Thursday, April 10, 2008

A Model For Independent Living

Very interesting article from the Bainbridge Island Review's Chad Schuster:

Like many others in his line of work, Todd Stabelfeldt grew up with technology.

He watched with interest as the Internet took off in the 1990s, and quickly developed a liking for computers.

Eventually he plugged in, taking classes and landing a job at Cortex Medical Management Technology, a Seattle software company.

“I’ve wanted to reach out since I was a young kid,” said Stabelfeldt, who at 29 is now Director of Operations at Cortex.

It is that impulse – the desire to connect – that in part influenced Stabelfeldt’s career choice and his interest in gadgetry.

But he has an equally pressing personal motivation to remain on the cutting edge.

As a quadriplegic, it is technology, combined with initiative and ingenuity, that affords Stabelfeldt his most prized possession — independence.

“That’s a word that for me that is bold, italicized, underlined and capitalized,” said Stabelfeldt, surrounded by the various devices at his Wyatt Way apartment that allow him to work and live, for the most part, on his own terms. “There’s no dollar amount to solve for that.”

Neither, he said, are there enough dollars to solve the plight, however uncommon, of someone in his position – physically disabled, but able and preferring to work.

Though he strives toward independence, living in a standard apartment with a roommate, Stabelfeldt still requires care that isn’t getting any cheaper.

In fact, he expects his care costs this year to double, to $110,000, due to recent changes – his caregivers can no longer be designated as independent contractors – that will require him to pay higher taxes.

He makes too much money to qualify for government help, but not enough to pay for the support he needs.

So, even as he continues to pursue greater independence, he must continually fight to preserve what he has.

Now, through the creation of a foundation that will bear his name, he wants to help others facing similar challenges.

Funded by several technology companies, the Todd Stabelfeldt Foundation is slated to launch in the next few months. Its aim is to connect people with disabilities to new technology and other help that might otherwise elude them, and to reach out to occupational therapists in an effort to continually improve available care.

Stabelfeldt’s life, too, will be enriched.

By sharing his story, he hopes to become a national spokesman for overcoming disabilities; he’s even in discussion with an island developer about the possibility of building a customized condo that would serve as a model for disabled, but independent, living.

Stabelfeldt was recently the beneficiary of about $30,000 worth of new batteries that will back up the labyrinthine electrical system he’s fashioned in his apartment. Donated by power system company Chloride Group, PLC, the batteries will replace the outdated and underpowered ones that can no longer keep up with Stabelfeldt’s gadgets. Without proper backup, Stabelfeldt’s entire system – including the breathing apparatus he uses when he sleeps – are useless if power outages occur.

Chris Gerhardt, who lives on Bainbridge Island, is helping Stabelfeldt organize the new foundation. He said it needs between $1 million and $2 million to get off the ground.

Several tech companies – among them Chloride and Internet technology consulting company Denali Advanced Integration, of which Gerhardt is the president – have committed funding to the foundation, the logistics for which are now mostly in place.

Its mission, Gerhardt said, is far reaching.

“This isn’t just about Todd,” he said. “This is about sharing what Todd has done.”

As a fellow techie, Gerhardt is impressed with Stabelfeldt’s resolve and resourcefulness; as his friend, he is inspired.

“Sometimes I’ll start to complain to Todd about something, and then I think about it and realize I can’t,” he said. “I joke with him about it. I tell him it’s hard being friends with someone you can’t complain to.”

Stabelfeldt admits he’s not been immune to the urge to complain, since suffering the injury – he was accidentally shot by his cousin at the age of 8 – that robbed him of most physical movement.

He remembers one time in particular, when he was a child, that he was upset by a bed sore.

“I got really angry about my whole situation,” Stabelfeldt said. “There was a moment when I said, ‘What are you going to do with this. This is not acceptable. I need to make a change.’”

So, Stabelfeldt shifted his attitude.

He began looking for way to complete the daily tasks that most people take for granted, like turning on lights or opening doors. Some fixes were simple. Others required elaborate planning. He adapted parts to non-conventional uses. If he couldn’t find the right piece, he called around until he did.

