[BobbyB]

Potter loses fight with ALS MORE ON CHAPMAN
Phil Chapman, Fredericksburg's first potter, succumbs to ALS

BY EDIE GROSS




Date published: 1/26/2008

BY EDIE GROSS


In the end, it was the stillness of Phil Chapman's hands that friends would find so hard to accept.

His hands had built kilns brick by brick.

They'd molded clammy lumps of clay into sought-after bowls and vases.

They'd pulled award-winning pottery out of 1,800-degree furnaces.

They'd rebuilt his Sophia Street pottery studio, board by board, after it was gutted by fire.

But now, 2 years after being diagnosed with Amyotrophic Lateral Sclerosis or Lou Gehrig's disease, Chapman's hands, the tools he'd relied on for more than 30 years, had become uncharacteristically still.

"Life is just mean sometimes," his wife, potter Trista Depp Chapman, said Wednesday, two days before her husband passed away in their Fredericksburg home. "It really is."

Chapman, 55 and Fredericksburg's first full-time potter, was diagnosed with ALS in August 2005, about six months after first telling doctors he was experiencing weakness in his right leg and unexplained fatigue.

The fatal disease attacks the nerve cells in a person's brain and spinal cord, destroying voluntary muscle movement.

Chapman began using a wheelchair about 18 months ago. His bright blue eyes had stayed fierce throughout, but in recent weeks, he'd struggled to speak and his hands remained at rest.

Chapman was fresh out of college and full of enthusiasm when he arrived in Fredericksburg in 1976. His job: to entertain downtown tourists by throwing clay in front of a picture window in a shop at Sophia and Hanover streets.

He later moved his operation to Spotsylvania County and then founded Sophia Street Studios next to his downtown Fredericksburg home. There, he worked for 25 years, mastering the art of raku, a Japanese style of pottery with a cracked finish that became his hallmark.

In 1995, fire gutted the studio. Chapman briefly considered starting over elsewhere, but he stayed and rebuilt the studio with help from friends and other local artists.

Five years later, he and Trista would help start the Empty Bowl Fundraiser, a soup dinner that benefits the Rappahannock Council on Domestic Violence.

Chapman was recognized within the arts community for an almost fanatical dedication to perfection.

He spent years experimenting with kiln materials, temperatures, glazes and finishes before adopting his complex raku process.

He literally set himself on fire once trying to create the perfect clay pot for his brother.

Often at work into the wee hours of the morning, he tolerated no flaws. And even after all the honors, the bests in show and awards of excellence, he didn't consider himself an expert.

"Anybody who thinks they are a master of clay is full of it," he said shortly after his diagnosis. "They call it 'practicing medicine.' This is just 'practicing clay.' It'll always be a challenge."

When the effects of ALS weakened his hands and drained him of energy, he ceased making his own pottery and instead devoted his efforts to helping wife Trista improve hers.

He also mentored potter Daniel Christie, who, like Chapman, arrived in Fredericksburg fresh out of art school with a yen for perfection.

"I always secretly liked the fact that some people, even at the hospital, would say, 'Is this your son?'" Christie said yesterday. "It was something I was flattered by."

After his diagnosis, Chapman enrolled in a drug trial at the University of Virginia, took up yoga, adopted a daily regimen of vitamins and supplements, and barred unhealthy foods from his diet--all in an effort to battle the degenerative nerve disease.

In February 2006, Chapman's prognosis seemed more hopeful when tests indicated he had Lyme disease, a less life-threatening condition than ALS.

But his health did not improve. Speaking became more difficult, navigating stairs dangerous.

On bad days, Chapman said he tried to focus on the family and friends who had supported him.

"I'm so privileged," he said about a year ago. "I can't feel bad about things. I always come back to that. I have it pretty good. For what's happened to me, I have it pretty good."

Last May, he and Trista visited the Grand Canyon, a trip Chapman had always wanted to take.

