves in May 2005 at UCLA, when he was 74 years old. He agreed to a feeding tube in August 2010. In May 2011, he was rushed to the emergency room for pulmonary edema and congestive heart failure. He was very close to death. Doctors kept Dorenfeld in the intensive care unit for nine days, repeatedly attempting to remove him from life support with no success. These physicians believed Dorenfeld’s body could not survive and spoke with his family about quality of life issues. Because Dorenfeld wanted to continue on, he agreed to a tracheotomy and a ventilator.
Dorenfeld was transferred from the hospital to an acute care center to recover and rehabilitate. It was a terrible struggle, and he developed bed sores, infections and had an extreme lack of energy. In order to keep him safe from additional infections, the doctors had to close the speaking valve of his tracheostomy tube. “That was the last time that I ever heard his voice” said Cookie. “That was awfully hard.” Force of will—along with the assistance of an incredible nurse practitioner—allowed Dorenfeld to respond positively to physical therapy. Ninety-five days later, he was finally able to come home on August 27, 2011. "Irving Dorenfeld’s love for his family and the desire to live have always been greater than ALS," said Gina Kogan, MSW, regional care manager at the chapter.
While at the rehab center, Dorenfeld was having problems with his vision. An examination showed that due to the amount of steroids that he had taken for his breathing problems, he had developed serious cataracts and was legally blind. Cookie made it her mission to get him some help, which finally came from an incredible eye surgeon, David Azuiss. M.D. Against all odds— his ALS, breathing and anesthesia concerns, and a strong difference of opinion with his peers, Dr. Azuiss pressed forward to be able to perform the surgery. “I don’t believe that a man who cannot talk, walk, eat, or move should also be blind,” Dr. Azuiss said. “Especially, when I could potentially help to change that.” Dorenfeld endured two stressful cataract surgery procedures in November and December 2011 and emerged with 20/20 vision. “He was able to read a newspaper, watch TV, went to the movies, and was able to see his family again,” Cookie said. “It was an amazing thing.”
“After this experience, our Dad has truly demonstrated a ‘SUPER HERO’ status,” said Debbie Clousner, Irv and Cookie’s eldest daughter. “This man loves life. He is simply incredible.” “No man can define the word courageous like Irv can,” said his granddaughter, Corey Clousner. “No matter how horrible this disease is, my grandfather will always be the man that put me on his shoulders and ran into the ocean, and NO ONE or DISEASE can take that away from me!" Cookie echoes her granddaughter’s sentiments in how her husband cares for those closest to him. “Irv’s will to live and his desire to not leave me is why he is here today. He hangs his hat on everything beautiful. These doctors have added a year to his life. Through it all, he is seems to focus on small things. We have such love for each other. He has always put himself last. He loved to eat. When faced with dying or not eating, he chose to live.”
In dealing with Lou Gehrig’s Disease, the Dorenfeld family has relied on the chapter and its services. “We would never have survived without their help,” said Cookie. She credits the chapter’s “Ask the Experts” meetings for providing her with medical information about ALS. “The first Ask the Experts seminar gave me the tools that I would need to move down the road with ALS,” she said. The family is also very grateful for the veteran’s benefits that Dorenfeld receives. They understand the importance of promoting awareness of the impact of ALS on veterans and have submitted his story for The ALS Association’s Wall of Honor.
Golden West Chapter Marketing and Communication Director Jenica Lancy said the members of the Dorenfeld family are experts in raising ALS awareness and funds and will do so throughout May and the rest of 2012. One of the ways that they help is by creating donation cans at several local businesses for patrons to be able to donate their spare change. Cookie also writes an annual letter to friends and family to continue to share news about her husband’s battle with the disease. They have participated in both California and National ALS Advocacy efforts. The Dorenfelds are looking forward to participating in the Ventura/ Santa Barbara Walk to Defeat ALS, an event they have supported since 2005.
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