‘Anyone’s Life Story’ Is Newtown Resident’s Story

By Nancy K. Crevier

“Quite a few people still don’t know what ALS is,” said Bob Murray, a resident of Bethel Health Care Center who moved there a year ago from his Newtown home. Mr Murray was diagnosed just over four years ago with amyotrophic lateral sclerosis (ALS), also known as “Lou Gehrig’s disease.” An incurable, degenerative disease, ALS affects nerve cells in the spinal cord and the brain controlling voluntary movements, and weakens muscles. Leg and arm movement, speech, neck strength, the ability to breathe, and the ability to swallow are eventually affected as the disease progresses.

It is not known what causes ALS, and there is no cure. Research on the disease is limited, in part because while ALS afflicts nearly 5,600 people every year in the United States, it a small number when compared to the more than 1.3 million Americans that the American Cancer Society estimates are diagnosed with some form of serious cancer each year.

“They are making great strides with cancer treatment, because it was brought to the forefront years ago,” Mr Murray said. “People came together in a bigger group. That means more money comes in, more research is done, and there is more possibility of treatment,” he said. Drug companies are not as willing to spend research money on a population of patients barely larger than the town of Newtown, so ALS research currently relies primarily on private donations.

Mr Murray would like the general population to be more aware of ALS. He feels that research will be able to move at a quicker pace and better treatments will become available to ALS patients when greater support is achieved.

That is one reason that he submitted his story to the Muscular Dystrophy Association’s (MDA) annual “Anyone’s Life Story” series for consideration, in March. On April 6, Mr Murray received word that his story was one of 31 from hundreds of entries nationwide that will be featured on the als-mda.org website in May. Every day in May, ALS Awareness Month, a story of one person affected by ALS will be featured on the website. Mr Murray’s perspective on life with ALS will be online Sunday, May 10.

“I think basically that Bob’s story shows how he has a positive attitude and is very proactive in his care,” said Gloria English, health care service coordinator for the Muscular Dystrophy Association. “He just embraces life, however it comes to him.”

The purpose of the “Anyone’s Life Story” series, started in 2006, is to let people know that anyone can be stricken with ALS, said Ms English, and that the MDA continues to fight to find treatments and a cure for ALS.

If even a few people read his story, Mr Murray said, others may hear about ALS, and the spectrum of support will be widened.

So few people overall ever hear of ALS beyond the Lou Gehrig story that they believe the disease no longer exists or that it has been “cured,” he added. Until, that is, someone close to them is affected.

A year after his diagnosis, Bob Murray could still walk without the aid of a walker and could still drive. A year later, his dexterity was compromised, making him unable to feed himself or brush his own teeth.

Today, he spends the bulk of his day in a wheelchair controlled through subtle movements of the head. He has lost the ability to move his arms, and while he can still get out of the wheelchair and walk about five feet at a time, “It feels like I’ve run a marathon,” Mr Murray said.

Still, he counts himself fortunate. “I have a slow progression ALS,” he explained. Many patients diagnosed at the same time he was are presently unable to walk at all, or to talk.

Mr Murray’s speech is still very good, and his swallowing reflex works well, allowing him to eat and drink normally, and he can manipulate the mouse to type on his computer.

He knows, though, that the day will come when those abilities will deteriorate. He practices each day using the eye-gaze system to control his computer. The specialized technology, similar to that used by fighter pilots, was developed by Voice For Joanie, a volunteer organization that develops the technology, and supplies and trains those who can benefit from it.

‘Keep Going Forward’

“My philosophy in life is to keep going forward. Don’t look back. If you do, you’ll run into things going forward. Today is today, so you need to live for today,” said Mr Murray.

It is a challenge, said Mr Murray, to stay a step ahead of ALS, but he is dedicated to doing so. He takes part in daily physical therapy, practices meditation, researches updates on ALS treatment online, and has taken part in drug trials through Columbia Presbyterian Hospital in New York, where he is under the care of Dr Hiroshi Mitsumoto.

He is extremely appreciative of modern technology that allows him to stay in contact with the world around him — the high tech wheelchair, the specialized computer system, a blow tube that allows him to call for assistance in his room, and the Internet.

 “I love Facebook,” said Mr Murray. “What a great avenue it is.” Facebook has allowed him to reconnect with his Newtown High School friends and college friends, he said, and once a month now he hosts a “guy’s night out” at the Bethel Health Care Center with takeout food, “and a lot of good laughs,” he said.

 “In getting to know my story [my friends] have a personal connection to ALS now,” Mr Murray said, and the more people with that kind of connection, the better chance awareness will generate funding for research.

He reaches out to others at Bethel Health Care Center, too, through his job interacting with new patients at the center. “I go in to new patients and tell them what to expect as a patient here at Bethel Health Care Center. I tell them the ins and outs of the place, sort of like a Welcome Wagon,” said Mr Murray.

His greatest outreach this past year, though, has been through the support group he has founded. While at therapy one day at Columbia Presbyterian, he mentioned that he wanted to start an ALS support group in Bethel. Gloria English and Mary Harrington of MDA helped him get the group up and going.

“It is the first one in upper Fairfield County,” Mr Murray said. “There is one in New Britain, one in White Plains, but there was nothing in-between.”

The group consisting of five families, so far, meets every fourth Wednesday of the month, at 5 pm, at Bethel Health Care Center. It is open to all ALS patients, caregivers, and family members. “It’s been great,” he said. “One piece of information or a problem that a family has, another can learn from.”

The majority of research on ALS is at the Therapy Development Institute in Cambridge, Mass., said Mr Murray, and he remains hopeful that with enough support, treatments will be developed to enhance and extend the lives of those with ALS.

Mr Murray is hopeful that people will visit als-mda.org during the month of May to learn “Anyone’s Life Story,” including his own. He encourages everyone to visit the site, and select “Donate.” All donations to MDA go directly to research, he said.

Because he and so many others with debilitating illnesses have benefited from technology provided by Voice For Joanie, Mr Murray hopes that visitors to the voiceforjoanie.org website will elect to donate there, as well.

“ALS affects all people, all ages. You can’t say, ‘Find a cure,’ because they still don’t even know where ALS starts in the body. Research for treatment is the most important thing right now.”