At home, he settled into a first-floor sun room, created by friends who worried about him going up and down the house's staircase. From it, he could look onto the wisteria-covered patio where he'd asked his wife to marry him.

Beyond that was the gas kiln he'd built by hand. And next door, the pottery studio where he'd spent more than two decades perfecting his craft.

The wall next to his bed was covered with photos: Snapshots from the Grand Canyon. From a 2000 trip to New Zealand. From a canoe outing in Maine. From the couple's honeymoon in the Outer Banks.

In December, just after Christmas, Chapman developed pneumonia. Originally, he resisted going to the hospital.

Ultimately, he spent a week and a half at Mary Washington Hospital, but the antibiotics did not help.

He chose to come home, to the sun room, where family, friends and hospice volunteers made him comfortable.

He passed away there yesterday morning, his wife and Christie holding his hands.



Edie Gross: 540/374-5428
Email: egross@freelancestar.com

http://fredericksburg.com/News/FLS/2...ex_html?page=2

Related stories on Phil Chapman

The fight of his life (12/17/07)
Searching for answers (6/11/2006)
http://fredericksburg.com/News/FLS/2...1262008/350648

[BobbyB]

THE FIGHT OF HIS LIFE

ALS slowing local potter down
By EDIE GROSS
Date published: 12/17/2006


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Potter Daniel Christie met the Chapmans in August after coming to Fredericksburg to work at the LibertyTown Arts Workshop. He's become a steady source of support for the couple, helping out around their studio. 'He's just been a blessing," Trista said.






Phil Chapman's legs have weakened in the past few months, making it tough for him to use the stairs at home.
Potter Daniel Christie met the Chapmans in August after coming to Fredericksburg to work at the LibertyTown Arts Workshop. He's become a steady source of support for the couple, helping out around their studio. 'He's just been a blessing," Trista said.






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Potter Daniel Christie met the Chapmans in August after coming to Fredericksburg to work at the LibertyTown Arts Workshop. He's become a steady source of support for the couple, helping out around their studio. 'He's just been a blessing," Trista said.






In the summer, Chapman felt well enough to help Trista in their Sophia Street studio.
Potter Daniel Christie met the Chapmans in August after coming to Fredericksburg to work at the LibertyTown Arts Workshop. He's become a steady source of support for the couple, helping out around their studio. 'He's just been a blessing," Trista said.






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Potter Daniel Christie met the Chapmans in August after coming to Fredericksburg to work at the LibertyTown Arts Workshop. He's become a steady source of support for the couple, helping out around their studio. 'He's just been a blessing," Trista said.






ALS slowing local potter down

Date published: 12/17/2006


By EDIE GROSS

THE SCARS ON PHIL CHAPMAN'S ELBOWS, chin and left wrist hint at an active childhood, one filled with soapbox derby fender benders and unscheduled flights over bicycle handlebars.

Once, when he was 8, he lost his balance on the ladder leading up to the high diving board, plummeting to the ground and fracturing his skull.

As an adult, Chapman tumbled off the roof of his Sophia Street house, slamming his chest onto a fence and shattering his ribs.

"So I could've been in one of these a lot earlier," he said recently, fingering the armrest of the wheelchair he's been using since August, a year after he was diagnosed with amyotrophic lateral sclerosis, a fatal condition also known as Lou Gehrig's disease.

A Fredericksburg potter for more than 30 years, Chapman, 54, has lost much of the feeling in his hands over the last few months, hands that crafted everything from sturdy tree forts with his older brother to delicate raku vases in his Sophia Street pottery studio.

He walks with considerable effort, his weakened legs occasionally buckling under him unexpectedly.

And he's fallen on the stairs in his home several times, giving himself a perpetual bruise on his left knee.

He and his wife, Trista, vowed early on to fight the paralyzing disease, and they made good on that pledge, enrolling Chapman in a drug trial at the University of Virginia, turning to yoga and meditation to raise his energy levels, loading up on healthy foods and even pursuing alternative diagnoses.

