Doctors confirm that ALS patients with positive attitude feel less pain
A team of Israeli researchers finds scientific proof to oft-heard anecdotal evidence.
The majority of people with Lou Gehrig's Disease, also commonly known as ALS, only live for about five years after their initial diagnosis. But famed physicist Stephen Hawking lived with the disease for more than 50 years. One reason, according to new research, might have been his positive outlook on life.
Doctors have long told patients with chronic illnesses to keep a "glass is half full" attitude. You often hear about people "beating back" cancer because of their stubbornness to give into the disease. Even medical clowns, who roam the halls of hospitals, are viewed as a way to change people's outlook and possibly their prognosis as well.
But a team of Israeli doctors has gone a step further, providing scientific proof to this oft-cited anecdotal evidence. Neurologists from Hadassah Medical Organization and from the Tel Aviv-Yaffo Academic College published a study with some remarkable findings. They discovered that ALS patients who shun depression and opt for a positive attitude have a higher perceived quality of life, regardless of their physical impairment.
Forty-one ALS patients participated in the study. "One might expect that terminal patients in general, and ALS in particular, will have difficulty attaining and maintaining hope, due to the incurable nature of the disease," the researchers pointed out. "However, as demonstrated in our current study, hope is not necessarily linked with prognosis or existence of a cure. In fact, hope improves coping even in terminal patients with physical limitations."
Dr. Marc Gotkine, a British-born doctor who moved to Israel shortly after getting his medical degree, helped lead the new research. "Having an optimistic outlook and being hopeful is very much important to maintaining quality of life in ALS," he told From the Grapevine when we visited him last week at Hadassah Hospital in Jerusalem.
The mild-mannered Gotkine tries to keep this in mind when breaking news of an ALS diagnosis to a patient. "The way that it's told over initially is actually going to very much dictate the state of mind of the patient and their family throughout the entire course of the disease and how well they'll be able to cope with that. So I think that for that reason it's very important to do it in the right way."
Gotkine said that doctors can help in this process. "I think that it can't really be done as a one-time thing: that someone comes in, you meet them for the first time and drop a load of bricks on them. It really mustn't be like that. I think that it's important that you explain that there's certain options and they have the time to digest the information. I don't have a set way of doing that. It's about gauging who the person is in front of you, what's important to them."
This can be particularly challenging when dealing with juvenile onset ALS. Gotkine has seen patients as young as 14 with the degenerative disease. "We see teenagers with ALS," he told us. Hawking was diagnosed with the disease at the age of 21, and only given two years to live by his doctors.
In general, ALS can be a challenging disease for doctors like Gotkine. In 90% of cases, its cause is not known – although there are possible genetic and environmental factors. Sixty percent of people with ALS are men. Gotkine and his colleagues have even found that there's a correlation between participating in certain sports and being diagnosed with ALS. "If you look at the general population of people with ALS who came to the clinic, we had a vastly overrepresented number of triathletes in the ALS population compared to what you'd expect," he said. "Now that doesn't mean that doing triathlons will cause ALS. It doesn't mean that at all. But I think that it's definitely possible that whatever genetic factors mean that someone is going to be very successful in endurance sports such as triathlons, perhaps those genes themselves are actually related to ALS in some way."
Despite his diagnosis, Hawking didn't let the disease stop him from achieving breakthroughs and retained a positive outlook throughout his life. His wild wheelchair driving became legendary, and he eschewed his role as someone with a disability. According to a 2002 biography, he preferred to be regarded as "a scientist first, popular science writer second, and, in all the ways that matter, a normal human being with the same desires, drives, dreams, and ambitions as the next person." His wife, Jane Hawking, added: "Some people would call it determination, some obstinacy. I've called it both at one time or another."
MORE FROM THE GRAPEVINE: