[BobbyB]

Barnes doctor copes with Lou Gehrig's disease
Aaron Weidman
Issue date: 9/12/07 Section: News
PrintEmail DoubleClick Any Word Page 1 of 2 next > Jason Goldfeder tries to be normal.

He mentors medical students, sharing with them his insight, clinical judgment and knowledge base about the field. He gives weekly lectures on men's health, his primary area of expertise. He volunteers at Washington University's Wohl Medical Clinic, helping researchers test the drugs of the future. He still delivers, as a close colleague puts it, "the highest quality medical education."

But Goldfeder, a specialist in internal medicine at Barnes-Jewish, can't be normal, not when he is confined to a motorized wheelchair, when he has to wear a split on both index fingers in order to type and when his voice is so weak that each phrase becomes a long, laborious chore.

Goldfeder has Amyotrophic Lateral Sclerosis (ALS), more commonly known as Lou Gehrig's disease for the crippling effect it had on the former baseball star. ALS is a progressive, neurodegenerative disease, which disables the nerve cells that control voluntary movement in the body.

Goldfeder, the former director of the Wohl Clinic, was diagnosed in November 2004, and since then the disease has robbed him of many of his physical abilities. Walking first became difficult in the winter of 2005 and by that summer Goldfeder had begun to use a cane. Over the next year and a half he replaced the cane with a walker and then got a motorized wheelchair in January.

Goldfeder's arms followed a similar deterioration to the point where it became difficult for him to write anything at all. E-mails that once took him two minutes to type now take him half an hour. Over the past year, Goldfeder's speech has become the latest victim of ALS.

"The worst thing about the disease is that it continues to get worse," said Goldfeder. "It's hard to get used to a baseline, because once I get used to one form of equipment it doesn't work anymore."

Making matters worse for Goldfeder was his early, unexpected diagnosis. While most ALS patients begin to show signs of the disease between the ages of 50 and 60, Goldfeder was only 34 when he first noticed abnormal behavior in his left foot. His first thought was that the problem was a localized "foot drop," the result of an oppressed nerve below his knee.

"In early August I was running to catch a Metro train when I noticed that my left foot was not clearing the ground the way that it should," he said. "Over the next few months my foot would slap the ground a lot. It was a complete shock [when I was diagnosed] because the symptoms were so minimal at the time. Up until that November I was still doing a regular exercise routine with no weakness or difficulty."

While he can no longer follow his same fitness schedule, he tries to maintain a sense of normalcy in his work. He worked full-time until the end of last school year and continues to work several days each week at the Medical School, either lecturing or volunteering at the clinic.

"Work makes me feel normal," said Goldfeder. "Many people would have stopped working and gone on vacation as much as possible as soon as they got the diagnosis, but stopping work was something I always dreaded doing. My biggest fear is being bored with too much free time."

Cutting back on his workload was not so much a choice as a necessity for Goldfeder. Because of how long it took him to get ready in the morning, Goldfeder would have to set his alarm for 5 a.m. in order to be in his office three hours later.

"It became too hard to get around," he said. "I was getting more tired and I kept having to wake up earlier in order to get to the hospital."

Nevertheless, the fact that Goldfeder continues to work at all has not been lost on his colleagues.

"I have not seen anyone professionally persevere under such circumstances as Dr. Goldfeder," said Lee Demertzis, a chief resident at the Medical School. "His love for patient care and teaching gives him the will to do astounding things. [His co-workers] all deeply respect his commitment and have been inspired by his leadership."

Outside of the office, Goldfeder has still been able to enjoy some recreational activity. He attended Super Bowl XXXIX in 2005 and has also spent time skiing and cruising since his diagnosis. And while these vacations also serve to maintain normalcy, his true passion will always be his work.

"Any patient with ALS knows that his life span is limited," he said. "I will try to teach as long as possible because it definitely helps me to stay feeling productive."

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[Wren]

Hurrah for you for posting this about someone at Barnes.

Barnes is such a very special hospital and Washington University a special school.

I understand that your reference was to ALS and I'm certain many people thank you. I thank Barnes for two incredible brain surgeries. It's a magnificent place.