Monday, October 30, 2006

Making a difference in Farmington, Bloomfield and beyond


Jeff Blick, originally uploaded by rsdscrpsnews.

Making a difference in Farmington, Bloomfield and beyond

By Cory Frolik The Daily Times
Article Launched:10/29/2006 12:00:00 AM MDT

FARMINGTON —
Anita Liston and her husband, Charles, pay $174 a month on heating bills.

They are on the budget plan and must pay that amount each and every month, even during the summer.

Liston, 69, of Farmington, said she lives on Social Security and needs to know exactly how much the bills will be. Otherwise, she said, a bill for $250 one month could place a financial burden on the couple beyond their means.

The temperature in the Liston house during the winter is a steady 72 degrees. Charles has medical complications, including emphysema and reflex sympathetic dystrophy, a chronic pain condition that is thought to be the result of dysfunction in the central or peripheral nervous systems. The house has to be kept at a constant temperature because cold air can have adverse effects on his condition.

Cold air can sneak into households through structure holes or little cracks in the siding, said Jeff Blick, a student with the Renewable Energy program at San Juan College. Unless something is done about such openings, air will infiltrate into a home and heaters will have to be kept on longer to keep a house warm.

Fortunately for the Listons, Blick and dozens of others had an afternoon to spare.

Make A Difference Day was Saturday and in Bloomfield, Aztec and Farmington, volunteers saw to it that many local homes were better prepared to keep out the cold. Blick joined volunteers from the college, AmeriCorp and local communities to help winterize more than 23 households in the three cities. Saturday morning, the group was busy working on the Liston home.

Make A Difference Day is a national day of helping others. It is one of a number of community service days scheduled throughout the year.

Larry Palmer, with the San Juan College Volunteer Center, the organization that helped arrange the event, said the aim of Make A Difference Day is to do something positive for individuals who could use a little extra assistance.

"We're doing it for people who are low-income or senior citizens who don't have either the money to buy the stuff or the physical ability to do it. With the people who live here," Palmer said gesturing toward the small, wooden Liston house, "the man is seriously disabled and really can benefit from our efforts."

Three teams in each city were given checklists to follow in order to ensure heating systems were in place and dwellings were adequately sealed and insulated.

The volunteers sealed the leaks, added insulation to walls and ceilings, considered replacing fixtures where needed, and cleaned heaters and ducts. These measures, though simple, can make any home more energy efficient.

The group also installed window kits over glass panes and caulked openings on doors and other spots where cold air could infiltrate the homes.

"It can make a pretty tremendous difference actually," Blick said. "I can't (say) exact numbers, but I bet if you do this to your house, and you pay attention to detail — seal up every window and caulk outside — you can probably save between $20 to $50 a month, depending on the size of your house."

Liston said large, gaping cracks in her exterior wall have appeared in the last several years because of an increase in the amount of industrial traffic on West Arrington Street, where she lives.

Liston said she despairs of the traffic and the damage it causes to her home. The more cracks in her home means the more cold air that gets in. The more cold air that gets in, the more heat she uses. The more heat she uses, the more her monthly heating bill goes up the next year.

"My house is falling apart," she said. "When you live on disability or Social Security, it's not like I can go out and get a job (to get money to fix it)."

The Listons say they are used to living on $1,500 a month. They are living on a little bit more than that at present, but times are still tough.

Liston, who said she does a great deal of volunteering, expressed a great appreciation for the work being done to her house.

She said it went against the current trends in life that "all people do is take, they don't give.

Making a difference

in Bloomfield

Some 10 miles away at that very moment, there were other people giving in Bloomfield.

At Mesa Alta Junior High School, more than 100 individuals of all ages sat down and put pen and pencil to paper in an effort to send some comfort overseas where it is needed most.

The idea of sending troops care packages for Make A Difference Day originated with Mesa Alta Junior High School English teacher, Trudi Pierce. She had engaged in a similar activity before and knew what a positive experience it was for both the people who prepare the packages and the soldiers who receive them.

For soldiers, these letters remind them why they are serving their country, said Diana Schneider of VFW Post 2182 in Farmington. For the troops thousands of miles away in hostile territory, letters and packages make life a little more bearable.

This is where the children of Bitzi Seitzinger's class enter the picture.

Students of the Math Engineering Science Achievement (MESA) class, an elective course offered at the school, hosted an event in the Mesa Alta Junior High School gymnasium Saturday morning where visitors were asked to write letters and put together care packages for members of the United States military. The packages will be distributed to U.S. soldiers stationed in Iraq.

Hannah Notah, 14, a student of the MESA course, explained why the students chose this as their service project.

"We're honoring and recognizing the men and women in the service, because they can make a difference," she said. "We're also collecting items they can use."

The Blue Star Mothers, a support group for wives and mothers of soldiers, provided a list of things that would be helpful to soldiers such as snacks, cameras, health care products, dried goods, white socks and other comfort products.

Schneider said the largest youth activity put on by the VFW is having children write letters.

"We decided that this would be a great way, not only to get our children involved in a writing project, but get it extended to the community," she said. "It is very emotional for (the soldiers) to receive goods from people they don't even know. To know they appreciate them and value what they're doing for the service of our country."

