Monday, December 28, 2009


by Tony Judt

I suffer from a motor neuron disorder, in my case a variant of amyotrophic lateral sclerosis (ALS): Lou Gehrig's disease. Motor neuron disorders are far from rare: Parkinson's disease, multiple sclerosis, and a variety of lesser diseases all come under that heading. What is distinctive about ALS—the least common of this family of neuro-muscular illnesses—is firstly that there is no loss of sensation (a mixed blessing) and secondly that there is no pain. In contrast to almost every other serious or deadly disease, one is thus left free to contemplate at leisure and in minimal discomfort the catastrophic progress of one's own deterioration.

In effect, ALS constitutes progressive imprisonment without parole. First you lose the use of a digit or two; then a limb; then and almost inevitably, all four. The muscles of the torso decline into near torpor, a practical problem from the digestive point of view but also life-threatening, in that breathing becomes at first difficult and eventually impossible without external assistance in the form of a tube-and-pump apparatus. In the more extreme variants of the disease, associated with dysfunction of the upper motor neurons (the rest of the body is driven by the so-called lower motor neurons), swallowing, speaking, and even controlling the jaw and head become impossible. I do not (yet) suffer from this aspect of the disease, or else I could not dictate this text.

By my present stage of decline, I am thus effectively quadriplegic. With extraordinary effort I can move my right hand a little and can adduct my left arm some six inches across my chest. My legs, although they will lock when upright long enough to allow a nurse to transfer me from one chair to another, cannot bear my weight and only one of them has any autonomous movement left in it. Thus when legs or arms are set in a given position, there they remain until someone moves them for me. The same is true of my torso, with the result that backache from inertia and pressure is a chronic irritation. Having no use of my arms, I cannot scratch an itch, adjust my spectacles, remove food particles from my teeth, or anything else that—as a moment's reflection will confirm—we all do dozens of times a day. To say the least, I am utterly and completely dependent upon the kindness of strangers (and anyone else).

During the day I can at least request a scratch, an adjustment, a drink, or simply a gratuitous re-placement of my limbs—since enforced stillness for hours on end is not only physically uncomfortable but psychologically close to intolerable. It is not as though you lose the desire to stretch, to bend, to stand or lie or run or even exercise. But when the urge comes over you there is nothing—nothing—that you can do except seek some tiny substitute or else find a way to suppress the thought and the accompanying muscle memory.

But then comes the night. I leave bedtime until the last possible moment compatible with my nurse's need for sleep. Once I have been "prepared" for bed I am rolled into the bedroom in the wheelchair where I have spent the past eighteen hours. With some difficulty (despite my reduced height, mass, and bulk I am still a substantial dead weight for even a strong man to shift) I am maneuvered onto my cot. I am sat upright at an angle of some 110° and wedged into place with folded towels and pillows, my left leg in particular turned out ballet-like to compensate for its propensity to collapse inward. This process requires considerable concentration. If I allow a stray limb to be mis-placed, or fail to insist on having my midriff carefully aligned with legs and head, I shall suffer the agonies of the damned later in the night.

I am then covered, my hands placed outside the blanket to afford me the illusion of mobility but wrapped nonetheless since—like the rest of me—they now suffer from a permanent sensation of cold. I am offered a final scratch on any of a dozen itchy spots from hairline to toe; the Bi-Pap breathing device in my nose is adjusted to a necessarily uncomfortable level of tightness to ensure that it does not slip in the night; my glasses are removed...and there I lie: trussed, myopic, and motionless like a modern-day mummy, alone in my corporeal prison, accompanied for the rest of the night only by my thoughts.

Of course, I do have access to help if I need it. Since I can't move a muscle, save only my neck and head, my communication device is a baby's intercom at my bedside, left permanently on so that a mere call from me will bring assistance. In the early stages of my disease the temptation to call out for help was almost irresistible: every muscle felt in need of movement, every inch of skin itched, my bladder found mysterious ways to refill itself in the night and thus require relief, and in general I felt a desperate need for the reassurance of light, company, and the simple comforts of human intercourse. By now, however, I have learned to forgo this most nights, finding solace and recourse in my own thoughts.

The latter, though I say it myself, is no small undertaking. Ask yourself how often you move in the night. I don't mean change location altogether (e.g., to go to the bathroom, though that too): merely how often you shift a hand, a foot; how frequently you scratch assorted body parts before dropping off; how unselfconsciously you alter position very slightly to find the most comfortable one. Imagine for a moment that you had been obliged instead to lie absolutely motionless on your back—by no means the best sleeping position, but the only one I can tolerate—for seven unbroken hours and constrained to come up with ways to render this Calvary tolerable not just for one night but for the rest of your life.

My solution has been to scroll through my life, my thoughts, my fantasies, my memories, mis-memories, and the like until I have chanced upon events, people, or narratives that I can employ to divert my mind from the body in which it is encased. These mental exercises have to be interesting enough to hold my attention and see me through an intolerable itch in my inner ear or lower back; but they also have to be boring and predictable enough to serve as a reliable prelude and encouragement to sleep. It took me some time to identify this process as a workable alternative to insomnia and physical discomfort and it is by no means infallible. But I am occasionally astonished, when I reflect upon the matter, at how readily I seem to get through, night after night, week after week, month after month, what was once an almost insufferable nocturnal ordeal. I wake up in exactly the position, frame of mind, and state of suspended despair with which I went to bed—which in the circumstances might be thought a considerable achievement.