Despite their efforts over the last year and a half, Chapman didn't get better.

His grip loosened, and he no longer trusted himself to help Trista with her pottery.

His speech slowed. Getting in and out of bed, in and out of the shower, became a struggle.

Late this summer, he and Trista made a decision: No more expensive, alternative treatments. No more fistfuls of pills each day.

No more drug trials. No more blood samples, urine tests and toxicology reports.

"Everything I have had has been stereotypically ALS," Chapman said.

ALS attacks the nerve cells in the body's brain and spinal cord, ultimately destroying a person's voluntary muscle movement. While the patient's mind remains sharp, the disease robs the body of its ability to move, speak, swallow and even breathe on its own.

At one point, Chapman had tested positive for Lyme disease and for high levels of lead in his blood--both conditions more treatable than ALS--and he briefly hoped the original diagnosis was wrong.

But the dietary supplements, antioxidants and vitamins he took to boost his immune system and flush contaminants from his body never made him feel any better.

In August, Chapman began using the manual wheelchair to get around his Sophia Street pottery studio. In October, the Virginia chapter of the ALS Association loaned him an electric one to use in his home next door.

"I can still walk somewhat. It's just really a matter of saving what's left," he said recently. "The bottom line to all this is you lose it eventually.

"I've gotten everything in order and I'm ready to let it all go if I have to," he said.

But a moment later, the fight's back in his voice.

"You never know what life is going to be like," he said, "but I have a feeling my life is going to be very long, just very difficult."

A helping hand
On good days, Chapman spins around the second-floor of Sophia Street Studios, answering the constant ring of the phone, getting after their dog, Abbey, and offering technical advice--both solicited and otherwise--to Trista and newest arrival, Daniel Christie.

"I tell them what they're doing wrong," Chapman said with a sly smile.

Christie, 24, was a student at Penland School of Crafts in North Carolina in the spring when he studied under local potter Dan Finnegan, founder of LibertyTown Arts Workshop in Fredericksburg.

Finnegan offered Christie a job at LibertyTown and, in August, introduced him to the Chapmans as someone who could help with their Sophia Street pottery operation.

In return for studio space and round-the-clock advice, Christie has spruced up the pottery shop, helped Trista with her work and drafted plans to start selling the shop's artwork online.

"He's just been a blessing," Trista said.

Chapman had stopped firing his own labor-intensive pieces last December, and the gas kiln he'd built for himself sat dormant for nearly a year.

On Nov. 29, Christie cranked it up to 2,400 degrees, firing a batch of his own creations.

"Phil built the best kiln I've ever used," said Christie, who soaks up the couple's expertise.

"A lot of energy comes off Phil and Trista when they're together. We've gotten to be pretty close," he said. "We're always laughing."

Still, there are plenty of days when it's difficult to stay positive. One recent afternoon, Phil slipped and fell on the stairs that lead from the pottery studio to their backyard.

Trista couldn't lift him, but Christie scooped him onto his feet again. Since then, Christie said he tries to watch out for Chapman, especially when he's climbing stairs.

A donated lift, once it's hooked up, will help him get into the studio without using steps. And Chapman plans to start sleeping on the first floor of the house, once he's picked out a comfortable bed to put down there.

"That really upset me," Christie said of Chapman's fall. "I keep as much an eye on him as possible. But he doesn't want that. He wants to be able to do for himself. It's maddening for him."

It's maddening for Trista as well. Her inability to help him has brought her to tears more than once.

"I've never been involved in something like this where there's no hope," she said on a particularly difficult day. "It's not like saying, 'If we just get through this, it'll be all right.' It's never going to be all right."

Fighting exhaustion
The Chapmans helped start the Empty Bowl fundraiser in 2000 on behalf of the Rappahannock Council on Domestic Violence.