Slowly, solutions came, until eventually Stabelfeldt had created the ever-evolving system that now is vital to his independence.

“Part of it was just waiting for technology to catch up with my needs,” he said. “Items were being created at a rapid rate for convenience so that people could pick up a two liter of Coke and a bag of chips and never leave the couch.

“Those convenience items, if slightly augmented, become independence items for me.”

His cell phone, for example, is an off-the-shelf model. But Stabelfeldt had to come up with a way to modify it to fit his unique needs. Like all of his creations, the entire unit must be voice activated, or must respond to movements of his chin, breath or face. Compared to some of his projects, Stabelfeldt said, the cell phone modification was fairly simple. Unfortunately, simple doesn’t always equate to cheap – in this case, the fix cost several hundred dollars.

More complex arrangements are found at his workstation – Stabelfeldt still physically commutes to Seattle once a week – and in his bedroom, where he has access to more movies and entertainment than he has time to enjoy.

He controls his computer by way of his mouth, which he uses to move the mouse via a special instrument; puffs of air equal mouse-clicks.

Gerhardt, who met Stabelfeldt about four years ago during their respective ferry commutes, said he regularly marvels at his friend’s ingenuity.

“This doesn’t exist anywhere,” he said, of Stabelfeldt’s cell phone. “He came up with it in his head.”

Though he knows some of his innovations can help others, Stabelfeldt said not everyone can benefit directly from them. For one thing, he’s on the severe end of the paralysis spectrum; since many who suffer his specific injury don’t survive the initial trauma, there are few people who even face his living situation, let alone while trying to hold down a full-time job.

“My circumstance is so outside of the norm that I’ve almost fallen into the category of the bizarre,” he said. “That’s part of the frustration for me – I just can’t handle the fact that I’m the only one I know.”

Aside from making available some of his gadgets, Stabelfeldt hopes to motivate others with his story. He already participates in mentor programs and has increasingly taken on large speaking engagements. This year he spoke at the Denali Christmas party.

“There wasn’t a dry eye in the room,” said Denali Executive Vice President John Convery. “Seeing him in front of those people is tremendously inspirational. He teaches people that if they set the bar high and reach high they can improve the quality of their life.”

Last month, as workers were installing his new batteries, Stabelfeldt said he’s excited about the promise of his new venture.

As for his own troubled financial situation, he’s frustrated, but hopeful. Gerhardt has often said Stabelfeldt is a victim of his own success, since he’d rather work than be supported by the government. Not content to be a victim, Stabelfeldt characterizes the situation differently.

“Either this year I’ll make it or I’ll end up in a nursing home,” he said. “But I don’t settle. I don’t rest until it’s done.”

Tuesday, April 8, 2008

Being Cool Has Its Benefits

According to the Spinal Cord Injury Information Network, there are about 11,000 new cases of spinal cord injuries each year in the United States. As of June 2006, there were about 253,000 people living with a spinal cord injury.

When a spinal cord injury occurs, there is the primary insult -- the impact -- which neither doctors nor patients can do anything about. But there are also secondary injuries -- the damage that happens in the minutes, hours, days and weeks after the primary injury.

Dalton Dietrich III, Ph.D., from the Miami Project to Cure Paralysis, said, "You have these secondary injury mechanisms that lead to progression of damage and that's where we are working in the laboratory to develop new strategies, new drugs, new therapies to target that secondary injury."

Doctors are running icy cold saline through the bodies of newly injured patients to lower their body temperature to about 92 degrees for two days immediately after their injury.A new treatment for spinal cord injuries is under study at the Miami Project to Cure Paralysis. In animal studies, Dr. Dietrich said, "We found that if you lowered temperature of the spinal cord after injury, we could actually improve motor function. The rats walked better. Also, if you looked at the pathology of the spinal cord, there was preserved tissue."

It was promising enough to try in humans. The first human patient was "cooled" in January 2006. Several more patients have received the treatment since in an experimental study. Dr. Dietrich said, "So far it looks like it's safe. We've gotten some good results. It appears to limit secondary injuries that can lead to progression. [Spinal cooling] does a lot of good things. Cooling a patient a couple degrees seems to work very, very well."