This cockroach-like existence is cumulatively intolerable even though on any given night it is perfectly manageable. "Cockroach" is of course an allusion to Kafka's Metamorphosis, in which the protagonist wakes up one morning to discover that he has been transformed into an insect. The point of the story is as much the responses and incomprehension of his family as it is the account of his own sensations, and it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims. Helplessness is humiliating even in a passing crisis—imagine or recall some occasion when you have fallen down or otherwise required physical assistance from strangers. Imagine the mind's response to the knowledge that the peculiarly humiliating helplessness of ALS is a life sentence (we speak blithely of death sentences in this connection, but actually the latter would be a relief).

Morning brings some respite, though it says something about the lonely journey through the night that the prospect of being transferred to a wheelchair for the rest of the day should raise one's spirits! Having something to do, in my case something purely cerebral and verbal, is a salutary diversion—if only in the almost literal sense of providing an occasion to communicate with the outside world and express in words, often angry words, the bottled-up irritations and frustrations of physical inanition.

The best way to survive the night would be to treat it like the day. If I could find people who had nothing better to do than talk to me all night about something sufficiently diverting to keep us both awake, I would search them out. But one is also and always aware in this disease of the necessary normalcy of other people's lives: their need for exercise, entertainment, and sleep. And so my nights superficially resemble those of other people. I prepare for bed; I go to bed; I get up (or, rather, am got up). But the bit between is, like the disease itself, incommunicable.

I suppose I should be at least mildly satisfied to know that I have found within myself the sort of survival mechanism that most normal people only read about in accounts of natural disasters or isolation cells. And it is true that this disease has its enabling dimension: thanks to my inability to take notes or prepare them, my memory—already quite good—has improved considerably, with the help of techniques adapted from the "memory palace" so intriguingly depicted by Jonathan Spence. But the satisfactions of compensation are notoriously fleeting. There is no saving grace in being confined to an iron suit, cold and unforgiving. The pleasures of mental agility are much overstated, inevitably—as it now appears to me—by those not exclusively dependent upon them. Much the same can be said of well-meaning encouragements to find nonphysical compensations for physical inadequacy. That way lies futility. Loss is loss, and nothing is gained by calling it by a nicer name. My nights are intriguing; but I could do without them.

—This is the first of a series of short reflections by Tony Judt.

Tuesday, December 15, 2009

Tis the Season

Tis The Season that approaches rapidly, and yet so far out of reach for this fellow. They call it the season of giving, sharing, and the calendar points to one magical day of joyous celebration. Getting to that day is full of anxiety that could easily turn to panic as no one wants to be left out of this celebration. Our minds are consumed in shopping, decorating, wrapping, baking, all these joyous activities that prepare us for this annual event. It is the season of giving and requires a certain measure of personal participation in these various functions if we are to partake in this special day.

This season, imagine not being able to wrap your gifts or tie those holiday bows. Imagine not being able to shop till you drop, stand in long lines, lose your keys or forget where you parked your car. Imagine not being able to partake in any of this. Imagine this season you are bound in a motionless body that moves only in different directions by means of a motorized wheelchair.

This is the case with many people who are coping with ALS (amyotrophic lateral sclerosis) or better known as Lou Gehrig's disease. ALS attacks the neurons that are attached to the muscles. The result is gradual paralysis. As those with the disease usually die from asphyxia because their diaphragms no longer work, and about 80 percent die within five years of the diagnosis.

This season hits me hard as ALS does not allow me to participate in ways I fondly remember. It was my job to wrap all the presents because I did it best and that contributed to my joy. It was my enjoyment to fill the stockings with the oddest of delightful novelties. Most of all, it hurts this season not to be able to light up my wife's pretty face with a very special gift. This season ALS forces me to partake with eyes wide open and a half-joyous smile.

This season would be magical and special if ALS had a gift of a cure. The season seems to be like many before it, a season without a cure, no cure, no where on the horizon.

If you would like to give the greatest gift without losing your keys or your car, consider a gift to your favorite ALS charity. This is the gift that won't be the wrong color or the wrong size. It will be the gift that puts smiles all around including one for me. Tell them Dr. JM Charcot sent you.

May I suggest, The ALS Association

Happy Hannukah & Merry Christmas

Monday, December 14, 2009

Things We've Learned To Achieve Less Smoke and More Fire...

...and more heat.

This autumn we've been using a high-efficiency woodburning fireplace insert. It generates an incredible amount of comfortable heat.

There is one very big lesson that we've learned -- never let the embers get cold. Restarting a cold fire is difficult, requires kindling, and generates more smoke than warmth until the chimney and firebox get hot again. Keep stoking the fire continuously and you get the best, most efficient results. Simple and continuous is the way to go.

When it comes to ALS awareness and advocacy, December has been the opposite of June in many ways. Just six months ago we had a roaring fire of ALS buzz in the media and among our citizens as we approached July 4's 4 ALS activities in professional ballparks throughout the country. The rage and awareness were hot.

Six months later the ALS outrage embers are almost out. We'll restart them, but that's inefficient. Why don't we design ways to stoke the ALS rage year-round?