Many of the children in the MESA class have direct ties to the troops.

"I've got a dad, a brother, an uncle and a cousin in the service. My dad's over there right now," said Hassan Yassien, a student of the MESA class.

While overseas, Yassien's brother relied on letters from his family for comfort. He kept them all and has read and reread them 10 times over.

It reminds him that people at home care about him, Yassien said.

At least four of the soldiers that are to receive letters are former students of Mesa Alta Junior High.

"Some of the soldiers were in our class before so we wrote personal letters," she said.

Yet, many visitors had no personal connection to the soldiers. They just wanted to show their support to soldiers who they didn't know, but wanted to send a greeting to.

Twelve-year-old Joshua DeLeon said he was sending 15 letters because it is "15 times the support of one letter."

"My name is Joshua and I am a 12 year old boy in the 7th grade. ... I wanted to write a letter to a soldier rather than spend the day watching T.V.," his letter began.

DeLeon agreed that a little support can go a long way.

Cory Frolik: cfrolik@daily-times.com





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Monday, October 23, 2006

Why do females feel more pain than males do?

Why do females feel more pain than males do?

Study after study shows it's true, but scientists cannot explain what's to blame for this gender gap

ANNE MCILROY

From Monday's Globe and Mail


The pain starts after a trivial injury, a scraped knee or even a paper cut, but endures or intensifies long after the original wound has healed.

Even a light breeze or the touch of a bed sheet can be unbearable for patients with the rare disorder known as complex regional pain syndrome, which affects far more girls than boys, and significantly more women than men.

No one knows why, says Steve Brown, a doctor who treats chronic pain at the Hospital for Sick Children in Toronto. He sees seven or eight girls with the disorder for every boy with it.

"I don't think anyone has a good answer."

The question is part of a larger mystery, one that intrigues researchers as they work toward a more profound understanding of the biology of pain. Why is it that females feel pain more than males?

Study after study -- most of them done in adults -- show this is the case. Women yank their arms out of icy or hot water faster than men, or report significantly higher levels of pain than men from the same mild electric shock. The difference isn't huge, but it is significant.

This might come as a surprise to many women, especially those who have been through labour.

But scientists have moved beyond documenting the phenomenon to explaining it. They are now zeroing in on different genes, pain mechanisms and pathways in women and men, and on the role that sex hormones play.

One day, they hope to be able to tailor pain relief for men and women - blue pills and pink pills. Their work could lead to new treatments for chronic pain conditions, such as complex regional pain syndrome, that affect more women then men. In adults, the literature suggests two women get it for every man.

It is unclear how early the differences begin. There are studies that suggest girls are more sensitive to pain than boys are, although the research is not as conclusive as in adults, says Patricia McGrath at the Hospital for Sick Children. She and Dr. Brown are part of research project studying a number of chronic pain conditions -- including complex regional pain syndrome and headaches -- that seem to affect girls more than boys.

By adulthood, experts say, almost every chronic pain condition is more prevalent in women than in men.

Hormones are part of the explanation, says Serge Marchand, a researcher at the University of Sherbrooke. Female rats have more intense reactions than males to the same painful stimulus, like an electric shock. But if you remove their ovaries and testes, so that they don't produce sex hormones, then males and females respond the same way.

Why?

Dr. Marchard thinks hormones might affect the body's built-in ability to mute pain. Both mice and humans have systems that regulate pain, natural opioids, cannaboids and other neurotransmitters. They allow people to function despite injury or illness.

He asked female volunteers to come to his lab three times in a single month, so he could test the effectiveness of their natural pain-killing systems at different times in their menstrual cycle.

First, he administered a mild electrical shock on their left legs, and asked them to rate the pain on a scale of one to 100. Then he asked them to put their right arms into water chilled to five degrees Celsius.

The cold triggered natural pain control. Previous experiments have shown that when volunteers are then shocked a second time, they report significantly less pain. The body's response to their freezing arm makes their leg less sensitive to being zapped.

But as Dr. Marchard discovered, and reported at a conference in Oregon earlier this year, there were big difference in natural pain control, depending on where a woman was in her monthly cycle.

When women were ovulating, and had high levels of estrogen, they reported as much as 70 per cent less pain after the second shock. But if they were menstruating, and had low levels of estrogen, they reported as little as 30 per cent less pain.

Men, however, don't have these kinds of ups downs in pain modulation, although there is evidence that testosterone, a male hormone, plays a role in pain tolerance.

Hormones, however, are only part of the pain picture. Our genes might also explain why women feel pain more than men do.

A number of researchers have found evidence that men and women control pain in different ways. Male mice, they have discovered, have a natural pain-control system that females don't have. The key to the system is a protein called GIRK2, which plays a role in communication between cells.

Jeffrey Mogil, at McGill University in Montreal, has found that a gene that causes red hair and fair skin also plays a role in how some women -- but not men -- respond to painkillers.

This means the neural circuits involved in inhibiting pain are different in men and women, he says.

"The idea was pretty radical even 12 years ago. It is really starting to be believed now."

There is no big picture yet, just hints that genes involved in pain for one sex aren't important in the other.

"It is not too hard to convince yourself that there may have been separate adaptive pressures that would have led to the development of different circuits," he says.

Men would have benefited from a system that allowed them to deal with traumatic pain to the skin, whereas women would have benefited more from a system that helped them endure more visceral pain, like childbirth.

It is fun to speculate, says Dr. Mogil, but these kinds of theories are impossible to prove.

Dr. Marchand has come up with one to explain why women would have evolved to have the most natural pain control when they are ovulating, which is not painful, and the least when they are menstruating, which can involve pain.

It seems unfair. But for many animals, he says, sex is painful. So it makes sense to have a system that provides maximum pain control when intercourse is most likely. "Otherwise they would never have offspring."

Maybe we inherited this system, he says.




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Tuesday, October 17, 2006

ONLY 25 SPACES LEFT FOR RSD CONFERENCE ON NOVEMBER 3rd AND 4th, 2006

ONLY 25 SPACES LEFT FOR RSD CONFERENCE ON NOVEMBER 3rd AND 4th, 2006

Here are the basics for you!

Cost is only $65 per person


WHAT DOES THAT INCLUDE?


It includes the Workshops on Friday and the main Conference on Saturday. It includes sandwiches/chips/drinks/etc. on Friday night for those arriving before the Workshops It includes a buffet breakfast on Saturday as well as a hot/cold buffet lunch and snack breaks! It also includes all of the hand-outs, work-sheets, and even a free copy of the book " PERSISTENCE IS POWER, A REAL WORLD GUIDE FOR THE NEWLY DISABLED WORKER" By Jeanne Lazo and Carol Amato. In addition, there will be some giveaways including over 20 books dealing with Coping with Chronic Pain!

You can register for the conference by going to our website, or by calling our office at 207 583 4589. WE STILL HAVE SOME SPOTS LEFT BUT THEY ARE GOING QUICKLY!

We have some fantastic speakers too;

Doctor Ronald Harbut who, with Doctor Correll, developed the low-dose ketamine infusion method to treat RSD, will be presenting the latest information on ketamine and RSD as well as his latest patient treatment results. He will also present an overview of exactly how ketamine works with RSD to decrease the pain. Doctor Harbut has had papers published in peer-reviewed journals like the Journal of Pain Medicine and recently spoke at the AAPM's national meeting in San Diego, CA.

Doctor Allan Chino, author of "Validate Your Pain!: Exposing the Chronic Pain Cover-Up", will be focusing on "Beyond the Biomedical: Chronic Pain as a (Hidden) Signaling System". Currently in private practice near Portland, Oregon, Dr. Chino, Ph.D., ABPP is board certified in Clinical Health Psychology and Past President of the American Academy of Clinical Health Psychology. He serves on the Oregon Pain Management Commission which is charged with providing the legislature with recommendations for improving and removing barriers to the provision of effective, high-quality pain management services.

The conference will begin with Keith Orsini, one of the Directors of American RSDHope, as well as a 32 year survivor of RSD. Keith will be speaking about "Living Beyond Your Pain", focusing on how to live the life you want in spite of the pain. In our daily battle with pain we lose a little ground every day and in doing so we lose a little bit of ourselves. Pretty soon the life we have left isn't much of a life and is nothing like the life we wanted or intended for ourselves. Keith is going to show you some ways to change that!

There are also workshops on Friday evening, one for patients led by Doctor Chino and one for Loved Ones and Friends led by some of our Loved Ones! Medical professionals are free to attend either workshop of course.

And don't forget, the RSD Documentary film crew will be there doing interviews on Friday!

So if you had thought about coming to an RSD conference, this is the year to come. This is going to be the best conference we have ever had and we have had 8 others before this one! American RSDHope will not be holding a conference in 2007 and probably not in 2008 either so don't put it off until next time!

The weather is not bad the first weekend in November here, about 50 degrees during the daytime, besides, you will be indoors! Drive up and see the foliage along the way! Or fly in, Portland Jetport services many Airlines including the discount airline JETBLUE! You can even take Amtrak to Portland now!

Check out all of the details by going to our conference webpage;

http://www.rsdhope.org/ShowPage.asp?page_id=48

Or you can call our home office at 207 583 4589

Don't delay folks, it is getting down to crunch-time!

Only $65 per person!

Please spread the word to your groups, fellow patients, Doctors, friends, listservs, email lists, etc. We would greatly appreciate it. We expect a full house again this year, 200 attendee's, and we are almost there already so get your registration in quickly!



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AMERICAN RSDHOPE ANNOUNCES $7,500 DONATION TO ORGANIZATION MAKING RSD DOCUMENTARY!

AMERICAN RSDHOPE ANNOUNCES $7,500 DONATION TO ORGANIZATION MAKING RSD DOCUMENTARY!

In what they hope will just be the first of many organizations to donate, the American RSDHope Board of Directors approved a donation of $7,500 this month, September 2006, to the RSD Aid & Awareness Organization to be used for their upcoming Documentary on RSD.

You can read all the details about the donation and about this new RSD Documentary on our website;

http://www.rsdhope.org/ShowPage.asp?page_id=156

Here are some of the details!

Barry Adler and his wife formed a non-profit organization called RSD Aid & Awareness to raise funds to film a documentary on RSD. Barry's wife was diagnosed with RSD over a year ago. Barry happens to own a production company called Impactmedia and has an extensive background in media presentation having produced everything from feature films and television series to commercials and medical films. He and his wife soon learned what we all do, that very little seems to be known about RSD and so he was driven to do this project.

His plans are to film a documentary, take the moviegoer on a journey through the land of RSD through his eyes. He will also be interviewing other patients, their loved ones, Doctors, medical professionals, etc. He plans to bring the finished product to the various film festivals and eventually get it out to theaters across the US, Canada, and eventually ending up on television; possibly HBO or the Discovery Channel for instance.

it is an ambitious project and many of us in the community have talked about the need for just such a project for years but haven't had anyone with the knowledge or tools to get it done. Now we do. Now it is up to the community to step forward and put the funding in place to make sure this gets done. It will take a great deal of money to be sure. $7,500 is only the beginning.

American RSDHope is hoping other Organizations; RSD, Pain, Disability, whatever their affiliation, will step forward and match or beat our donation!

If you run a support group and have the finances, see if you can match it. If you need to, work with another group or two or ten to match it. Hold fundraisers!

Or just donate what you can, $1000, $500, any amount. Write to your local Masonic organizations, Lion's Clubs, or whatever fellowship organizations are active in your area and see if you can get them interested. Talk to your local newspaper and television station. Barry Adler will be more than happy to talk to anyone at anytime about this project if it will raise the awareness level of it and bring in some more funding.

In October, down in Fort Lauderdale, FL, they will be holding a large fundraiser for the RSD Aid & Awareness organization to raise money for the documentary. If you are down there, stop on by. I will share details on it in the coming weeks.

Barry will be bringing his camera crew to American RSDHope's RSD Conference in South Portland, Maine on November 3rd and 4th to tape some patient interviews and film parts of the conference for the documentary. If you haven't already made plans to be there we still have about 60 spaces left but they probably won't last past the end of the month so register quickly. It is going to be our best conference yet by the way with some amazing giveaways as well as the latest information on Ketamine and RSD and we will be sharing ways to ease your pain, always a good thing!

So please help us spread the word on this project! Stop by the website and learn all about it. Go to the link shown above and below or just stop by the main page and look under the WHAT'S NEW Section, you can't miss it! This is our chance to put RSD on the map folks! Imagine seeing a movie at the theatre on RSD! Or even on HBO! Then having it get to the Medical Schools! we can advance further in one year with this than we have in the last ten!

Thanks in advance for your help. If you have any questions, drop me an email ( RSDHope@mail.org ) or drop one to Barry Adler. His email is flatwins@myacc.net

DETAILS ON RSD DOCUMENTARY NOW AVAILABLE ON-LINE
RSD Documentary! Details!
http://www.rsdhope.org/ShowPage.asp?page_id=156

When you visit this page you will also see a link to the website for the documentary and there is a 3 minute preview of the film there!



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Saturday, October 14, 2006

Pain syndrome an excruciating condition


KING5com, originally uploaded by rsdscrpsnews.

Pain syndrome an excruciating condition

02:55 PM PDT on Thursday, October 12, 2006

JEAN ENERSEN / KING 5 News


Eleven-year-old Rachel Heisler loves to watch her brother race, especially now that he has a ribbon honoring her race against pain right on his car.

"She would sit in the stands and cry it hurt so bad, but she had to go see him race," said Rachel’s mom, Marilyn.

Rachel suffers from complex regional pain syndrome or CRPS. She was diagnosed after a minor foot injury during gymnastics triggered agonizing, non-stop pain. Now, nearly any vibration at all can bring her to tears.

"The microwave beeping, the phone ringing … so everyday noise would make it worse," said Marilyn.

Dr. Robert Schwartzman, an expert in CRPS, says the chronic pain ailment can be brought on by even the slightest injury to nerves or nerve endings.

"It starts with severe pain out of proportion to what the injury is. So, you twist your ankle. Then, all of a sudden, it starts to swell more than it should," he said.

He says the pain can spread throughout the body and is virtually unbearable.

"I don't think there's any pain in medicine that's worse than this. You can't be touched," he says.

While there's no cure, Dr Schwartzman says pain medications and some treatments do show some benefits, but early diagnosis is critical.

"If it got caught early and people understood this, I think we could dramatically stop its devastation," he said.

Rachel gets a lot of support from her family. She's improving and is trying chiropractic care. She can get around without her walker now, and has big plans for the future.

"I want to go back in gymnastics, have no pain, and go back to school!" she said.

New research shows that some people may be genetically predisposed to CRPS, which would explain why some people get it while others don't.

The National Institutes of Health is funding several studies in hopes of better understanding the disease and to find a treatment.




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Sunday, October 08, 2006

Young patient's pain won't go away Minor injury sparks crippling illness

Young patient's pain won't go away Minor injury sparks crippling illness

Wednesday, October 04, 2006
BY JO COLLINS MATHIS
News Staff Reporter


The 23 stuffed animals sharing Rachel Schneemann's bed at the C.S. Mott Children's Hospital at the University of Michigan are gifts meant to cheer up the 12-year-old Pittsfield Township girl.

