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Below we share another story of a gulf war veteran from one newspaper in this country.  VT is sharing yet another story on a Gulf War Veteran living life to the fullest day by day.  Inspiration and hope lives in reading and hearing from our veterans, their family members, their friends, employers, and neighbors.

Race against time: ALS patient works with researchers
Published: Sunday, October 11, 2009

NEWS HERALD ARTICLE

By Lynne Meredith Schreiber

Brian and Porsha Chalmers of Lincoln Park share a moment with the Detroit Tigers’ mascot during a recent ballgame. Brian has a fatal disease, and the couple try to make every day count.

“If they don’t find a cure, he will cease to exist — and that will make me very, very sad,” says Porsha Chalmers of Lincoln Park, blinking back tears.  Her husband, Brian, sits in a wheelchair in the living room of their bungalow, using his eyes to type a message on the specially fitted laptop computer she set before him.  The 42-year-old Desert Storm veteran and former Ford Motor Co. forklift driver cannot walk, cannot talk, cannot move his fingers except for a click on the mouse to indicate his message.

His long dark hair is pulled into a ponytail and his blue eyes still shine brightly, as in all the pictures that fill the walls of their home.  Every morning, Porsha dresses him, grooms him, helps him to his mechanized chair. Every morning, she is grateful to have another day with the man she loves.  “Laugh at the disease!” Brian says through the computer. “If I wake up, fine. If I don’t, oops!”

It’s easier for the dying to make their peace with what lies ahead. He is rendered powerless by an incurable disease — amyotrophic lateral sclerosis, a progressive disease of the central nervous system that causes the gradual degeneration of nerve cells that control voluntary muscle movement.  ALS, also known as Lou Gehrig’s disease, affects more than 30,000 people in the United States. Approximately 5,600 new cases are diagnosed every year.

Brian is being treated at the Hiller ALS Center at Wayne State University in Detroit, where doctor-scientists simultaneously treat patients and study the disease.  In fact, their method of study involves letting the patients teach them about how the disease progresses, to gain clues into the puzzle that is human biology. 

“You can learn so much about a disease from a single patient,” says Dr. Jeffrey Loeb, director of research for the Hiller ALS Center and a lauded neurologist.

The center was founded in 2007 with an establishing donation from Jim Hiller, whose mother died of ALS.  “It is hard,” says Porsha, a vivacious, friendly woman who is also a former Marine. “We’ve been together 21 years. This shouldn’t happen. He’s a very talented man. There should be a cure.”

Their home is filled with evidence of Brian’s former agility. Exquisite woodwork detail — his handiwork — decorates the walls. Porsha brings out a delicately carved cross, hand-done by Brian.  Their son, Matt, says hello. He has Brian’s brilliant eyes and Porsha’s face. He will study architecture in college with a goal of retrofitting buildings to accommodate individuals like his dad. 

 Brian’s ALS was diagnosed in 2007, after a bout with pneumonia exacerbated the twitching he’d had since the war.  “He was tripping, falling, twitching, slurring his words,” says Porsha.  “I made the bed one morning, and I noticed the brand-new sheets were worn thin at the foot because his feet had been twitching all night, every night.”

The symptoms were probably there before the illness, she says, but they were things they didn’t notice as highly unusual until they increased. No one knows what causes ALS.  Brian’s family has a history of neurological disorders including Parkinson’s, but Porsha believes something in the war or at Camp Lejeune, where they were stationed, turned a genetic predisposition into an incurable illness.

Since his May 2007 diagnosis, Brian and Porsha have seized the chance to truly live life. They spent the following year traveling, spent time with friends and family and took lots of pictures.  The illness has given them a renewed appreciation for each other.  “I used to say, ‘I’ll do that later.’ I don’t anymore because how much later do I have?” says Porsha.

“I just go one day at a time,” says Brian, through his computer. “I don’t let it stop me from living. I’ve been to the last two Tigers games.”  “Everything happens for a reason,” says Porsha. “We just don’t know what it is. Brian asked, ‘Why did God silence my hands?’ He’s a very talented man. I said, ‘He didn’t silence your spirit.’”  From upstairs, in Matt’s room, a song comes on the radio. The words trail down and Porsha says, “It’s your theme song, honey,” swiping tears from her face.

It is Tim McGraw’s “Live Like You Were Dying.”

“If for no other reason, the patients are the main motivator to make significant discoveries and figure out how to beat this ghastly disease,” says Dr. Richard Lewis, HALS clinic director and associate chair of neurology at WSU Medical School.  For information about the Hiller ALS Center, call 1-313-745-6124.