Are we all smoke and no fire at the moment? We should never settle for smoke unless it's telling us, "Habemus cure."

Saturday, December 12, 2009

The top selling iPhone medical app of 2009

“Kara Lynn has amyotrophic lateral sclerosis, or A.L.S., which has attacked the muscles around her mouth and throat, removing her ability to speak. A couple of years ago, she spent more than $8,000 to buy a computer, approved by Medicare, that turns typed words into speech that her family, friends and doctors can hear…

Still, advocates argue, advances in computing and easy-to use speech software have opened doors to use cheap mainstream alternatives. Indeed, the price drops have made it possible for A.L.S. assistance groups to buy dozens of netbooks, install specialized software like Proloquo2Go and lend them to clients.”

The top selling iPhone medical app of 2009

Posted using ShareThis

Thursday, December 10, 2009

We Need To Accommodate More Than "Four Years And Out."

Often ALS takes around four years from diagnosis to funeral. Some people die sooner, and some live on for many more years, but in less time than it takes to get a college education, many people go from healthy to dead.

That makes a revolving door of incoming and outgoing patients and advocates.

  • Freshmen -- Patients and families get the diagnosis, often after having chased many wrong diagnoses. They google and ask questions. They want to fight this disease. The freshman advocates want to act rather than react, and they want to make a difference. This is a time to learn and discern.
  • Sophomores -- By the end of a year, families realize that the only treatments the least bit "promising" (we always use air quotes when using the word promising in relation to ALS) are experimental. It can be difficult to qualify for clinical trials if one's life expectancy is short. There are tempting and expensive offshore possibilities to explore. Anger and outrage set in. The sophomores make wonderful advocates because they are full of fire about the travesty that there are no effective treatments.
  • Juniors -- If the patient has lasted this long, life becomes steadily more difficult. Speech may be gone. Technology comes to the rescue. This is the year of physics training. Patients and caregivers learn more about gravity than they ever wanted to know. Fluid dynamics are challenging, too. The outrage is still there, but the everyday dealings with the disease make letter writing and travel on behalf of the cause difficult if not impossible.
  • Seniors -- By the end stages of ALS, families have learned to pick their battles. Energy is a precious commodity, and trips and messages to legislators aren't always possible. The end of the ALS journey is a complicated puzzle of hard work, acceptance, and grief. Morrie Schwartz explains it better than I.

Many ALS advocacy efforts are geared to this transient patient population. There are beginner informational sessions and opportunities. There are opportunities to advocate for those dealing with ALS who have the time, energy, and means to do so. The existing advocacy template seems to be a nice fit for the newly diagnosed who want to fight the status quo and make a difference for a couple of years.

What have we been doing with and for the patients who have slower cases of ALS and live much longer? What have we been doing with and for the caregivers and families who want to continue the fight until the disease is conquered? Some of us refuse to move on. Does the annual advocacy conference content work for people who have been returning relentlessly for six or seven or eight years? Does the process lead to constructive roles for those who have been fighting a frustrating battle for ten years?

It should not be a "four years and out" proposition. An advocate who has been tilting at windmills for ten years has much to offer but won't sit still for the same "promising" talk that he or she has heard year after year after year.

It would seem to be a good goal for 2010 to increase both the numbers and the depth of advocates in 2010 by looking beyond the four-year program.

Tuesday, November 17, 2009

Smoking May Now Be Considered An Established Risk Factor For ALS, Also Known As Lou Gehrig's Disease

Findings published in the Nov. 17, 2009, issue of Neurology

While previous studies have indicated a "probable" connection between smoking and ALS, a new study published in the Nov. 17, 2009 issue of Neurology®, the medical journal of the American Academy of Neurology, states that smoking may now be considered an "established" risk factor for Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's disease.

The findings come from Baystate Medical Center neurologist Dr. Carmel Armon, an ALS researcher and neuroepidemiologist, who came to this conclusion using evidence-based methods to perform a rigorous analysis of studies examining the link between smoking and developing ALS -- a fatal neurodegenerative disease affecting the motor nerves and the voluntary muscles.

"Application of evidence-based methods separates better-designed studies from studies with limitations that may not be relied on. The better-designed studies show consistently that smoking increases the risk of developing ALS, with some findings suggesting that smoking may be implicated directly in causing the disease," said Dr. Armon, a professor of neurology at Tufts University School of Medicine and chief of neurology at Baystate Medical Center in Springfield. He is also a fellow of the American Academy of Neurology.

According to Dr. Armon, identifying smoking as an established risk factor for ALS has three implications.

"First and foremost the findings provide a link between the environment and the occurrence of ALS, where none had been previously identified with this level of certainty," said Dr. Armon.

"Additional implications are that since smoking has no redeeming features, avoidance of smoking may reduce the occurrence of ALS in the future, and since some of the mechanisms by which smoking causes other diseases in humans are understood fairly well, recognizing its role in the occurrence of ALS may help pinpoint the biological processes that initiate the disease," added the researcher.

The Baystate Medical Center neurologist noted that focusing on processes at initiation of sporadic ALS, and close to it, may provide new avenues to treatment to stop its progression.

"This has been realized in some animal models of familial ALS, but not in humans. The hope that these concepts may apply to sporadic disease and change its outlook in the future is supported by establishing the association of smoking with ALS occurrence," concluded Dr. Armon.

