700 Club Baffles Scientific Research with a Miracle of one ALS Patient

2004 Flint Journal

GENESEE TOWNSHIP

THE FLINT JOURNAL FIRST EDITION

Saturday, March 27, 2004

By Helen S. Bas

700 Club, Amazing Story by Peter Bustetter and Lisa Ryan

Power Of Positive Thinking And Prayer Helps Woman With ALS

When Wendy Moore thinks about the past three years, she remembers pain, fear and the specter of dying young.

Today, the 30-year-old working mother of two young boys is grateful, happy and certain that prayer and positive thinking spared her from a deadly disease that medical science can't yet stave off.

In 1998, Moore and her husband, Steve, had just had their first child, Jacob. Moore was working at the Genesee County 911 Communications Center and was a paramedic. She began to notice weakness in her legs. Soon she experienced difficulty lifting patients, climbing stairs and getting up from the floor.

More than a year of testing revealed nothing specific, and Moore had just given birth to Zachary when her doctors sent her to the University of Michigan Medical Center in Ann Arbor. There, after several visits to specialists and numerous medical tests, Moore was told she had Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease.

Moore was told there is no cure or treatment, and that her life expectancy was two to five years. The young mother and her family were devastated. Moore's mother, Jan Charchan of Genesee Township, was stunned.

"We ached with pain for the burden she had to carry," she said. "Our despair was unbelievable."

Moore hardly could believe the diagnosis. "I literally could not function," she said. "I cried day and night."

Moore's father, Dave Charchan, said the diagnosis was so horrific that the family couldn't believe it.

After the initial shock, Moore had to decide how to handle the news. She was told she could apply for disability benefits, and went through the application process. Ultimately, she rejected the idea of disability and decided she was going to use the power of prayer to beat the disease.

Moore's family always had been spiritual and believed in prayer and positive thinking. They asked their church members to pray for Moore and began praying together every day.

"We had faith and believed that God would take care of this," Moore said. "we do know there are miracles and so believed there was hope for me."

Still, she didn't abandon traditional medical treatment or the advice of her doctors. She tried an ALS drug, but stopped it because of severe side effects and because it didn't appear to be helping. She took vitamins and some supplements, too.

She continued regular visits to her doctors at U-M and continued to work full time. The family continued praying. Moore didn't let her disease stop her from enjoying life, although she was scared to death before each medical visit.

Soon, the news from the doctors began to be less bad, then downright good.

"At first, they would tell me there was no change, which was good by itself," Moore said. "Then they said I was doing so well I could come back in six months instead of three."

After a time, Moore's faith was growing and she wasn't falling as much, but she still thought about her disease every day. She was doing so well that the time between medical appointments increased. In August 2003, she was told to come back in a year. Then, in September, she received a call from her doctor.

"They asked if I would have a repeat EMG (nerve conduction test)," she said. "I did, and they said there was no evidence of ongoing nerve death."

What this meant, Moore said, was that she did not, at that time, have ALS.

"When they told me that, I just lost it," she said. "I couldn't believe it. I cried for 10 minutes, then called in my family."

While the doctors have no explanation for Moore's change in diagnosis, many, like Moore and her family, believe that prayer and positive thinking can affect health. Judie Book, a registered nurse at Community Home Health and Hospice in Flint Township, believes that prayer and positive thinking can have an affect on the course of disease.

"I was diagnosed with Multiple Sclerosis more than 10 years ago," Book said. "Along with the medical treatments, I went to healing masses and prayed. Studies have shown that prayer helps, even when the person doesn't know people have been praying for him.

"I can't discount a miraculous experience. Our bodies have to be in balance, and spirituality gives balance. I don't advise stopping medical treatment; it takes a balance of it all."

Moore said her faith has grown as a result of her medical situation. The family continues to pray together every day; if they're separated, they do it by phone. She thinks her disease was a stumbling block that she was able overcome.

"Life is awesome. Because I kept working and taking care of my boys I feel I didn't miss a beat," Moore said. "I still have a little muscle weakness, but it's not bad and even if it doesn't ever get any better, it's just fine.

"I think it's mind over matter. I've always asked God to give me strength, and mental attitude is a big thing. We believe in the power of prayer. Before, I had a death sentence, and there's no other explanation for what happened. I have my life back."

It Has Been An Interesting Week...

...and it's only Thursday morning.

Monday: The ALS Hatfields vs. The ALS McCoys

A few patients with ALS are trying some experimental treatments at an academic medical center in Mexico. The internet is quite the enabler for them to share their experiences. There are those who believe with every remaining neuron that this is going to be a big breakthrough. There are others who believe with every remaining neuron that this is going to be a painful and expensive dud.

The Hatfields and the McCoys stayed on their own message boards and spoke their minds... then on Monday, the great crossover occurred and the rhetoric heated up.

