Wednesday, October 28, 2009

Remember The Song "My Dog's Bigger Than Your Dog" from the old Kenl-Ration ads?

You may want to hum that as you read on.

Here's another trip down memory lane. Remember the world before federal legislation required lenders and banks to provide APR and APY information in ads? Before the APR requirement, you could see an ad for loans at 2% with an obscure reference in the fine print that it was a monthly rate. No reference to the outrageous 24% APR was made. Another ad might tell you that your savings could yield 10%. Again, there may have been a reference that the 10% might be achieved at the end of a 10 year period. Who would have realized that the APY was only 1%. It was misleading for consumers who weren't watching the fine print and it made it very difficult to compare different financial institutions' products. Perhaps that was the idea.

The requirement for APR and APY specifications in advertising has given the consumer a much clearer picture of rates and lets consumers compare products much more easily.

A few years ago one ALS not-for-profit ran a compelling promotion on how many millions of dollars it had raised for research in a three-year period. We now find another organization touting its spending on research over the last ten years.

Certainly these numbers are motivators for those looking for a substantial destination for their donations, but it makes it next to impossible for us to get a clear picture of exactly what is really being spent on ALS research annually.

Here is my plea for all ALS organizations funding research:

Please tell us how many dollars you invested directly in ALS research in the last calendar year. In addition, please tell us how many of those dollars came from other ALS 501(c)3 organizations so that we don't double-count any dollar.

With those simple, clear, numbers we can understand how much is really being spent on ALS research annually.

The salesmanship of the cumulative numbers is making a very foggy picture of what is really happening. The disease is underfunded. An organization's use of cumulative numbers to appear to be bigger than other organizations does not help people understand how underfunded the effort is. Please put apples and apples on the table and let them be understood.

Friday, October 23, 2009

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

2004 Flint Journal
Saturday, March 27, 2004
By Helen S. Bas

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."

Thursday, October 15, 2009

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?"
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.

Saturday, October 10, 2009

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

Thursday, October 8, 2009

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.

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?

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.