ALS takes the lives of half of those affected within three years of onset of weakness, with less than five percent surviving more than 10 years. Some 90-95 percent of cases appear to occur at random ("sporadic cases'), with 5-10 percent of cases having an affected blood relative ("familial cases"). An altered gene, several of which have been identified, is implicated in causing familial ALS. Prior to this report, no external factors have been implicated with this level of confidence as contributing to the occurrence of sporadic ALS.

Thursday, November 12, 2009

Nobody Tells a Dying Guy to Shut Up

Dave Chilcoat and his wife Beth came to Columbus, Ohio, in 1970 to start Young Life, a ministry dedicated to introducing adolescents to Christ. Ten years later, he felt called to law school and subsequently practiced law for 25 years. Blessed with work, four kids, (then) six granddaughters, golf to play and plenty of Pittsburgh sports on TV - Dave’s life was full.

In 2003, Dave was diagnosed with ALS (Lou Gehrig’s disease). With that diagnosis, Dave and Beth’s circumstances changed dramatically, but their God did not.

Day by day, as ALS literally stole Dave’s health and strength, they watched the amazing miracle of God giving each of them spiritual strength in even greater abundance. Together they came to know God’s joy and His enabling power as He walked them though those difficult years.

Faced with the reality of death, Dave chose life. He captured and commented on the experience of living in dying through an online journal, a candid account of parallel progression - physical decay and spiritual growth. Dave wrote weekly for nearly three years and his chronicle was read by tens of thousands around the world. Like the Psalmist, he described his situation, poured out his heart and witnessed to God’s presence in it all.

Beth compiled this journal excerpt, which follows the progression of the disease, highlights their devotion to one another, and continues Dave’s remarkable expression of love for and faith in Jesus Christ with intensity and humor.

Dave taught thousands how to live through his Young Life ministry, speaking and teaching, and day-to-day faith. With this book he guides us through death into new life, trusting in the power of God’s love.

Paper or Hardback

Tuesday, November 10, 2009

Michael Goldsmith Remembered

On July 4, 2009 Major League Baseball launched an ALS Awareness campaign, commemorating the 70th anniversary not just in Yankee stadium, but also in every league ballpark where baseball was played that day. And MLB pledged that the anniversary events were just the beginning of an ongoing commitment to the ALS cause.

Michael Goldsmith had grown up in New York, made what he knew was likely his final trip to his hometown. He took the field in Yankee Stadium and threw out the ceremonial first pitch to a standing ovation. “ALS robs us of our future, MLB’s decision has produced renewed hope.”

He knew, of course, that any hope would come too late for him. On Sunday, Nov. 1, one year to the date that his essay appeared in Newsweek, Michael Goldsmith died of respiratory failure due to ALS.

He was 58 years old.

Monday, November 9, 2009

“What Would you Fight For?”

Rev. Howard J. Kenna, C.S.C., Memorial Director of Notre Dame’s Center for Zebrafish Research, uses adult stem cells in Zebrafish to study how neurons regenerate. The work holds promise for treatments for such human problems as Glaucoma and Macular Degeneration in the eyes, Alzheimer’s and Parkinson’s in the brain, and even spinal cord injuries.

Research by David Hyde.

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.

Monday, September 28, 2009

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.

Sunday, September 27, 2009

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.

Friday, September 18, 2009

Nothing Is Easy With ALS

Please watch this video news report:

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.

Wednesday, September 9, 2009

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...

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

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.

Saturday, September 5, 2009

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

Thursday, September 3, 2009

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.

Wednesday, September 2, 2009

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?

Tuesday, August 18, 2009

ALS Is A Stress Test For Healthcare Delivery

Every day a healthcare provider will put a cardiac patient on a treadmill and push the patient toward some limits just to reveal whatever weaknesses may be lurking in the cardiovascular system.

Turnabout is fair play.

Let's put U.S. healthcare delivery on a treadmill. We'll program the treadmill to move at a really fast speed. We'll put a steep uphill climb. The treadmill now represents a stress test for U.S. healthcare delivery.

Patients with ALS and their caregivers present this stress test to U.S. healthcare delivery every day, and the weaknesses are clear and frustrating and wasteful. Our legislators should be talking to PALS and CALS (even though they don't jump up and down and rant and rave at meetings). They have insights into the system that have nothing to do with the controversies of funding. They know where there are wasteful processes that damage their health and the health of their caregivers. These wasteful processes also waste a lot of money regardless of who is paying the bills.

ALS moves at a rapid clip with physical changes happening much faster than healthcare is delivered. Many caregivers feel like they're always throwing the ball five yards behind the receiver... just because healthcare delivery does not always deliver promptly or accurately.

Ask a person with ALS about the medical equipment errors and outrageous prices and lack of focused selection. If the dealer has a Model X in inventory, will the patient get a Model X rather than the more appropriate Model Y? Can the Model Y arrive before the patient is ready for Model Z? Medicare buys a lot of inappropriate equipment.

Ask a person with ALS about trying to get an appointment with a specialist such as a pulmonologist. Will the scheduling clerks insist on the six-week lead time for a new patient even though the patient's breathing will be significantly compromised in six weeks? Will the scheduling clerk even ask the caregiver what might be convenient?