But the menagerie does more than that. Positioned just so, under an arm or an elbow or a knee, each plush toy helps ease the pain throughout her body that is sometimes so sharp that even a faint breeze on her skin sends her reeling.

"There's nothing harder than seeing your child in pain,'' said Rachel's father, Kirk Scheemann.

"And not being able to fix it,'' added his wife, Heather.

Rachel has a severe case of reflex sympathetic dystrophy syndrome, a malfunction of the nervous system characterized by relentless pain, tissue swelling and extreme sensitivity to touch.

There is no known prevention, cause or cure. It typically begins with a simple injury or medical procedure.

For Rachel, an eighth-grader at South Arbor Charter Academy on Carpenter Road in Ypsilanti Township, it began with a sprained ankle during a three-legged race at summer horse camp on June 28.

She went home from camp the next day. When the pain hadn't subsided in a week, her parents took her to the emergency room, where her ankle was placed in a cast.

But the swelling and pain only got worse. On July 10, her pediatrician determined she had RSD.

Rachel immediately started a treatment of pain medication and five days of physical therapy each week. She wasn't getting better, but she was functioning somewhat normally on crutches and going to school. Always very active, she could quickly make her way on crutches from one end of Briarwood Mall to the other.

But on Sept. 18, Rachel slipped on her crutches and fell down. Within 45 minutes, the pain spread through her entire body, including her face. As she screamed in agony, her parents lifted her carefully and drove her to the emergency room.

She's been at U-M ever since. For the first five days, she hurt too much to even speak, and communicated by moving her eyes. A team of professionals from several disciplines has treated her.

Heather Van Mater, pediatric rheumatology fellow at U-M Health Center, said that Rachel has been treated with a combination of several oral medications, intravenous pain medications, an anesthetic agent that proved to be helpful with the syndrome, as well as physical and occupational therapy.

With RSD, the brain has a very exaggerated response to pain, so the medication's aim is to change the threshold at which one perceives pain.

Normally when a person is injured, the brain perceives pain until the injury heals, explained Hilary Haftel, associate professor and pediatric rheumatologist at U-M Health Center.

"In this illness, the nerves gets into a loop where the perception of pain never goes away even though the injury is healed,'' she said. "It's the nerves that haven't healed.

"The hope would be that with therapy, it can be treated, and eventually her symptoms will resolve,'' said Haftel. "But since how patients respond is so variable, it's hard to predict for any particular patient. We expect it to get somewhat better. We just can't be 100 percent sure if everything's going to get completely better.''

She said children in general have a higher remission rate than adults.

One day last week, Rachel was sleeping on her back in her hospital room, her brown-rimmed glasses still on her nose, one arm resting on a teddy bear, the other hand curled inward. Blankets covered just her mid-section, and her legs dangled off the bed, her swollen ankles and feet just inches from the ground.

Her left foot hasn't touched the ground, or a sock, in three months.

When she woke up later, Rachel responded to questions in a soft voice.

Asked what makes her feel best these days, she responded: "Visitors.''

Earlier, she had told her parents that when she gets home from the hospital, she wants to begin collecting backpacks to take to children still at Mott.

What will they contain?

"A stuffed animal,'' she said. "A Wendy's gift certificate so their parents can go get 'em something (at the Wendy's in the hospital). And postcards.''

She wants the postcards sent to patients' friends as a reminder to come visit soon - and to bring a stuffed animal.

Is there ever a time she's not in pain?

"No,'' she said. "It's very painful. It's all kinds of pain mixed together.''

She's often cold, but can't stand the covers on her body. She's supposed to have her feet up, but that hurts. If no one touches her, the pain is bearable. But if someone so much as brushes by her, the air movement can make her cry out.

"I read that if you poured kerosene in your veins and lit a match, that's what it's like,'' said Heather Scheemann. "Basically you have to watch your child being tortured, while she's screaming, 'Help me! Help me!' It's absolutely horrendous. And the doctors are saying, 'We're not sure what to do anymore.'''

One day, Rachel can be comfortable, as long as no one touches her. The next day, she can be writhing in pain.

"It's hard to hold onto hope in situations like this,'' said Rachel's mother. "We're looking for a miracle.''

Rachel's parents stay with her around the clock, with one or the other taking short breaks to check on their other two children. Kirk Schneemann is the pastor of Frontline Church in Ann Arbor, and Heather Schneemann is the drama teacher at South Arbor Charter Academy.

The couple say school and church communities have come through for them in a big way, helping with their other children, daughter, Kailey, 14; and son, Trevor, who turned 10 on Monday.

The family has Blue Cross insurance and hopes the coverage is thorough.

Rachel is being evaluated for several procedures and may qualify for U-M's pain clinic. The Schneemanns hope Rachel will be admitted to the Cleveland Clinic's Pain Clinic, which offers a treatment for RSD not available here.

"It's been an emotional roller coaster for Rachel and her parents,'' said Van Mater, "but also for nurses and doctors because we obviously go into medicine to try to help people get better. So it's very frustrating for us.''

Haftel said it was fortunate that Rachel's pediatrician made an early diagnosis so she could begin therapy early on. Some patients go years without a diagnosis, including those who never return to full function and some who can't get people to believe them.