The eighth annual event next month may be the first that neither attends.

For Chapman, going out has become physically and mentally exhausting.

"A lot of times I feel tired, and I haven't done anything," he said recently. "I can hardly sit up sometimes."

For Trista, it's emotionally draining. She went to a party earlier this year with some friends.

"I was looking forward to it for weeks. Did my hair and everything," she recalled. "But when I got there "

Naturally, she said, everyone asked after her husband.

"And I didn't have anything good to say," she said. "And then the tears were streaming. We do feel really, really lucky because we have so many wonderful friends, but it's hard."

More than 300 supporters attended a fundraiser for Chapman and a retrospective of his work in January, an event that raised nearly $60,000 for his care--money that's becoming more important as his mobility diminishes.

This summer, his friend John Stoddard organized a fundraising picnic at his home in Corbin, attended by a large group of old friends.

About 30 friends and family joined the couple in October for the Walk to D'Feet ALS in Richmond. Their team, Flippy's Fans, after Chapman's childhood nickname, raised about $6,500 for ALS research.

Chapman said he tries to read up on stem cell research and he's encouraged by the national effort to find a cure for the disease.

"I just hope they hurry up," he said.

In his lowest moments, he considers how fortunate he is.

As difficult as the last 16 months have been, he said, he can't imagine having gotten this far without his wife, his family, his friends and the network that has supported him.

"I'm so privileged. I can't feel bad about things. I always come back to that," he said. "I have it pretty good. For what's happened to me, I have it pretty good."


To reach EDIE GROSS:540/374-5428
Email: egross@freelancestar.com

http://fredericksburg.com/News/FLS/2...2172006/243766

[BobbyB]

SEARCHING FOR answers

A new diagnosis gives local potter Phil Chapman hope

Date published: 6/11/2006
http://fredericksburg.com/News/FLS/2...ex_html?page=1

Story by EDIE GROSS Photos by SUZANNE CARR ROSSI


THE SETTING was a familiar one for Phil Chapman--another doctor's office, another round of test results.

After listening to a barrage of information on his latest blood work, Chapman asked his physician to break it down for him.

"So when I talk to my mom tonight, what do I tell her?" asked Chapman, a Fredericksburg potter for 30 years.

"You tell her you've got Lyme," his doctor answered.

For many, the diagnosis would be discouraging. Lyme disease, a bacterial infection transmitted by ticks, can cause a range of problems, from fatigue to crippling joint pain.

But for Chapman, the news was a second chance.

Only seven months earlier, he'd been told he had ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

The pace of ALS varies as it robs its victims of their ability to move, speak and even breathe on their own. But the end result is always the same: death.

The Free Lance-Star chronicled Chapman's condition in a story in December, just before the community gathered for a fundraiser and retrospective of his work.

Now, in February, he was looking at a different, more hopeful diagnosis.

The news didn't mean he didn't have ALS. Some patients, as unfair as it may seem, can suffer from both ALS and Lyme.

But maybe, just maybe, Chapman hoped, the muscle weakness and fatigue he'd been feeling for more than a year were from Lyme, a condition far more treatable than ALS.

On top of that, his doctor informed him that he had high levels of lead in his body, which also could be contributing to his illness. That, too, could be treated.

That evening, he and wife, Trista, toasted the news with champagne.

"We learned all about ALS. Now we have to learn all about Lyme," Chapman said at the time. "Back to the Internet."

Since then, the overnight recovery he had hoped for hasn't materialized.

He's still tired. His right side has weakened, and he loses his balance more easily. His speech has slowed.

The frustration he and Trista feel has been compounded by the amount of conflicting information available on Lyme disease and its relationship--or lack thereof--to ALS.

Chapman's read a stack of books on the subject and pursued a host of traditional, alternative and homeopathic remedies over the last four months.

"I'm supposed to be learning something about patience, but I'm antsy," he said. "I want to get back to work. I want to be what I was."