Dr. Dietrich says the earlier the treatment is started after the initial injury, it's likely the results will be better. He attributes the impact of hypothermia to its ability to affect multiple injury mechanisms, rather than targeting just one as drugs so often do." You actually need a combination therapy ... to actually stop cells from dying and that's what hypothermia does. It targets multiple injury mechanisms and leads to long term protection. It protects those axons running up and down the spinal cord, which is extremely important in having the brain talk to your muscles and vice versa," Dr. Dietrich said.

He emphasizes that it is important to not cool the body too much. There is a very distinct temperature that needs to be reached for the procedure to be safe and effective. Cooling the body too much can cause side effects like cardiac arrhythmias and infection.

Dietrich says, "If you can limit those secondary injuries, you can turn a complete injury possibly into an incomplete injury and there you have the best chance with that rehabilitation strategy to now regain significant walking function, sensory function and other consequences associated with spinal cord injuries."

The technique is still under study in Miami.

Thursday, April 3, 2008

Celebrating Life

Esmeralda Galvan remembered her daughter Sofia's long, good-spirited fight for life in their home in Fresno.

Sophia Elena Galvan, 26, died March 20, and the Mass was celebrated Friday in St. Helen's Catholic Church.

Miss Galvan's relatives and friends remembered a highly intelligent, dedicated woman who persevered despite painful injuries she suffered when another driver's truck struck her family's car when she was about 18 months old.

From toddler to student carrying a 4.0 grade-point average, she remained upbeat, even during her last years as a quadriplegic.

Miss Galvan had managed cheerfully to bear an ordeal that began when a vehicle driven by a 70-year-old man, who apparently was lost, ran through a stop sign and into the Galvan family's car.

It rolled twice, Esmeralda Galvan said.

Miss Galvan was injured high on her spinal cord, causing paralysis and impeding her breathing.

She was treated at University Medical Center, Valley Children's Hospital and finally Fresno Community Hospital. She underwent six operations on her eyes.

She spent her last three years in and out of the intensive care unit, Esmeralda Galvan said: "Everybody there knows us."

Esmeralda Galvan and aunts Linda and Pearl Guillen spoke in the family's living room in grief brightened by happy memories.

They spoke of how Miss Galvan had a life of medical crises, but also a spirit that always showed.

"The last two years, Sofia was in and out of the hospital with pneumonia, and coded on me seven times," her mother said with a tone that mixed her love of her daughter, and her effort and sense of accomplishment at extending her daughter's life. The short-hand "coded" referred to times when Miss Galvan's heart had stopped until medical intervention got it beating again.

The original traffic collision, followed by medical crises, failed to keep Miss Galvan from excelling at Roosevelt High School.

She never complained, her family said. When she got a new wheelchair, she said happily, "As soon as the weather's good, I'm going to go out."

She looked forward to meals at the family's favorite DiCicco's restaurant.

Miss Galvan took pride in her survival and success, telling people, "I'm a miracle child."

She received 24-hour in-home supportive care under the state Medi-Cal and Healthy Families Program.

Her aunts recalled a camping trip Miss Galvan loved, but Linda Guillen didn't. She called it "my first and last time. I don't sleep on rocks."

Miss Galvan's mother and aunts remembered how they had come to live with her severe injuries while celebrating the life she made for herself.

They concluded that it is the quality of life, not its length, that counts.

Miss Galvan had known more than her share of suffering, they said. Her father, Roberto, had died on Christmas 1998 from a drive-by shooting.

She loved watching "Days of Our Lives" on daytime television and remained excited at the autographed photo sent to her by Peter Reckell, who plays the character Bo Brady.

Comedian George Lopez sent her an autographed photo, hat and T-shirt plus a signed script from his show.

Miss Galvan celebrated an 18th birthday telephone call she received from running back Herschel Walker, then playing for her beloved Dallas Cowboys. Cowboys quarterback Troy Aikman sent her a signed jersey.

Miss Galvan had been a star herself at her graduation from Roosevelt High in 2000, receiving a standing ovation as she participated from a gurney. Esmeralda Galvan remembered how her daughter and the rest of the family enjoyed her triumph together.