Locals gather to honor a friend, raise funds for ALS
Lou Rosen has led a rich, balanced life. He’s worked, loved, traveled, volunteered, written books, appreciated art and nature, raised three children, and has five grandchildren and two great grandchildren who all adore him. By any estimation, the 86-year-old has lived an enviable life.
Now though, the gregarious former Bonita High School principal (1969-1984) has been dealt a rough hand: in 2017, after noticing he was slurring his speech, he was diagnosed with Progressive Bulbar Palsy, a form of ALS.
He’s lost his speech, and can no longer eat, drink or swallow. He has half a tongue and one of his vocal chords is gone. He misses his wife’s gourmet cooking, and a nice cold one. Most of all though, he misses talking.
“I always loved going to a good movie then stopping for a beer afterward and discussing it,” Mr. Rosen said in an email interview. “Not being able to speak is very frustrating since it was the way I made my living for nearly fifty years.”
He was an educator and writer (he’s penned four books); a volunteer with Court Appointed Special Advocates, an organization that helps abused or neglected children find safe, healthy permanent homes; and was a member of the Santa Monica Jazz Choir and the Santa Monica College Choir. In retirement he traveled to Israel to work with Arab and Jewish educators. He was a docent at the Toledo Zoo in Ohio, and for 10 years, at the Getty Villa in Malibu. He earned a PhD in education from Claremont Graduate University in 1985.
And though he’s had to give most all of this up, he still finds light in the darkness.
“Having a family and lots of good friends makes facing death easier,” Mr. Rosen said. “I love them all so much and appreciate their love in return. I often wonder what their lives will be like when I am gone, especially the children. I hope I have had a positive influence on them. I have tried to be a good man, a good husband and a good father. I have also tried to be a good friend.”
And now his friends and family are getting together to salute him, and to raise money for ALS research with a concert and fundraiser from 2 to 7 p.m. this Sunday, February 24 at Old Stump Brewery, 2896 Metropolitan Place, La Verne. A $20 suggested donation includes a beer, and proceeds from admission, raffles and a silent auction will go toward the ALS Association’s drive for a cure.
Mr. Rosen’s daughter, Stacey Rosen-Sturgis, will play a set with her band Soulshine, and longtime local cover masters The Dogs will also be playing. Special guests will no doubt drop by as well, and a food truck will be on hand. And perhaps most importantly, Mr. Rosen plans to attend. More information and presale tickets are available via email at email@example.com.
Amyotrophic lateral sclerosis, also referred to as Lou Gehrig’s disease, is a particularly cruel progressive neurodegenerative disease, occurring in two of every 100,000 people. It breaks down nerve cells in the brain and the spinal cord, reducing functionality in the muscles they drive.
About 5,000 people are diagnosed with ALS each year in the US, and more than half of those live more than three years. About 10 percent of patients live a decade after diagnosis, others just a few months. The cause is unknown and there is no cure.
“I have always been an optimist about most things,” Mr. Rosen said. “I just make myself deal with it without anger or as little fear as possible. I try to be grateful for what I have rather than become angry for what I do not have. I have to say that not being able to speak or eat and drink have really been tough. I try to enjoy the senses I do have and that means enjoying music, art, movies and my mind.”
Her father’s admirable grace and bravery has been moving, his daughter said.
“Through this disease he has also been an example for me about looking at the positive and embracing it,” Ms. Rosen-Sturgis said. “This has been a huge reminder for me to live for those things that matter and to be continually grateful for what I have.”
That word—gratitude—is key to Mr. Rosen’s approach to dealing with ALS.
“The thing that has kept me going is my love of life,” he said. “I really love nature and look forward to each day. I am grateful to life itself, and I am particularly grateful to my wife. She has been a saint to me. She never complains and is always there when and if I need her.”
Mr. Rosen says he tries not to “bother her” with things he can do for himself, like taking medicines, feeding himself through a feeding tube and washing his own clothes.
“I put the trash out and clean the cat box, and after going shopping with my wife, I help bring the groceries in. I know those seem like little things but in my condition they are a lot.”
Ms. Giles says it is her husband’s energy that keeps her going.
“Lou’s enthusiasm for life has always been contagious,” Ms. Giles said. “Despite his ALS condition, his continued excitement about so many things is amazing. He is such an inspiration!”
He’s always been a nature lover. With walking becoming ever more difficult and fraught, he and Karen have taken to watching through the windows of their patio.
“They let nature come to them,” Mr. Rosen’s daughter said. “They can watch the animals and birds for hours.”
He’s had plenty setbacks, and has dealt with indignations that would have caused most of us to shut down and turn inward. But not Lou.
“I have never really felt like giving up,” he said. “I get tearful sometimes when my wife makes a wonderful dinner and I cannot eat it. The same when people have a nice glass of beer or a good wine. I do not resent it. I just feel sad that I can no longer enjoy it for the rest of my life.”
Mr. Rosen’s hopeful there will someday be an effective treatment for ALS, but he is realistic about the impediments—both monetary and bureaucratic—to getting there.
“The use of stem cells for certain kinds of ALS has great promise,” he said. “I also think that someday they will have a way to repair the genes that cause it to happen later in life. There are all kinds of new drugs coming out but there is only one that seems to prolong your life for a few months. At least it is something. The trials are so expensive and every new drug must go through at least three different trials and sometimes each costs millions of dollars.
“My message to the research community is don’t give up. Keep trying new avenues. Share your failures as well as your successes and do it internationally.”
He is matter of fact about mortality. He’s facing ALS with dignity, and is as far from angry as one can imagine.
“We all have to die someday, it is just when,” he said. “One of my best doctors at Cedars, when asked what has he found that prolongs life, said, ‘Be happy.’ He has found that people who stay happy, even with ALS, live longer.”
It’s clear he’s taken that advice to heart.