Ask a person with ALS about how the hospital that inserts a feeding tube doesn't take fifteen minutes to show a family how to use it as a part of the procedure but rather has a home-healthcare agency set up a training appointment in four days. So much for good nutrition for four more days.

Ask a person with ALS about how frustrating it is to fill out clipboards with redundant forms for each new specialist. Medical science has proven better outcomes for people with ALS with a multidisciplinary team approach; however, there is no such thing as teamwork in medical records or paperwork in our system.

If we want to reduce expensive waste and improve quality in the U.S. healthcare delivery system, we should be paying attention to the insights that come from the ALS stress test. We have a healthcare delivery system that likes to move at its own pace and do things they way it does things. When ALS tries to speed up the pace and gives the system a steep climb, our existing healthcare delivery system can't handle the treadmill. Ask someone with ALS or a caregiver.

Friday, August 14, 2009

Oh, Canada!

ALS Canada (@alscanada on twitter) is in a race for Canadian twitter notoriety (and there are funds to be awarded to the winner).

Please click on this link for Toronto Twestival and vote for @alscanada .

If you tweet, @alscanada is a treat to follow. If you don't tweet, following @alscanada is a good place to start.

This is getting national media attention in Canada. It's an easy way to boost a creative ALS organization and put ALS in the spotlight. You don't have to be Canadian to vote, eh. Shoot, you don't have to tweet to vote.

Saturday, August 8, 2009

Can You Find ALS?

Please use the link below and try to find ALS --

Did you find it?

Do you think that the medical coders who do physicians' patient billing records find it (remember, the doc probably scrawled ALS on the paperwork)?

Do you think that the coders who enter death certificate data find it (who knows what the doc scrawled on the death certificate)?

Thursday, August 6, 2009

Who Answered Our Questions Before Google?

Interesting tidbit that my friend Google found... unfortunately not soon enough for the comments period window... but nonetheless it's interesting.

[Federal Register: May 28, 2009 (Volume 74, Number 101)]
[Page 25552-25553]
From the Federal Register Online via GPO Access []
Centers for Disease Control and Prevention

Proposed Data Collections Submitted for Public Comment and
In compliance with the requirement of Section 3506(c)(2)(A) of the
Paperwork Reduction Act of 1995 for opportunity for public comment on
proposed data collection projects, the Centers for Disease Control and
Prevention (CDC) will publish periodic summaries of proposed projects.
To request more information on the proposed projects or to obtain a
copy of the data collection plans and instruments, call 404-639-5960
and send comments to Maryam I. Daneshvar, CDC Acting Reports Clearance
Officer, 1600 Clifton Road, MS-D74, Atlanta, GA 30333 or send an e-mail
Comments are invited on: (a) Whether the proposed collection of
information is necessary for the proper performance of the functions of
the agency, including whether the information shall have practical
utility; (b) the accuracy of the agency's estimate of the burden of the
proposed collection of information; (c) ways to enhance the quality,
utility, and clarity of the information to be collected; and (d) ways
to minimize the burden of the collection of information on respondents,
including through the use of automated collection techniques or other
forms of information technology. Written comments should be received
within 60 days of this notice.
Proposed Project
Registration of individuals with Amyotrophic Lateral Sclerosis
(ALS) in the National ALS Registry--New--Agency for Toxic Substances
and Disease Registry (ATSDR), Coordinating
[[Page 25553]]
Center for Environmental Health and Injury Prevention (CCEHIP), Centers
for Disease Control and Prevention (CDC).
Background and Brief Description
On October 10, 2008, President Bush signed S. 1382: ALS Registry
Act which amended the Public Health Service Act to provide for the
establishment of an Amyotrophic Lateral Sclerosis (ALS) Registry. The
activities described are part of the effort to create the National ALS
Registry. The purpose of the registry is to: (1) Better describe the
incidence and prevalence of ALS in the United States; (2) examine
appropriate factors, such as environmental and occupational, that might
be associated with the disease; (3) better outline key demographic
factors (such as age, race or ethnicity, gender, and family history)
associated with the disease; and (4) better examine the connection
between ALS and other motor neuron disorders that can be confused with
ALS, misdiagnosed as ALS, and in some cases progress to ALS. The
registry will collect personal health information that may provide a
basis for further scientific studies of potential risks for developing
During a workshop held by The Agency for Toxic Substances and
Disease Registry (ATSDR) in March 2006 to discuss surveillance of
selected autoimmune and neurological diseases, it was decided to
develop a proposal to build on work that had already been done and
coordinate existing datasets to create a larger database, rather than
to start from scratch with medical records review and physician
Four pilot projects were funded to evaluate the accuracy and
reliability of existing data from the Center for Medicare and Medicaid
Services (CMS) and various datasets from the Veterans Administration.
Preliminary results indicate that additional ways to identify cases of
ALS will be necessary to increase completeness of the registry.
Therefore, ATSDR developed a Web site where individuals will register
and will also have the opportunity to provide additional information on
such things as occupation, military service, and family history of ALS,
which is not available in existing records.
The registration portion of the data collection will be limited to
information that can be used to identify an individual to assure that
there are not duplicate records for an individual. Avoiding duplication
of registrants due to obtaining records from multiple sources is
imperative to get accurate estimates of incidence and prevalence, as
well as accurate information on demographic characteristics of the
cases of ALS.
In addition to questions required for registration, there will be a
series of short surveys to collect information on such things as
military history, occupations, and family history that would not likely
be available from other sources.
This project proposes to collect information on individuals with
ALS which can be combined with information obtained from existing
sources of information. This combined data will become the National ALS
Registry and will be used to provide more accurate estimates of the
incidence and prevalence of disease as well as the demographic
characteristics of the cases. Information obtained from the surveys
will be used to better characterize potential risk factors for ALS
which will lead to further in-depth studies.
The existence of the Web site will be advertised by ATSDR and
advocacy groups such as the Amyotrophic Lateral Sclerosis Association
(ALSA) and the Muscular Dystrophy Association (MDA).
There will be approximately 30,000 individuals living with ALS when
the National ALS Registry is initiated, and it is estimated that
approximately 25% of those individuals will also participate
. In
addition, approximately 6,000 people are diagnosed with ALS each year
and we expect about one-third of them will participate in the registry.
Because an advantage to registration is participating in the surveys,
we expect the one time surveys, and the twice yearly survey
participation rate will be 50%.
There are no costs to the respondents other than their time.
Estimated Annualized Burden Hours
Number of Average burden
Data collection instruments/respondents Number of responses per per response Total burden
respondents respondent (in hours) (in hours)
Validation questions (Screener) for suspected 6,000 1 2/60 200
ALS cases......................................
Registration Form of ALS cases.................. 4,667 1 7/60 544
Cases of ALS completing 1-time surveys.......... 2,334 6 5/60 1167
Cases of ALS completing twice yearly surveys.... 2,334 2 5/60 389
Total........................................... .............. .............. .............. 2300
Dated: May 20, 2009.
Maryam I. Daneshvar,
Acting Reports Clearance Officer, Centers for Disease Control and
[FR Doc. E9-12397 Filed 5-27-09; 8:45 am]