As she spends another day in a hospital bed, Rachel has plenty of time to choose just the right names for the stuffed animals a constant stream of visitors supplies.

Some are named after her favorite nurses. But a yellow duck was named to reflect her mood at the moment. It's called I Want To Go Home, which is not to be confused with the white fluffy dog she received later. That one's name? I REALLY Want To Go Home.

Jo Mathis can be reached at jmathis@annarbornews.com or 734-994-6849.




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Teen RSD patient educates others

Teen RSD patient educates others

Treatments at Cleveland Clinic have put disease in remission
Wednesday, October 04, 2006
BY JO COLLINS MATHIS
News Staff Reporter


Life is so good right now for 15-year-old Jordan Keen that she's going to throw a party Saturday night to celebrate. On tap for the evening's entertainment? The burning of the crutches she no longer needs.

Jordan, of Dexter, was 12 when she twisted her knee while skiing in January 2004. Because the pain never stopped after the accident, her parents took her to one specialist after another, including a surgeon at a children's hospital in Orlando, Fla.

They all said the same thing: There was nothing wrong with her leg. It must be in her mind

Even some of the kids at Dexter's Mill Creek school were convinced she was faking it and would purposely bump into her crutches to prove it.

"That would send me through the roof!'' said Jordan, now a 10th-grader at Dexter High School. "On a scale of 10, the pain was an 8 or 9.''

"When are you getting rid of your crutches?'' the kids would ask.

Her answer was always the same: "ASAP.''

Her parents, Sue and Doug Keen, believed in their daughter, an athletic over-achiever who would never want to be on crutches or in a wheelchair if not for the intense pain she felt whenever she put weight on her knee.

So they kept searching for an answer.

"Nobody said anything about RSD,'' said Doug Keen, a pilot with Spirit Airlines. "And we went everywhere.''

Finally, about a year after her injury, a retired physician who worked once a week in the orthopedics department at St. Joseph Mercy Hospital suggested that it could be reflex sympathetic dystrophy syndrome, a nervous system malfunction that causes relentless pain, tissue swelling and extreme sensitivity to touch.

While researching RSD on the Internet, the family learned about the Cleveland Clinic Pain Clinic, which now refers to RSD as complex regional pain syndrome, or CRPS, according to its Web site.

It took months to be admitted to the Cleveland Clinic, but Jordan finally got in nine months ago and was there for six weeks. She underwent physical and drug therapy and psychological counseling to help her deal with the pain. For some patients, that's enough. But what made the difference for Jordan was a spinal stimulator, which sent electrical signals to her spinal column. Those signals blocked the pain signals Jordan's system was receiving.

Jordan is in total remission now, but she has to be careful. To prevent another injury that could lead to a flare-up of RSD, she doesn't run. She wanted to try out for the basketball team but realized she should stick to helping manage the team.

An active member of the YMCA in Ann Arbor, she enjoys swimming, riding her bike and playing percussion in the Dexter High School marching band.

"I feel amazing,'' she said Monday night during a phone conversation on the way home from band practice. "I'm pain-free, going to school like a normal kid.''

Doctors in Cleveland told her she probably had RSD when she was as young as 3. That's when she sprained an ankle and was in so much pain that she resorted to crawling on the ground for several months.

Jordan is so grateful to be pain-free again that she's telling everyone who'll listen about RSD in hopes that others won't have to suffer through what she did for so many painful months.

She's created a PowerPoint slide presentation about RSD, which she's already shown to one physician.

"The doctors were telling me I was psycho, and I knew I wasn't psycho,'' she said. "I want to teach all doctors that if there's nothing wrong with you orthopedically, it doesn't mean you're fine. There could be the hidden things, like RSD. I want to help educate everybody about it.''

Jordan learned about Rachel Schneemann, a 12-year-old Pittsfield Township resident with a severe case of RSD, when a friend of the Keen family happened to talk to Rachel's mother while they were each buying coffee at the hospital.

"I loved meeting Rachel,'' Jordan said. "It was so amazing because when I was where she is, I wanted to have someone who knew what was going on. I wanted to hug her and tell her it was going to be OK.''

Jordan did get to tell Rachel it will be OK. But she, more than anyone, knew this: The hug will have to wait.

Jo Mathis can be reached at jmathis@annarbornews.com or 734-994-6849.




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The cost of living with pain

The cost of living with pain
Thursday, October 05, 2006 10:22:01 PM

The cost of living with pain


“My entire leg is on fire, it’s an inferno,” she said.

A task as simple as putting on a pair of socks or a dress can become a nightmare for her. The sheets on her bed had to be changed to something softer. Her husband and three children have adjusted to it, but life is still a struggle.
White suffers from a misunderstood and little known condition called Complex Regional Pain (or CRP). According to the American Academy of Family Physicians, “no single drug or combination of drugs gives long-lasting relief to patients with this problem.” It can occur after surgery, a heart attack, a stroke or other medical problems.

The day after an operation on Feb. 27, 2004, she felt something was wrong with her foot. After several visits to the doctor, she was finally diagnosed with CRP, on December of 2004.

“I have to just pray that it goes away,” she said of the pain.

