Tuesday, August 31, 2010

Read My Bracelet. Read My Lips. I Have All My Marbles.

One of the outrageous facts that most people with ALS learn quickly is the cluelessness of healthcare professionals regarding their disease. It seems like they don't cover the basics of the disease in medical and nursing schools... or else for some reason students don't pay attention that day in class.

This morning there was a feature in the Wall Street Journal on the new trends in medical alert bracelets. They have moved from the basics to fashion statements.

We all understand the obvious need for such warnings for healthcare professionals when an unconscious patient may have diabetes or a pacemaker.

Perhaps we need some medical alert bracelets (or even instructions like they put on pillows) for people with ALS. We could call them I-Have-All-My-Marbles tags.

"I have ALS. You probably don't remember what this means because you were taught it is 'rare' so you didn't pay all that much attention in school. Guess what. It's not so rare. I have it. I have ALL of my marbles. Every last marble. It's simply a little difficult to understand my speech, so please read my lips and listen closely when I speak. Remember, I have all my marbles. My neck is extremely weak. If you move me, please remember that my head full of marbles needs some support because my neck cannot hold it up. I am perfectly capable of making all of my own medical decisions even though my speech reminds you of someone who is sloppy drunk. I have all my marbles. Please talk directly to me. My caregiver will assist with 'translating' my speech for you, but please speak to me. My ears are good. I have all my marbles. I probably have more marbles than many people in this room."

ALS awareness among healthcare professionals should be a priority among the ALS organizations that promote ALS understanding and patient services. We in America should be ashamed of a healthcare delivery system (especially in the primary care arena) that is largely clueless on delivering effective and respectful care to those with ALS.

Saturday, August 21, 2010


Another NFL player has been diagnosed with ALS.
Perhaps one of our ALS organizations needs to start some advocacy groups based on vocations. We could have Football Players Against ALS, Veterans Against ALS, Teachers Against ALS, Broadcasters Against ALS, Firefighters Against ALS, Soccer Players Against ALS, Elderly Homemakers Against ALS, Clerics Against ALS, Young Adults Against ALS.
Some of those groups seem to be growing at startling proportions.
Where is our Registry?

Friday, August 20, 2010

"No Harm, No Foul" Must Stop!

For many years people who have seen healthcare professionals miss ALS diagnoses have wondered if there's not a subliminal "no harm, no foul" waiver given to those errors. After all, there is not treatment or cure. If it had been diagnosed correctly, there wasn't anything that the doctor could have done, anyway. That's wrong, but it happens every day.

The recent buzz over Lou Gehrig and head trauma has moved ALS into the world's media for a few days, and there was an interesting statement in Time -- http://www.time.com/time/health/article/0,8599,2011489,00.html
Making such a conclusive diagnosis and distinguishing ALS from the other related diseases has not been critical until now, because there have been few effective treatments for ALS.
No harm, no foul? It's time that we change that. Until we start having cases of ALS diagnosed accurately and promptly, we'll continue to lose precious lives and not know exactly why. That's wrong.

Tuesday, August 17, 2010

Now We're Talking!

Ahhhh... the provocative story in the New York Times is now provoking conversation, and that's good because ALS gets so little attention.


Interesting points. Let's talk about ALS in the media. Let's talk about head trauma and triggers. Let's get our sports-crazed nation talking about a disease that is full of mysteries yet steals the most fit and talented among us.

And while we talk about the merits and weaknesses of the New York Times story, let's talk about the need for more ALS research. Let's talk about the need to retain data so that the clues are no lost. We need our ALS Registry now! Let's talk about ALS and the military. Let's keep talking!

Next Time You See Somebody On A Motorcycle Without A Helmet

Hand him or her a copy of this article from today's New York Times ...


We won't need helmet laws. The threat of ALS or a similar motor neuron disease should be enough of a motivation.

Perhaps this article will increase the urgency of the DOD ALSRP research. Perhaps this article will get the attention of the CDC so that head trauma history might be included in the ALS Registry.