I offer this perspective from one who has been paying attention to ALS for many years. In the 1990s we had a wonderful resource -- Bob Broedel's ALS Digest. Using the listserv technology of the time, it delivered (to our dial-up email boxes) daily batches of questions and answers and observations and comments from people worldwide. Google may help you find some of the old digests that people have archived. There were people going to Kiev for treatments and there were people who thought they had discovered the cause of their ALS and there were people who always brought up frustrating comments about needing to be scientifically rigorous and statistically significant. The online media have changed in 2009, but not much has changed in the message. People who are dying from a mystery disease don't have time to sit back and wait and die. Other people add huge doses of scientific scepticism. With "normal" diseases it's a healthy point-counterpoint. With ALS it becomes a complicated fight for survival. The online tools and mores of 2009 make the conversation difficult to watch. Some of us even have questions that we would like to ask about the science and the protocols but hesitate to do so simply because there are such unpleasant lines in the sand.

Tuesday: What's "New?"

http://www.neurology.org/cgi/reprint/73/15/1218

All of the major ALS organizations touted that new patient care guidelines were to be presented by the American Academy of Neurology. When I read them, I wondered what was new. The practices were what we did in 1996 when Mom was diagnosed.

The not-much-new guidelines are revealing. Today we're not doing much differently from what Lou and Eleanor Gehrig did... except the wheelchairs are a lot nicer today. The need for these published guidelines also tells us something about the understanding and awareness of ALS in the general neurology and medical communities. If this document is a valuable new resource for physicians, then we have a lot of healthcare professionals who have not been very aware of ALS.

Wednesday: Easy For You To Say

On Wednesday the article "Fight Smart, Not Just Hard -- How I'd Battle ALS If It Happened To Me," by Richard S. Bedlack, M.D., Director of the Duke University ALS Clinic, was published in Neurology Now, a publication of the American Academy of Neurology.

Unfortunately the article (which was full of helpful suggestions) could have used a better title and premise.

We who don't have ALS can empathize and suggest, but we'll never know what it's really like to be slapped with that diagnosis and its complicated aftermath.

Sometimes it's hard to fight smart when it's not a fair fight... and the ground rules vary greatly depending one's situation in life.

So we still have three days in this week. I hope that it gets better for those dealing with ALS. If there is one thing that I am remembering this week it is that there are no right answers with a disease that is so wrong.

Walking the Holy Land - for those who can't

The day we got the message that my mother, Lee, suffered from Lou Gehrig's Disease (ALS), we knew that from that moment on we were facing a painful and despairing death: Her neurological disorder stole her ability to hug, to speak, to eat, to walk, to move her limbs and even to breathe. With gigantic effort she murmured to us "I love you."But we couldn't help her.

My mother, Lee Rabinowitz, died of Lou Gehrig's (ALS) in the summer of 2008.
In her memory , my wife Tzippi, my son Ezra and I, will start backpacking the entire Israel Trail from north to south, some 1,000 winding kilometers (625 miles). Our goal is to raise both ALS awareness and funds for ALS research in Israel. This is the best way we know to express thanks for our miraculous ability to walk.
We will be very encouraged in our journey if you join us: You can do that by viewing, in this website, our blogs, photos and video clips of Biblical sites as we progress.
And equally important, you can join our effort by "sponsoring" one or more kilometers, at $36/km, so that ALS research can advance as we advance. We deeply appreciate your participation in this effort.
Together we can do it. Let's walk the land for those who can't. Can I count on your support?

Many Thanks and Blessings, Allan Rabinowitz

At The Risk Of Being Maudlin, This Is The Reality Of ALS...

We are grateful for the information posted today regarding the late 2010 launch of the national ALS Registry.

http://tinyurl.com/ya5pofw

Patients have been encouraged to leave their email addresses so that they can be notified when they can enroll in the registry.

How many of them will be here in 14 months to receive the email?

Do We Sense A Crescendo To Veterans' Day Building?

http://als-advocacy.blogspot.com/2009/10/action-item-from-alsa.html

Is there a well orchestrated media campaign for Veterans' Day building?

It could give millions of ordinary citizens a reason to be outraged about ALS.

Treatment: "Everything Will Be Okay" Feature length documentary: 75 minutes

If you were given 2-5 years to live, what would you do?
My name is Patrick. Sometime during the fall of 2004, I noticed an involuntary shaking in my legs. For a long time the exact cause eluded definition.

On May 24th, 2005, however, I was officially diagnosed with Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig's disease), a terminal disease that results in the progressive degeneration of the nerves and muscles responsible for voluntary movement. It is a fatal and incurable disease. I was 30 years old.
As evidenced by the film segments on this website I have chosen to do something with my illness. Over the course of 2006 and 2007 I will document my journey with ALS on 35mm motion picture film. This challenge has given me a focal point to channel my energies, and will hopefully inspire others to keep moving through their own adversities. At this point in my life my intention is to be at peace with myself, and to pursue my life's work of making a feature film about something which reaches for the truth. All of my adult life, I have been making films - films about unconventional characters, stories about vulnerable souls. Now, in the last years of my life, the film I am making, the character I tried so hard to write all these years, the story which eluded me on paper, is unfolding across my body, inside my nervous system, and in front of my eyes. I have become the character in the film which I have been striving to bring to the screen all these years.