He gave up creating his signature raku pottery because his condition made the labor-intensive work too difficult.

Instead, he collaborates with Trista, who is also a potter, on some of her work.

He gets impatient with himself, Trista said, and it's hard to watch.

Some days, he's just not Phil at all, all day long, and it wears me out," she said. "I know how much he wants to be here, and it breaks my heart to see him failing."

However, she said, his impatience is what fuels his fight.

Though it remains unclear whether Chapman has ALS, Lyme, both or neither, what he does have is hope.

"Phil's not a giver-upper," she said.

Nothing to lose, lots to gain
When Chapman was diagnosed with ALS in August, he pledged to do all he could to fight the disease that paralyzes its victims.

He joined a drug trial at the University of Virginia, started practicing yoga and meditation, and underwent biofeedback, a sort of relaxation therapy to help him channel positive, healing energy.

Though there is no cure for ALS, Chapman hoped his efforts would slow its progression.

His response to the Lyme diagnosis has been just as aggressive. And this time, the reward--the potential for restored health--is far greater.

Chapman reasoned that if he did indeed have Lyme disease, it was advanced and beyond the reach of antibiotics. But, he concluded, if he could boost his immune system with dietary supplements, antioxidants and vitamins, he might be able to fend off the infection. His strict regimen includes swallowing at least 14 pills a day.

He also purchased a Rife machine, an electronic device the size of a toaster. The theory behind the machine, which is not FDA-approved, is that it emits a frequency that can shatter disease-causing organisms in the body, like the bacteria responsible for Lyme.

Chapman's doctor warned that Trista also may have Lyme, so every 10 days the two of them sit in front of the Rife machine for 15 minutes at a stretch, adjusting the frequencies and noting their reactions.

The device, which has its roots in early 20th-century medicine, purports to treat every condition from dullness to bubonic plague, and has on occasion popped up on QuackWatch.org, a health fraud Web site.

Chapman's theory: If it doesn't hurt him, why not try it?

"It's all just snake oil," he kidded one day before a Rife session.

"Don't say that," Trista chided. "Part of it is believing in it. You have to believe you'll get better."

Fredericksburg resident Frances Bishopp knows Chapman's frustration all too well.

She was bedridden, suffering from fatigue, lower back pain, dizziness and vision problems for a year before doctors diagnosed her with Lyme disease.

Seven months of intensive antibiotic treatment made the Fredericksburg resident feel even worse, so she tried using a Rife machine. She still suffers serious bouts of vertigo, but is able to leave the house.

"I'm far from saying Rife has cured me, but a year ago this time, I was in bed and now I'm not," said Bishopp, who introduced Chapman to the device. "And that's how you have to look at it."

Bishopp met Chapman after a friend of hers read about him in The Free Lance-Star and thought his symptoms sounded similar to Bishopp's. She urged Chapman to get a Lyme test.

"I think he was at a point where it seemed like a good idea and why not try it," she said. "He'd been given such horrendous news by everybody else."

'Desperate and rightfully so'
In most cases, ALS and Lyme disease should behave differently, doctors say.

While ALS causes a progressive weakness in the body, Lyme is more likely to start with a rash, headaches and aching in the joints, sometimes misdiagnosed as arthritis.

However, if the bacterium that causes Lyme got into the spine, it could mimic symptoms of ALS.

It's rare, but possible. And since there's no one test that identifies ALS--rather, it's diagnosed through a process of elimination--plenty of ALS patients pursue a Lyme diagnosis.

Such is the case at the Methodist Neurological Institute in Houston, said Dr. Ericka Simpson, co-director of the hospital's MDA/ALS Clinic. Physicians there try to be supportive of their patients' efforts--to a point, she said.

"Our patients are desperate and rightfully so, and we try to be very open to them seeking alternatives," she said. "If it doesn't hurt you physically, emotionally and financially, then sure."