Monday, August 3, 2009

'LEAVE THEM LAUGHING' DEMO - A Musical Comedy about ALS

Ninety riveting minutes of songs about life, and quips about death, from the wheelchair of a woman who vows to exit the stage with a smile on her beautiful face.
Once a nationally-known performer of ballads, skits and self-parody, now fated by Lou Gehrig’s Disease to perish within months, the remarkable Carla Zilbersmith was diagnosed in 2007 and given less than four years to live. She will leave a teen-aged son, a few fans and students who adore her, and this 90-minute pre-mortem retrospective of a life lived fully, but far too fast.
On stage in actual and dramatized flashbacks to her giddy days as a comedienne and chanteuse, and on camera in the unashamed current reality of her condition, "Leave 'Em Laughing" tells Carla’s own glad, sad story in her own voice through diary entries, travelogues, interviews and skits. Films of her last brave travels to Australia, Britain and Mexico demonstrate the ferocity of her intention to suck the last molecules of pleasure from her life.
“A journalist asked me what I wanted to do before I died,” Carla says, “and I quite naturally answered: Johnny Depp.”
She is confident that a musical comedy about the nearness of death will be a unique and compelling vehicle to engage an audience with a subject that might otherwise be shunned for its graphic toll of suffering and pain.
But beyond the inexorable progress of the disease is the inescapable truth that all of us, sooner or later, will have to confront our own individual demise. No one could serve as a more inspiring forerunner along that path than Carla Zilbersmith, who faces her own extinction with wit, wisdom, courage, music and love. That she will die before her audience, her son, her friends, and her parents, there is little doubt. That they need grieve for her suffering while she still is living, there is no reason. Later, she says, there will be too much time for tears and sorrow.
We see a universal appeal for this unique portrayal of a woman’s capacity for humor in the face of tragedy. Carla’s outrageous and colorful sense of humor remains intact, even as her physical body weakens; who else would have the words Out of Order tattooed on her feet!
As an Academy Award-winning director, no one knows the power and impact of the motion picture better than John Zaritsky.
ALS imposes a cruel and literal deadline; Carla has up to two years to live. Our goal — and hers — is to bring the film to the screen for her to see.
We plan a 90-minute version for theatrical and festival release and a 60-minute documentary for international and domestic broadcast.

Download our Press Kit (PDF)

Magic Flute Films Demo

Monday, July 27, 2009

ALS Registry For 250 Please, Alex

Since many of us have questions about the status of the ALS Registry that we worked hard to have passed into law, perhaps we could have a little fun and ask for information in the form of a question. Below we have enough clues for a full Jeopardy! category --
  • The news from the June meeting of investigators running the ALS Registry pilots
  • The spending to-date on the pilots
  • The next set of goals and deliverables for the pilots
  • The date for implementation of the full registry
  • The status or composition of the ALS Registry Advisory Committee

Friday, July 17, 2009

Is RT Turning The Fight Against ALS Into A Team Sport Rather Than A Competition?

Could it be that the simple concept of the retweet is breaking down decades of fences and walls between ALS organizations?

We finally see some ALS organizations making great comments and other organizations and individuals are retweeting (with full credit to the originators) to their followers.

If you don't tweet, I urge you to get a twitter account and follow some ALS tweeters. It's cooperative. It's energizing. It's a great way to spread the word.