Please help me complete my life's work by donating to the completion of my film. Your contribution will make a difference in the way our government and our world sees this ugly, spirit punishing, insidious illness. By bringing attention to this fatal diagnosis, victims, their families, and their communities will benefit from a shift towards better resources, more accurate healthcare policies, and improved treatment options. By donating now, you will be a founding member and key part of a landmark motion picture about the impact of ALS - what it means to be alive, what it means to die, and what is important in life.

Patrick O'Brien AKA Trans-Fatty Notorious P.O.B. (B.I.G.) check-it, bang-it.

cure ALS from Patrick O'Brien on Vimeo.

Dear ALS Organizations, Perhaps It's Time For Some New Individual Performance Expectations

This problem first struck me when I checked into a hotel two days into a large ALS conference. After I told the desk clerk that I was with the ALS group and he found my reservation, I asked him if he knew what ALS is. I expected him to come back with, "Lou Gehrig's Disease. They even gave me this nice wristband." He said he didn't know. Two days of working with people who professionally represent the ALS cause and nobody thought to fill the desk clerk in. It could have been the American Llama Society for all he was told. The meeting planners and the individual attendees did not spread the word about ALS.

It's simple. "I'm with the ALS group... Do you know what ALS is?... It's Lou Gehrig's Disease... still don't know the cause... still no cure... still terminal." That's all there is to it.

Yesterday I helped at an ALS walk. The young attendant in the parking garage didn't know what ALS is. The concessionaire on the park grounds didn't know what ALS is. The fellow guarding the adjacent event didn't know what ALS is. Two couples walking through the park didn't know what ALS is. They do now. It's simple.

You can be sure that anybody who works for a business whose name is not quickly identified with its product has a hook to make sure that hotel staffs and catering personnel and car park attendants and security guards know what that product is.

It should be the personal responsibility of everyone engaged in the fight against ALS (especially those who are being paid to do so) to spread the word. Never just say, "ALS." Always say, "ALS... do you know what that is?"

Perhaps on annual performance appraisals there should be an evaluation of some simple things like personal effectiveness at spreading the word.

Nothing Is Easy With ALS

Please watch this video news report:

http://www.krem.com/video/localnews-index.html?nvid=399226&shu=1

The short news segment contains an education on ALS that everybody should be required to watch.

• The patient is a sharp cookie isn't she? Her body is failing, but her words are enlightening, intelligent, and reasonable.
• Time is a problem, isn't it? People with ALS deal with a ticking clock. They're told not to put things off, yet the world around them throws up obstacles that are taller and wider to someone dealing with ALS.
• Loved ones try to help, don't they? How wonderful that a family would send a patient and her husband on a trip that would give them a break.
• Most people don't understand, do they? What airline or insurance company would dismiss the problem of a person with ALS if they really understood the nature of what ALS is.

An investigative reporter in Seattle now understands ALS and has informed a few more people. Please pass this story along to people who don't understand ALS. Perhaps they may be in a position someday to be part of the solution rather than part of the obstacle course.

Perhaps we have all failed to get the word out about ALS effectively.

Society, if you can't cure it, then help them deal with it.

Don't Read This!

A software engineer once explained to me that the odds of getting a person to read a helpful file's contents would be much greater if they called it "dontreadme" rather than "readme." Here's hoping that theory on the attractiveness of verboten material holds with this posting.

There is a widow/widower benefit which all of those lost to ALS who served at any time in the U.S. military earned. Time is of the essence to get claims in for those who died in the past. This is the benefit that Dear Abby and Fred Campbell introduced to so many.

I'm not sure why our ALS organizations have not been more public and aggressive in passing this information along to those who may have lost loved ones many years ago.

Dear Abby...

http://als-advocacy.blogspot.com/2009/07/dear-abby-readers-learned-about-als-in.html

Item from a PVA chapter with details and the importance of September 23...

http://als-advocacy.blogspot.com/2009/09/pssst-why-is-this-als-tidbit-such-well.html

Please help spread the word to those who may have spent the last five or ten or twenty years trying to forget the vicious Lou Gehrig's Disease that stole a spouse. They may well be entitled to some help.

One Can Stem Cells Please

A visit with Freddie at Methodist, 03/22/09. Freddie was a world class musician, who had just signed with SONY, when he became ill with ALS - Lou Gehrig's Disease. He was my best friend in the world. He passed away on 04/02/09. RIP Freddie. I love you, man.


A Can of Stem Cells

Wheelchairs Not Allowed

Benevolence Gone

At a town hall meeting in Red Bank, NJ, rowdy audience members reached a new low: When a woman in a wheelchair with "two incurable auto-immune diseases" dared to ask a question, the crowd promptly shouted her down.

No Harm, No Foul?

Medical errors are a hot topic in the media and in the healthcare reform discussions. According to the Wall Street Journal (August 25), up to 98,000 deaths each year are thought to be attributable to medical errors. There is additional expensive waste in our healthcare delivery whenever an avoidable infection is acquired or a test is administered incorrectly.




While people are discussing the topic of medical errors, here is a big question to add to the conversation. If a physician mistakes ALS for something else, is that reported as a medical error, or is it dismissed as "no harm, no foul" since there is no cure or effective treatment for ALS anyway?