“My swelling is still in my foot, it’s still in my leg. I’m not diabetic, but I have to wear diabetic socks. I went from a 11M shoe to a 13 doublewide shoe for the right foot alone.”

When she discovered that the condition affects children, she decided enough was enough. White has had several resolutions passed in her honor (#147 and #50 respectively), as she emerges as an activist and educator against the condition.

“I became angrier after I found out it affects children,” she said. “For them to have this awful disease at such an early age…it angered me because medical science can put a man on the moon, and a machine on Mars, but we have no cure for CRP.”

She also received a resolution from the Detroit City Council earlier this year. But she still has to suffer through the pain, supporting herself with a cane or by using a scooter. Physical therapy makes the pain worse.

“Right now the disease is eating the muscle in my leg,” she said. “Jesus Christ is my inspiration. He says He’s not going to put more on me than I can bear, and I believe that. I do use vitamins and some herbs. I’ve been researching Egyptian medicine. I use Dead Sea salt in my bath water. My pain level on a daily basis is 7 from a medical perspective. If you look at it from my perspective, it’s totally off the chart. I told Dr. Scott I was going to get a bill from the state.”

Dr. Tara Long-Scott, her podiatrist, has seen quite a change come over White, and was at first skeptical because no one had really taken up the mantle for CRP.

“That’s the thing about Mrs. White, when she said she was going to do it (get resolutions passed) – she did,” said Long-Scott. “She is trying to increase awareness in the general public and the medical (field); she’s also pushing for more research. Doctors know about it (but) because it’s so misunderstood, it’s so important that there’s more awareness.
It happens more commonly in women than men, but it can occur at any time.”

White has started her own support group at People’s Community Church, which meets every last Friday of each month. The purpose of the group is to educate and promote awareness to support other RSD sufferers, their families and givers, or people who are just interested.

“Don’t ever give up,” she said, offering advice to others who are suffering from the condition. “I keep saying I have 68 more years before I stop walking on my own power, which equals 120 years, that’s the type of fight that I’m putting forth and that I won’t quit. I’m not going to just sit down or lay down.”

For more information on Complex Regional Pain, or to join the support group, call (313) 871-4676. The meetings are held at People’s Community Church, 8601 Woodward.




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Thursday, October 05, 2006

Battling the pain


Inside_Bay_Area_com, originally uploaded by rsdscrpsnews.

Battling the pain

Recovery from painful RSD has has Dublin girl and her family doing backflips

By Barry Caine, STAFF WRITER


CARLI CAUCHI
is one of the lucky ones. Less than a year ago she couldn't walk. The pain in one foot was excruciating.

The slightest touch "felt like acid" and she had to sleep with her leg up in the air.

"I was very, very, very cranky," Carli says. "It hurt really bad. It was always throbbing."

Now the sprightly 12-year-old is almost all smiles. She's back competing in gymnastics and roller-skating with friends.

"We're just so fortunate," her father, Jerry, says.

Carli has RSD, Reflex Sympathetic Dystrophy. It's a debilitating nerve-related syndrome, not a disease. The pain is constant. It does not go away. If not diagnosed and treated early, ideally within three to 11 months, RSD usually worsens. There is no cure.

And it can spread.

After Carli's foot began to heal, the pain moved to her right hand. A student at Wells Middle School in Dublin, she remembers the moment the misery began.

It was a Sunday in mid-January. She and her mother Bobbi were lying on their living room floor watching "Extreme Home Makeover."

"All of a sudden I started to cry," Carli says. "My mom thought it was because of the show, but it was because of my foot."

Carli's doctor recognized the problem immediately, not an easy thing since symptoms vary and RSD remains a stranger to many medical professionals.

The diagnosis started a surreal odyssey that took the Cauchis through 17 other doctors and specialists in 21 days. Not all of the specialists were special.

"They said, 'It's all in your head,'" Carli recalls. "There's no way you can have RSD. ... I felt sad because no one was believing me."

The syndrome strikes more women than men. Although all ages are susceptible, most cases happen with people between the ages of 20-50.

One neurologist estimates the number of Americans suffering from RSD at several hundred-thousand.

"You have to listen to your kids when they tell you they're sick," Jerry says.

He's been told that RSD is expected to strike one out of every 160 children because so many parents are involving them in competitive sports at an early age.

The syndrome can start from a fall, bump, sprain, twisted ankle, minor surgery, or something as mundane as a dog pulling on its leash.

When a bone scan confirmed Carli's RSD, doctors put her on medication. She had 12 surgeries (to insert small devices under the skin to block sympathetic nerves). One temporarily left her numb from the waist down. In all, the Cauchis spent time at five hospitals.

"The first day, you believe you're going to get it fixed," Jerry says. "The second or third day you have to adjust your schedule.

"A numbness comes over. 'This is my life, all there is.' You're going through the motions at work. It's always in your mind."

Jerry ran the family business, Cauchi Photography in Dublin, while Bobbi took time off.

"My job is Carli," she says.

At the hospitals, one or the other was always with her.

Jerry kept friends up to date with his blog, cauchi.com/carlisblog.

As Carli might say, the family got "very, very, very" lucky at Lucille Packard Children's Hospital in Stanford, the fourth facility they visited. By then the RSD had spread to Carli's hand — after her ring finger popped as she reached for a laptop.