Many with an interest in conquering ALS keep spinning each others plates rather than letting them crash to the ground.

The following blog post has some suggestions:

Be there nimbly or be square. Cultural process change of historic proportion could be in the making.

Thursday, July 9, 2009


Tina Taconic from San Jose Wins

The research department at St. Decon Gene Labs unamiously nominates Tina Taconic for Mouse of the Month. This award is a result of her commitment to finding a cure and an end to ALS. A wonderful mother of 16 that has become one of the best in her strain working with the research team. Her and most of the children have signed a contract paying her breeder $2000.00 for each sibling that joins the program. She comes from a family of dedicated mice dating back several years to the 1950's.
We found Tina at rest following a long day of several injections in cage A42. We ask if she had a moment for a few questions about her commitment. "I signed up for the long haul but it would be nice to give our species a rest and move on to something new". "I would like to see new funding and research using Stem Cells of any kind". We asked her about any possible new developments in ALS. She said, "the team is working very long hours and each day is a new challenge because they always come up with a new compound to test on me". "Do you get any rest or time off?" "Thats silly, I get a treatment and after a few hours they want me walk on the treadmill and do my normal series of exercises". Our last question was about the research time line. "Do you think a cure is in reach?" Tina looked at us with those tiny black eyes and said, "you know it takes a lot of money to find out whats causing ALS". "We need a Presidential Mandate that will challenge a cure for ALS in 10 years or less and provide the funding for it". Whatever gave you that idea? "Well , sending Mice into space is just too easy these days, the nation is ready for a new Challenge". With a statement like that we see why Tina is Mouse of the Month.

Monday, June 29, 2009

MLB, Lou Gehrig, the 4th of July, and a new reality

As the 70th anniversary of Lou Gehrig’s “luckiest man” speech approaches, I’ve been watching clips of the Iron Horse. Before 2005, I had never really given Lou Gehrig much thought. Baseball wasn’t on my radar growing up in a family of girls, in a small town in Alaska. Oh sure there was the occasional evening at the local ball field watching the Senior League boys playing, but that had nothing to do with Lou Gehrig. TV was a week delayed, so baseball games on TV had no relevance to me. (David Cassidy and the Partridge family, now that was worth the wait!). In 1998 our son started playing Little League baseball, and Lou Gehrig was still not on my radar. But he was in 4th grade and baseball was his life, and he had to write a research paper, Lou Gehrig blipped briefly on the radar. Our son chose to write his paper on Lou Gehrig. After reading his paper, I remember thinking, “wow, Lou Gehrig was a great guy, and yuck, what a horrible disease he had.” Never really gave Lou Gehrig a second thought. He was a guy with this amazing consecutive game streak, a home run hitting all star, and part of one of the greatest baseball teams ever in history. But still, kind of one of those people you hear about, file it away and they never seem real…just a guy in a history book.

Something happened yesterday when I was watching one of the Gehrig clips. I had seen the clip of him giving his “Luckiest Man” speech, many different times. But I saw a clip where he was talking about something else; he was talking about something ordinary, making a hand gesture that was similar to one I’d seen my husband make many times. It suddenly hit me. This guy, Lou Gehrig, he was a real person. He was a real person that lived life here on this earth, and did the same normal everyday things that my husband and I did. He brushed his teeth, combed his hair, got dressed, and lived a married life. That simple familiar hand gesture finally dissolved the myth. He went from this person in history, this baseball extraordinaire…into this normal guy doing what he loved, who was really good at it. He became real.

Before 2005, ALS-Lou Gehrig’s disease was just a myth to me. Something that was out there, but something I never really knew first hand. And honestly, who wants to know ALS first hand? It’s a horrible disease that steals from people their movement, their breathing, their speaking…all that is slowly, or quickly taken from you until you can’t walk, can’t move your arms, can’t talk, and eventually can’t breathe. This happens while your mind is still sharp as a tack and you become trapped inside this shell of a person that you used to be.

On June 23, 2005, the myth became the reality. My husband was diagnosed with ALS-Lou Gehrig’s disease. Lou Gehrig was no longer just this historical guy who lived briefly and sporadically and in the fringes of our lives. He was now up front and center….standing on our home plate. In the beginning it didn’t seem so bad. My husband has a slow progression of the disease, and it was a couple years before the full impact of the disease hit home. Now we live with wheelchairs, stair lifts, and a dandy white handicap assessable mini van that’s about at the opposite end of the spectrum as you can get from the convertible BMW my husband wanted to drive in retirement. ALS, the reality steals from you in so many ways you never really thought about. Lou Gehrig lives fulltime in our dug out, as good as a guy as he was, his disease presence is just too real now. We don’t like it.

To most people my age, ALS is myth…you read about Lou Gehrig, you see his statistics, he was this baseball player way back in the day, who got a “bad break” being diagnosed with ALS. But come on, Lou Gehrig died 68 years ago. What have we heard about ALS, publicly, out in front of the masses like we hear about cancer, since that time? Not much. That makes ALS seem unreal to people…it’s just this disease that this really great baseball player had, years and years ago. Unless you know someone personally who has ALS, you’ll probably never run across someone who has ALS. The other problem with ALS is, most people who are diagnosed with this disease, die within 2-5 years. It’s a really crummy way to spend the last years of your life, and it takes its toll on those who are left behind in its wake.

