Need for Caring Approach Leads Local Man to Cedars-Sinai ALS Program
Marc Bennett makes his living helping people find answers. As a clinical psychologist with his own private practice, he's helped adults and couples face down a variety of issues over the years.
But three years ago, it was Bennett who needed answers.
First, there were hand cramps while he was writing. The cramps got worse, and by early 2013, the weakness had begun to make it difficult for him to do simple tasks such as shaving.
First, he visited his primary care doctor. Then came the visits to a neurologist, where Bennett first was told he may have amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease.
"I got very scared following that visit," he said. "The neurologist seemed fairly confident it wasn't serious. But the information he was telling me about what it could be was pretty terrifying, so I remember being really anxious and sitting in a parking lot tearful, calling my wife, Allyson, and getting reassurance from her."
After several months and a battery of tests, including the use of electromyography, a second opinion confirmed Bennett had a slow-progressing form of ALS.
Still, he said, even though Bennett now had the answer to the question of diagnosis, he was missing something else that was vital - compassion.
"I was coming out of a clinic where there was a lack of sensitivity to the gravity of the disease," Bennett said. "Then we spoke with some relatives about our experience and my uncle started talking to my wife and said, ‘Well you don't have to go back there.' And that opened up the thought of, ‘Yes, we're not stuck here.'"
That's when Allyson called Cedars-Sinai and reached out to Tami Kendra-Romito, the Neuromuscular Disorders Program clinic coordinator.
"My wife said, ‘We're in a bind here. We need better care and a sensitive doctor,'" Bennett said. "And right away, Tami was great at getting us in and setting us up with Dr. Richard Lewis."
ALS, or amyotrophic lateral sclerosis, is a progressive degenerative disease of the nervous system, affecting the mind and body in myriad ways, including muscle weakness and deterioration. While there is no cure for the disease, the Cedars-Sinai ALS Program provides patients with a multidisciplinary team approach to help manage it.
It was Lewis, the director of the EMG Laboratory and co-director of Neuromuscular Medicine in the Department of Neurology, who confirmed Bennett's ALS diagnosis in October 2013. However, it was the way Lewis did it – and the way he has handled the care ever since – that has stuck with Bennett.
"For someone to deliver those types of diagnoses, he does it with a kindness, the best way he can," Bennett said. "It's not easy going to these appointments. It's not like you're going to see your primary care physician or the dentist. It's an emotionally heavy meeting every time you go, built with fear. So having a sensitive and caring doctor like Dr. Lewis, I think, is critical."
The experience of patients like Bennett is vital to Lewis, whether it's through day-to-day care or finding adaptations that allow patients to lead their fullest lives.
"It's fulfilling to realize how much you can help people in their time of need – helping them live their lives as fully as they can, helping families deal with changes that can be seen on a day-to-day or month-to-month basis, dealing with losses, and figuring out ways to make life fulfilling despite the fact that you have the disease," Lewis said.
"When my patient says I was compassionate and understanding, and made them feel better despite this terrible disease, I feel good about that."
Because of the unique, slow-progressing nature of Bennett's ALS, he hasn't had to visit Cedars-Sinai that often. But he carries more than a few empowering memories from his interactions with Lewis and other members of the ALS Program's team.
"I love the pulmonologist," Bennett said about his meeting with Ashraf Elsayegh, MD, director of the Medical Intensive Care Unit in the Women's Guild Lung Institute's Division of Pulmonary Medicine. "He was funny and helpful. I liked his encouragement with staying in shape and conditioning and fighting back against the disease to some extent."
For now, Bennett enjoys the access and personal contact he has as a Cedars-Sinai patient. For example, he's reached out to Research Program Administrator Peggy Allred, PT, DPT, to discuss clinical trials and exercise, and he has appreciated Kendra-Romito's immediate response to any questions.
"We want our patients to feel confident that no matter the level of concern or stage of disease they are in, we are here for them," Kendra-Romito said.
Bennett recognizes the reality of ALS when he faces challenges such as arm fatigue while carrying a cup of coffee and shaking while writing and typing. His wife took over tasks such as unscrewing jar lids or washing the dishes. He's lost his pincher strength and within the last year he's had five falls, most recently hitting the back of his head. Luckily, he's been uninjured.
"It's odd, because it's slow enough to where I can't recognize the change until I look back," he said. "I don't notice the change because it's not day-to-day, week-to-week, not even sometimes month-to-month. It's every few months, there is a drop in something."
So, he's learned to adjust: He takes the elevators instead of stairs to get his mail at the office. He's found a tool to assist with buttoning shirts. And, he's converted all his pant zippers to Velcro.
However, Bennett admits there are other struggles that are more internal and less visible.
"I can't play tennis with my son, and he's getting pretty good for a 9 year old," he said. "I would love to get out there and have rallies with him, and I just have to make peace with that."
Despite ALS' obstacles, Bennett remains optimistic. He practices Pilates, sees a physical therapist and also receives regular massage therapy. He continues to drive to and from his practice and refuses to let the disease get in the way of his hobbies: traveling, camping and hiking. He's planning a big cross-country trip next year.
Bennett also tries to avoid being panic-stricken or excessively worrying about his children.
"I also just realized, and maybe it's just because being a psychologist or my research and practice in Buddhist psychology, that after a few months there is no payoff in allowing myself to think what is going to happen many years from now, because then I just lose that day," Bennett said. "Whenever I find myself getting pulled away, I remind myself, 'I don't know about the future, but if I allow myself, I'm kind of killing myself now.' So I come back to the present and I have a variety of techniques and strategies to do that, and it doesn't always work, but it works a lot better now than it did in the beginning."