Rich Hall had an ordinary life, complete with a two-story house, an engineering job in the city, three children and a beautiful wife.
Hall coached his children’s teams, was an avid reader and overall just enjoyed life. One day he noticed his arms got weak. When physical therapy didn’t help, Hall went to a neurologist only to be diagnosed with amyotrophic lateral sclerosis.
ALS, also known as Lou Gehrig’s disease, is a neurodegenerative disease that slowly eats away at the nerves, which control physical activities such as swallowing, breathing, raising an arm and walking. There is no cure for the disease.
Hall was diagnosed in April 2004. Since then the 49-year-old Redwood Shores resident slowly lost movement in his arms and legs. Six months ago, he started requiring a wheelchair. Everything is now different, even mundane everyday activities, like reading or scratching an itch.
“Little things drive me crazy, like when my nose itches. I have to sit there until someone walks by. The other day [my daughter] Amy walked by and needed to scratch her nose. I said, ‘Do you want to know what it’s like? Don’t itch it.’ She was squirming after a few seconds,” he said.
Last quarter, three engineering students at Stanford University set out to create a machine that would turn pages — a seemingly small feat that stands between Hall and his ability to read something on his own.
Each senior works in a group to build a project that solves a specific problem. The school pairs up with various companies and provides students with a list of potential projects. Students rank the options and are assigned projects accordingly. Seniors Nick Manov, Caitlin Donhowe and Mike Laufer loved the idea of a page-turner, since the impact of the project would be something they could see.
“It was really satisfying and what we accomplished isn’t going make a company a little bit of money, it’s going to change a guy’s life,” said Manov.
The crew met with three different candidates, including Hall, at the start of the project. Manov was able to see firsthand the frustration and effort required for Hall to put his hand on a switch. The meeting inspired the group to create something that would give him a bit of independence.
An avid reader, Hall was able to read on his own for awhile. He would sit and prop the book up a certain way that would allow him to use his thumb to turn the page. As he continued to lose control in his arms, even this solution ceased to work. Hall hasn’t read anything on his own for the past six months.
The $800 project was dropped off to Hall last week. These type of machines are available but can cost between $1,500 to $10,000. Hall is able to use a little switch to control the page-turner. Currently it’s set up to be controlled by his hand but Hall, a mechanical engineer, is going to put the control in his headrest.
Hall already has a book picked out to read once he masters the controls. His high school basketball coach wrote a book about his struggles with multiple sclerosis and sent Hall a copy when he heard about his condition.
As control of his body became more difficult, Hall began using many different technologies. He has voice-activated phones, rests to hold his hand up to use the computer at work and a wheelchair lift allowing him to get to the second floor of his home. Since the disease is always evolving, however, Hall and his family have yet to get into a routine.
Although he and his wife Karen decided to stay in their two-story Redwood Shores home, there have been a number of changes. Hall has three children, Amy, Sara and Spencer. For many years he has coached Amy’s softball team. He was able to continue coaching for awhile. Now he helps out as much as he can.
“I’m out there still. I’m obviously not demonstrating technique but we’re at all the games,” he said.
Getting around in a wheelchair is slowly becoming normal. Hall cannot drive but the family has a wheelchair accessible van. Hall still works full time as a mechanical engineer for Pacific Gas and Electric in San Francisco. The job is a bit of a double-edged sword for Hall, it’s getting harder to do but he couldn’t afford his medical needs without the work.
Hall was approached numerous times by those in the community offering to put together a fundraiser to help. He was thankful but turned them down — until now. His oldest daughter Amy is heading up a barbecue and softball competition at the Belmont Sports Complex Sept. 10. The project is also part of Amy’s attempt to earn her Girl Scout Gold Award, the highest Girl Scout award.
Since the beginning, the family was open about Hall’s disease. He appreciates the support and is just trying to live life.
“Being in a wheelchair and not being able to move your legs and your arms scares people. … I always shook people’s hands [before]. I appreciate when people lift my hand out of my lap and shake it. I can still grip with my hand. It feels comfortable. I appreciate little things like that,” he said. “Most people want to be treated as much as the same as possible.”
The fundraiser is Sunday, Sept. 10 from noon to 5 p.m. at the Belmont Sports Complex, 550 Island Parkway, Belmont. There will be an eight-team softball tournament, barbecue, band and raffle drawing. $20 for adults. $10 for children.
Heather Murtagh can be reached by e-mail: heather@smdailyjournal.com or by phone: (650) 344-5200 ext. 105. What do you think of this story? Send a letter to the editor: letters@smdailyjournal.com.
Info box: Facts about ALS
Muscle weakness or stiffness is early symptoms of ALS. Progression of weakness, wasting and paralysis of the muscles of the limbs and trunk as well as those that control vital functions such as speech, swallowing and later breathing generally follows.
In most cases, mental faculties are not affected.
ALS targets motor neurons, which control physical movement. When the nerves no longer communicate with the muscles, the muscle are unable to function.
ALS is not contagious.
It is estimated that ALS is responsible for nearly two deaths per 100,000 people annually.
More people die every year of ALS than of Huntington’s disease or multiple sclerosis and it occurs two-thirds as frequently as multiple sclerosis.
Approximately 5,600 people in the United States are diagnosed with ALS each year. It is estimated that as many as 30,000 Americans may have the disease at any given time.
Although the life expectancy of an ALS patient averages about two to five years from the time of diagnosis, this disease is variable and many people live with quality for five years and more.
About 20 percent of people with ALS live five years or more and up to 10 percent will survive more than 10 years and 5 percent will live 20 years.
ALS occurs throughout the world with no racial, ethnic or socioeconomic boundaries.
ALS can strike anyone.
There is no cure for ALS. There is medicine that one can take to slow down that degenerative process.
Doctors and scientists still do not exactly know what causes ALS.
ALS is also known as Lout Gehrig’s disease because Gehrig, a famous former baseball player, contracted the disease.
Source: The ALS Association
By Heather Murtagh
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