B-ton FP May'99

 

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A healing circle, Vermont family turns to community in battle against Lou Gehrig's disease, Burlington Free Press, May 31, 1999.  by Anne Wallace Allen.

 

    The family and friends of Curtis Vance of Danville first felt a hint of the trouble to come last summer, when his legs started to lose their strength.  For Homer Fitts, 72, it was the September day he and Vance, 25, helped a neighbor harvest his corn.  Vance was driving the truck.
    "His legs were getting weak," said Fitts, a longtime friend of the family.  "Someone else had to get out to open the gate because he couldn't get up."
    Fitts knew there must be something seriously wrong, but he had no idea what it was.
    Vance himself had noticed the weakness a month before, in August, when he found he was struggling to carry some building materials up a step.  He and his girlfriend, Heidi Erdmann, assumed he'd been getting too much sun, or too much exercise.  They both had.  He was working 12-hour days at his job at IBM, and on his days off was doing construction with his friend Jon Webster.  She was working as an assistant tennis pro at the Basin Harbor Club in Ferrisburgh.  They thought if it wasn't just plain fatigue, it might be a reaction to some pork he'd eaten at a barbecue.
    But as the summer passed into the fall, Vance kept getting weaker.  He started visiting doctors for the first time in his life.  The doctors thought it might be trichinosis, too, from the pork.  But they weren't sure, and they sent him to other doctors. 
    "Every day was a little bit worse," Vance said.  "The next thing you know, you're walking funny, you're walking with a cane.  It's scary."
    Vance started using a walker.  By November, he was going to bed at 7 p.m. and sleeping right through the night.
    Erdmann was sure there was an answer to their questions about his weakness.  A Middlebury College graduate who coached the men's tennis team there, she was determined to find a solution.
    "I would get up and search the Internet, and search, and search," said Erdmann, 24.  "I'm a very inquisitive person and I like to know what's going on."

'Like a death sentence'

   What she found out was information about amyotrophic lateral sclerosis or ALS, also known as Lou Gehrig's disease, a paralyzing and fatal motor neuron disorder.  ALS is very difficult to diagnose, and doctors probably don't want to make the diagnosis, said Erdmann.
    "It's like a death sentence," she said.
    But not to Erdmann and Vance.  Knowing there is nothing medical science can do, they are now seeking to harness the healing powers of their community.  This spring, the couple started holding weekly healing circles at their house in Danville.  Neighbors and friends come to offer whatever help they can.
    ALS is a neurological disorder that starts as muscle weakness and leads to paralysis.  While ALS sufferers cannot move the affected areas of their bodies, but their intellectual functioning remains intact.  In Vance' case, the paralysis started in his legs, has partly affected his arms, and is now hindering his breathing.  At night, a machine helps him breathe.  He gets around in an electric scooter that he refers to as his "big rig."
    Half of all ALS sufferers live at least three or more years after diagnosis.  Twenty percent live five years or more; up to 10 percent will live more than 10 years.
    Although nobody knows what triggers ALS in people who are carrying the gene, anyone with the gene can expect to get it sometime in their lifetime, said Diane McKenna-Yasek, an ALS research coordinator at Massachusetts General Hospital in Boston.  Ninety percent of ALS is completely random, with no genetic basis.

A family history of ALS

    In Vance's case, the genetic basis was strong.  It goes back 200 years, although that long link was not evident at first.
    The tragic history tumbled out over time from various sources.
    Vance's grandmother died in the 1960's, at the age of 39, of a fast-moving disease then called progressive bulbar palsy.  Another aunt died of something then called spinal muscular atrophy.
    Vance's mother, Linda, had heard there was a family disease, but she didn't know what it was or what the likelihood was that she carried it.  Her own mother didn't tell her.  Her aunt died of it at 49. 
    "My whole life has been under this black cloud over my head because of this," said Linda.
    The family called Massachusetts General Hospital, and spoke to McKenna-Yasek.  Linda Vance knew her great-great-great grandfather, Samuel Farr, had died of ALS at the age of 42 in 1865 in Newark, Vt.  He was ill with it for two years.
    They learned that McKenna-Yasek already knew about Farr and Linda's family; the hospital had a thick sheaf of documentation on the generations that had left the Danville area.  They learned Farr's brother and sister had also died of ALS, at ages 50 and 54. 
    Of Farr's eight children, four died of ALS - one daughter at age 27, said Erdmann.
    "It's a fairly incredible family as far as the history goes," said McKenna-Yasek.  "This family Farr was actually recorded in the medical journals in the 1800's."
    After the diagnosis, Vance and Erdmann had a hard winter.  As Curtis' condition deteriorated, doctors put a pump into his spine, to administer an experimental medication.  He was flat on his back for weeks, and the surgery gave him blinding headaches.
    Erdmann left her job and the couple moved out of the apartment they shared in New Haven to Vance's home town of Danville, where his uncle Hollis had recently built a house for his retirement.  Vance and Erdmann moved into the house, and his uncle and aunt stayed where they were.

Community support

   "Yes, it's incurable.  But we can go past that," said Erdmann, who first met Vance when she visited her grandparents each summer in Danville as a teen-ager.  The two started dating when she was in college.  "We've really learned how to surround ourselves with positive people."
    And they asked for the community to join them for healing sessions.
    The healing circles are cheerful occasions.  The neighbors crowd the side table with banana bread and brownies and stand around in the living room swapping greetings and anecdotes.  Many are the age of Vance' parents, and remember Vance as a newborn baby.  They often speak of his mother's pride in him.  Some have been in Danville for so long they remember Vance's parents as children.  Old friends joke with his father, who served in the Legislature for 10 years.
    The healing circle is an organized event that lasts an hour.  A facilitator, Diana Webster, leads the 25 or so participants through breathing exercises, directing them to send positive energy toward Vance.  In one part of the evening, the group touches Vance to send the energy through their hands.  She asks people to think of Vance and Erdmann in positive, happy, healthy times.
    Some of the people at the circle wholeheartedly believe in energy healing and have done it before.  Others are deeply skeptical but they want to help in any way they can.
    And all of them say it helps them to visit Vance and Erdmann and to show their love and support.
    "This disease just makes me feel powerless, absolutely powerless.  This is one way of getting some kind of power," said Jenness Ide, who remembers Vance as an infant.
    Erdmann, who has invited everyone in town to the healing circles, whether they know Vance or not, didn't ask everyone to be positive, but they are.  She is too.
    After all, doctors have no idea what triggers ALS, either in people who carry the gene, or in people who don't (about 90 percent of all ALS sufferers).  It seems completely random.  With that much mystery around it, there's no reason to believe it can't be beaten, Erdmann said.

Seeing the bright side

    As for Vance, he says he has a peace of mind that he didn't have before.  Now that he's not working as many hours as he can to earn as much money as possible, he finally has time to spend with Erdmann, reading, talking, or just hanging out.  Both of them say their relationship has blossomed in a way that would have been impossible within the limits of their old schedule.
    Vance still wishes they could go back to the initial diagnosis, of trichinosis.
    But Fitts has adapted his dock and his boat so Vance can get out on Joe's Pond with him to go fishing this summer, and he's looking forward to that.
    And he's noticing the beauty of the rural Northeast Kingdom town where he grew up for the first time.
    "We've get these beautiful mountains," he said.  "I've lived here my whole life, and I saw them, but I really never noticed them and their beauty.  Now I do all the time."

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