Because people die from this disease, because there is no cure, because there is no long term life extending treatment, there are no survivors. Let me repeat that, no one survives ALS. The myth continues because there are no survivors to shout from the rooftops how horrible this disease is, and why we need to rally around, raise money, and find a stinking cure. We need to make aware that this disease can strike anyone, anywhere, at anytime in their life. We need to make aware that this disease is not just “something” named after baseball great Lou Gehrig. We need to make aware that this disease strikes real people; moms, dads, grandparents, sisters, brothers, aunts, uncles, nephews, nieces, baseball players, boxers, football players, soccer players, golfers and veterans.

The urgent thing that needs to be done is make people care about this disease. We need to move it from a myth to a reality. We need to make people realize this could happen to them, happen to their family… normal everyday people who used to be able to brush their teeth, comb their hair, lift a fork, dress themselves, drive, score touchdowns, and swing a bat. All that is lost with ALS and those normal everyday hand gestures need to be remembered when we fight for this disease.

This 4th of July, that can happen. This 4th of July is the 70th anniversary of Lou Gehrig’s “luckiest man” speech. Major league baseball stadiums throughout the country will be commemorating Lou Gehrig’s speech. Major League Baseball is partnering with 4 major ALS groups to raise awareness, and money. These four groups, have all been working, in their own way to try and find an end to this disease. But maybe under Major League Baseball’s umbrella, maybe this fight for awareness will hit home with those in attendance. Maybe someone out there in one of those ballparks will donate THE dollar to find a treatment to slow this rotten disease down. If you can’t make it to the ballpark, or your MLB team is away on the 4th, there are other ways to help.

Maybe on the 70th anniversary of Lou Gehrig’s speech, ALS, the disease, will move from the myth and legend of a great baseball player, to the reality of a cure.

For more information:

ALS Flashback - Katie Couric

Jenifer Estess-Project ALS-

book "Tales from the Bed"

Today (video)- Katie Couric pays tribute to Project A.L.S. founder, Jenifer Estess. - December 17, 2003

NBC's Robert Bazell reports on Project A.L.S. gene therapy breakthrough - August 8, 2003
HBO documentary produced by Academy Award winner Sheila Nevins.
Katie Couric covers the early impact of Project A.L.S. - July 6, 2000
NBC Nighly News- Project A.L.S. profile - March 1, 2000
Charlie Rose interviews Jenifer Estess - February 16, 2000

Wednesday, June 24, 2009

Dear Boards Of Directors

Did you receive some staff reports in the last few months that your organization is on Facebook now? Did that get an enthusiastic nod of approval from the board? How about the report that you're on twitter? Did the members give a big thank you to the staff for making sure you're where it's at (whatever "it" is)?

And what does all of this mean? Social media can be a two-edged sword. Smart organizations look before they leap... and they figure some important things out.

Have you duplicated content already on your organization's website and now have two or three spots to maintain? Are you taking staff time just to be in different places? What's the plan? What's the goal? What's the prize? What's the point?

Yesterday there was an interesting online chat that @ALSofGNY pointed out to fellow twitterers. It was held by . A quote from that chat should be displayed in every not-for-profit boardroom in the nation: " media is not about promoting your organizations. It's about becoming part of the conversation." (Nancy Schwartz of ).

Next time you get a staff report that mentions Facebook, how about asking how the organization has become part of the conversation? Better yet, perhaps you should ask your board if you  even want to be part of the conversation?

Do you have a neighbor who continues to plant shrubs and flowers yet can't keep the grass cut? It's good to do a check of your not-for-profit basics before you put down roots in social media.

If you're not able to respond to your constituent emails today, then it's time to deal with that problem and postpone the social media which demand a commitment to constant, timely response. If your website is not well-maintained, then it's time to deal with that problem and skip social media for now. If you're not keeping up with thank you letters for donations, then you had best fix that problem before engaging in online, public conversations.

If you don't allow staff members to engage in public media conversations, then your static presence on Facebook and twitter and other social media sites is just making busywork (and makes you look pretty foolish). If you twitter stream is just press releases, then you're neither contributing nor receiving any of the unique energy of twitter.

If you don't have staff members capable of engaging in public conversations, you have an opportunity to hone some new staff skills and responsibilities. It's not about technology. It's not about traditional press releases. It's a conversation. It's a chance to talk with your clientele and peers. It's a big opportunity.  It's a lot more than putting up a Facebook page and walking away for a month, though.

It's not about simply "being on" Facebook and Inspire and Patientslikeme and twitter and and alsforums and myMDA. It's about targeting constituent groups and being an active part of the conversation. It's about promoting the cause rather than your specific organization.

This is the perfect opportunity for your board and staff to sit down and figure some things out together.

Different web-based media appeal to different constituencies. One size never fits all. Figure it out. Target and engage appropriately. Ask why you would want to engage on a specific medium. Figure it out. What are the strengths of each medium. Figure it out. What does each add uniquely to your ability to be a part of the conversation? Figure it out. Can you talk with people rather than to people in a public space? That's a big question. Figure it out.

Don't give those approving nods until you try to figure it out. Having a Facebook page and 500 "friends" means nothing if you're not part of the conversation.

We look forward to you being part of that conversation.