By the way, Lou Gehrig is our hero -- nothing less.

Friday, August 13, 2010

Collaborate, Collaborate, Dance to the Music!

"Rare Sharing Of Data Leads To Progress On Alzheimer's"
The New York Times
August 13, 2010

“It’s not science the way most of us have practiced it in our careers. But we all realized that we would never get biomarkers unless all of us parked our egos and intellectual-property noses outside the door and agreed that all of our data would be public immediately.”

Sleepy heard an interesting suggestion this morning. Shall we advocate that all grantmaking organizations (including the DOD, NIH, ALSA and the MDA) investing in ALS research make it a requirement that detailed and complete data will be made public quarterly? No sharing, no grant$.

Wednesday, August 11, 2010

What Is Wrong With This Picture?



Today Is A Good Day To Talk About ALS Caregivers

Yesterday we read about JetBlue flight attendant Steven Slater's meltdown.
If you read far enough into the articles, you saw that Slater's father recently died from ALS.
Without regard to your feelings about air travel or passenger and flight attendant behavior, this is a perfect day to talk about ALS caregivers, especially those caregivers who lose a beloved family member to this disease. ALS is a particularly demanding disease, and caregivers not only deal with the physical demands, but they also face a daily realization of the loss that ALS is perpetrating.
Today is a good day to talk about ALS caregivers. If you hear anyone talking around the water cooler about the JetBlue flight attendant, it's a perfect day to talk about ALS caregiving and ALS orphans.

Sunday, August 8, 2010

Here's A Good Read With Room For Some ALS Articles

A few months ago Sleepy subscribed to Neurology Now, a publication of the American Academy of Neurology. It is geared for the layperson. It's an excellent health publication. The articles are relevant to a number of neurological conditions and are much more informative than much health news we get in the general media.
http://journals.lww.com/neurologynow/pages/default.aspx has an online edition and an option to subscribe to the print edition. I recommend it highly. The subscription form has a list where you can select the disease that interests you. ALS / Lou Gehrig's Disease is there. Phew!
It wouldn't be all bad if they got a lot of subscription requests from people interested in ALS / Lou Gehrig's Disease. Actually, it would be great if ALS interest raised some American Academy of Neurology eyebrows.
Since national ALS organizations seem to be hanging out here lately, perhaps their communications gurus might get the idea that Neurology Now might be a great place for some interesting ALS news.

Monday, August 2, 2010

Do You Think FoxNews or CNN Might Like A Statement Or Two?

Last week FoxNews and CNN told of a man with ALS who wanted to end his battle by being an organ donor.

ALS could be the theme of an entire class in medical ethics. Its patients face so many complicated decisions and challenges.

The wish of Mr. Phebus makes spectacular press and got the term "Lou Gehrig's Disease" on major networks. That doesn't happen every day.

Where are our national awareness organizations? We understand that this isn't the context that you would prefer for a discussion of ALS, but how can you pass up this opportunity to talk to FoxNews and CNN about the disease itself? The stories obviously grabbed some statistics from some "authority" (max 20K patients?). Could the media not have used more information about how we suspect that there may be many more cases of ALS in the United States and should know when the registry is implemented. That would be nice to hear on national television, especially since both CNN and the CDC are headquartered in the same city. How about talking about all of the end-of-life decisions that people are forced to make in relatively short periods of time? How about explaining how technology and support systems and informed healthcare professionals who understand ALS make a big difference in those decisions. How about explaining some of the emotional aspects of ALS that take PALS on a roller coaster while they try to make good decisions? How about explaining how thousands of Americans facing the ticking ALS clock are trying to figure out how to give their lives a good finish? How about explaining whether organs from PALS and from families of PALS are even accepted for transplantation? How about using your bully pulpit? How about speaking up? How about raising awareness of ALS in a situation that isn't beautiful but certainly sheds light on the disease? The big network cameras were rolling. The subject was ALS. We expect you to show up and speak up and explain the disease to the world.