Chapman's first Lyme test, done just before doctors at VCU Medical Center in Richmond diagnosed him with ALS, did not detect any infection. But the new one, sent to a lab in California, came back positive.

Three months later, Chapman said he still feels as sapped as he did when he had only the ALS diagnosis.

Then again, any time he feels well he goes to work, either helping Trista at their Sophia Street Studios pottery shop or researching his condition.

"I am starting to try to be more active, and that might be knocking me right down," he said. "So if I'm feeling better I might not know it."

He'd love a full recovery, but he's not unrealistic about his chances either.

"I'm still heading downhill. This [right] arm is smaller than this arm. This arm is still getting weaker," he said recently, shrugging.

"Maybe I have ALS."

Confusion and hope
Chapman isn't the first patient to bounce between two such diagnoses.

Lyme disease has been known to mimic any number of disorders--among them multiple sclerosis, fibromyalgia, chronic fatigue syndrome and even ALS.

A quick Internet search turns up plenty of anecdotes about folks diagnosed with one and then another. There's even the suggestion that ALS is merely advanced Lyme disease, a theory not supported by mainstream medicine.

A thorough medical exam should differentiate between the two diseases, doctors say.

ALS affects the upper motor neurons, nerve cells running from the brain to the spinal cord, and the lower motor neurons, which run from the spinal cord to the muscles, said Dr. Stephen Scelsa, director of the neuromuscular division and the ALS Center at Beth Israel Medical Center in New York.

An ALS patient should experience progressive weakness, usually starting in the hands or feet and spreading to the rest of the body, said Scelsa, who is also an associate professor of neurology at Albert Einstein College of Medicine in the Bronx. Symptoms could also start in the tongue or swallowing muscles, he said.

Someone with advanced Lyme disease would experience pain in the joints, arms and legs, more like arthritis than a weakness, he said.

"On the Internet, the association [between Lyme and ALS] is certainly exaggerated," Scelsa said. "I think there are very, very rare circumstances where there can be confusion, but almost never."

In Chapman's case, he was exhausted all the time and his right foot began to drag inexplicably. Eight months later, after ruling out a number of other illnesses, doctors gave him the ALS diagnosis.

In very rare cases, a patient has been diagnosed with ALS and then discovered to have been suffering from Lyme instead, said Dr. John Halperin, a neurologist at Overlook Hospital in New Jersey, who has studied patients with both conditions.

Some of the confusion rises from the Lyme tests themselves.

In the early stages of the infection, the body hasn't necessarily had enough time to produce measurable antibodies, so a test could come back negative even when the patient has Lyme.

Likewise, a positive test may mean the patient was once exposed or had Lyme previously, but not now, Halperin said.

Furthermore, some clinics--including the California lab that gave Chapman his results--have been criticized for not following guidelines set up by the Centers for Disease Control and thereby turning out too many positive Lyme tests.

Their defenders insist the federal protocols fail to recognize Lyme disease in many who are sick.

Said Chapman: "I feel like we're learning along with the doctors."

Regardless of what disease a patient has, it's important that he maintain a positive attitude, said Simpson of the Methodist Neurological Institute in Houston.

"The patients who do the best are the fighters," she said. "They already have decided that they're not going to let this disease defeat them."

One of Chapman's doctors at U.Va. did not support his decision to pursue Lyme treatments, so Chapman is no longer part of the ALS drug trial there.

However, he recently returned to U.Va. to see a toxicologist about his lead levels. And he's considering a trip to a clinic in Philadelphia that has treated patients with ALS, Lyme disease and heavy-metal exposure--all potential issues for Chapman.

On his down days, he said, he tries to focus on what he still can do.

"I am thankful. I can still raise my arm, use a pen. I am thankful," he insisted. "But I want more. I want to be normal."



To reach EDIE GROSS:540/374-5428
Email: egross@freelancestar.com

http://fredericksburg.com/News/FLS/2...ex_html?page=1