"Again they're thinking I'm bogus," Carli says about the emergency-room experience. "They said, 'You're overreacting. It's not possible for RSD to manifest so quickly.'"

Her father says, "You have to make an awful lot of noise to get people's attention and you have to be constant and militant about it. Parents as advocates for their children cannot be overstated."

A savvy Stanford doctor put the Cauchis in touch with a highly touted program at Children's Hospital in Seattle. The selective facility takes two children at a time for a two-to-four week period.

Before sessions started, the Cauchis weaned Carli off all drugs except for one painkiller. At the hospital, they put her on an anti-depressant. And they worked her hard. The regimen included bike, treadmill, swimming, yoga, crab-walking and basketball. Bobbi describes the scene as "extensive physical therapy, a boot camp mentality.

"You walk in in the morning, get a schedule for the day. You're allowed to meet (your child) for lunch but you're never allowed to see anything."

Carli began to feel better after two weeks.

Seven months and $550,000 in medical bills after the RSD's onset — the insurance company covered the bulk but claims still come in — the Cauchis are cautiously optimistic.

"They told me if we can keep it away for six months after the program, 96 percent of the time it won't come back," Bobbi says. The six months is up in early February.

Carli still feels some pain. On a 1-to-10 scale, 10 being untenable, it's usually a 1 — but it can jump to a 5. When her foot hurts, she often climbs back on the exercise bike and works out until the pain's negligible.

Another change: When someone wants to shake hands, she offers her left. It's her dad's idea. Some people squeeze hard out of habit. Carli appreciates the tip. In fact, she appreciates just about everything these days.

"I'm lucky, first because not a lot of kids get to go to Washington," she says after running downstairs with a backpack containing her schoolwork. "I'm lucky to have friends and parents like I have.

"Third, everyone was really nice to me most of the time. And I'll probably not have this anymore, unlike most people."

For information on RSD, visit the National Institute of Health Web site at http://health.nih.gov/topics.asp/R and click on reflex synthetic dystrophy.

E-mail Barry Caine at bcaine@angnewspapers.com, call (925) 416-4806 or write c/o 4770 Willow Road, Pleasanton, CA 94588.




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It's Not In Your Head. Pain Syndrome Is Real


KOLD_News_13, originally uploaded by rsdscrpsnews.

It's Not In Your Head. Pain Syndrome Is Real
Oct 3, 2006 12:39 PM
From the KOLD News 13 Newsroom


(Video of this story available on the KOLD website, click here)



Imagine doing something as innocent as stubbing your toe or twisting your ankle, and developing an unbearably painful and chronic condition.

It's Complex Regional Pain Sydrome, or CRPS, and it's happening to as many as a million or more Americans, even children.

The experts say many doctors, but not all, are baffled.

Eleven-year-old Rachel Heisler loves to watch her brother race, especially now that he has a ribbon on his car honoring her race against pain.

Rachel's mother Marilyn Heisler says, "She would sit in the stands and cry it hurt so bad, but she had to go see him race."

Rachel has CRPS.

She was diagnosed after a minor foot injury during gymnastics triggered agonizing, non-stop pain.

Now, nearly any vibration at all can bring her to tears.

Her mother says, "The microwave beeping, the phone ringing. So everyday noise would make it worse. "

Dr. Robert Schwartzman is an expert in CRPS. He says it's a chronic pain ailment brought on by even the slightest injury to nerves or nerve endings.

Dr. Schwartzman, says, "It starts with severe pain out of proportion to what the injury is. So, you twist your ankle. Then, all of a sudden, it starts to swell more than it should."

He says the pain can spread throughout the body and is virtually unbearable.

He adds, "I don't think there's any pain in medicine that's worse than this. You can't be touched."

For years, people were told it's "all in your head," but Dr. Schwartzman says new research proves CRPS is real.

He says, "100 percent. There's no question about this anymore. Zero."

While there's no cure, Dr Schwartzman says pain medications and some treatments do show some benefits, but early diagnosis is critical.

He says, "If it got caught early and people understood this, I think we could dramatically stop its devastation."

It's devastation Vance Hudson knows all too well. It took doctors years to diagnose him.

He says the pain has taken over his life. "I'm no longer employed. I spent a year without any income at all. It impacts relationships. I'm just not the same person I was."

Hudson and many patients find relief in support groups like the one run by Keith Orsini.

It's called American RSDHope. Orsini says CRPS can leave you feeling depressed and alone.

Orsini says, "That sensitivity to touch sometimes means you can't be hugged by your children. The slightest kiss from your husband, kiss from your girlfriend can cause extreme pain."

Rachel gets a lot of support from her family. She's improving and is trying chiropractic care.

She can get around without her walker now, and has big plans for the future.

Rachel says, "I want to go back in gymnastics, have no pain, and go back to school!"

New research shows that some people may be genetically predisposed to CRPS, which would explain why some people get it while others don't.

The information also may help doctors diagnose CRPS patients sooner.

The National Institutes of Health is funding several studies in hopes of better understanding the disease and developing treatments.

CRPS was formerly known as Reflex Sympathetic Dystrophy, or RSD, so you may often see the term RSD used in reference for the syndrome as well.




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