And The Answers Are ???

Words from one of the three patients selected to attend the ALS Registry Annual Meeting in July:

Following up from last year, I wasn’t here last year, but one of the big questions I received from patients was, "What were the actions taken from last year’s meeting? Was it productive?" I’m sure many of you knew a great man, Rob Tison, who was here and put a lot of work into trying to give feedback. Just a really good person, and a very smart person. One of the questions I received was, "What was done with that?" How were the questions that were raised last year resolved? I’m sure they all were resolved. I’m sure action was taken, but if not everyone realizes it, it doesn’t do any good.

I find no evidence in the meeting report that the questions were ever answered. I looked and I looked.  It's like the questions just rolled off the backs of everyone.  Click here for the meeting minutes.  If I've missed something, I'm all ears.  We're not so sure that Rob Tison's issues and questions were all resolved. We're not so sure any were resolved.  Time to stop the slow-pitch softball.

It's Simple

"I'm not asking for another $10 million for you until you tell me what you're going to do with it."

-Words of an ALS advocate

http://www.alsa.org/advocacy/legislative-priorities.html 

It's time for a high-level accounting of where the ALS Registry money goes.

It's called good stewardship.

Picture This

In the past week we've learned bits and pieces about various not-for-profits' positions on a number of issues that are important to those with ALS.  There does not seem to be a place where we can read the letters and statements that they have made to government agencies and other not-for-profits about various policies and legislation.

We pretty much have our friend google guiding our way as we stumble along trying to find out about governmental agendas and policy statements that have happened in the past.

Picture how helpful it would be if organizations that take positions or make statements or send letters would simply post them for us to see them as they are made.

It would add perspective and information that would make advocacy efforts much more powerful and cohesive.  Please post those documents in a visible place so we can read them and learn and understand.

It's simple.  Transparency is good.  Timely transparency is best.  Everybody wins.

Times Have Changed, Thank Heavens

Yesterday I saw a new For-Sale sign in front of a home in my neighborhood. 

A couple of decades ago I either would have written down the brokerage phone number and made a call or stopped in at an open house to find the price on the home.  You see, the real estate broker owned "the book," and "the book" had all of the listings and prices.

Real estate brokers controlled the most precious information to potential buyers and sellers.  If you were shopping for a home, you never got to take "the book" home to shop in privacy.  If you just wanted to keep track of asking prices in your neighborhood, the real estate broker controlled that information.  You had to ask.  You could usually get the price, but the rest of the story could be quite selective.

When it was time for serious buyers and sellers to make decisions, brokers had a great deal of power to control the conversation with the information that they chose to share or not share.  And "the book."

Times changed quickly, thank heavens.  Enter the internet.  Consumers demand access to information.  They want to be fully informed as they make decisions.  Real estate brokers have had to change.  They can no longer define the value they add by controlling the information or the conversations.  They have to add value in different ways or find new careers.

And think about the travel-agent industry has changed.  They no longer own sole access to flights and seats and hotel prices.  Travel agents can't make a living today with control of information and access.

And think about the Voluntary-Health-Agency industry.  Whoops.  It hasn't changed yet.  It will.  It must.

And In The "You Can't Make This Stuff Up" Department

Picture this.

• One arm of our government has built a national ALS Registry featuring online information, data entry, and risk factor surveys for people with ALS.  They have spent almost $40 million taxpayer dollars and are asking for more.
• Another arm of our government has just implemented rules for people with ALS who need Speech Generating Devices.  They will not be able to access the internet during a 13-month rental period.  

Duh.  Do these people ever talk to each other

We have just built a very expensive highway and have blocked access to the people who need it most. And those signs that were put up April 1 are going to be dreadfully expensive to take down.

This is just outrageously stupid.

Costco Knows

Costco knows what I eat.  Costco knows if I'm on a diet or am not feeling well.  Costco knows if I'm on a fitness kick.  Costco knows where I live and where I travel.  Costco knows if I'm having a party.  Costco knows.

What if every physician were given a stack of coupons for people diagnosed with ALS that would give them free Costco cards.

$50 per card * n PALS ... we're probably talking about something under $1 million a year.  That's a tenth of what we're asking for the CDC ATSDR ALS Registry for another year.

And Costco can retrieve data and report quickly.

And PALS and families would enjoy those deals on big packages of things.  And doctors feel like heros to patients who get little good news after an ALS diagnosis.

And just maybe we would get some timely insights on how many people have ALS and where they live.

(This was recycled from a 2007 blog post concept, but unfortunately it still works.)
http://www.alscounts.com/slog2010/slogarchive200706.html

How Can I Help?

People want to help their friends, acquaintances, neighbors, co-workers dealing with ALS.  It's a fact.

ALS is a demanding disease and asking for help isn't easy.  You can't go around asking casual acquaintances to do caregiving that involves a suction machine or tush-wiping. 

There are some things that are helpful that involve no special skills or experience or awkward situations.  This is one of the reasons the multi-level marketing of walks has been so successful for fundraising.  People want to help.

Here's another way to help, and it's easy peasy.  Please ask every helpful person you know to tell the government that we need smart rules so that people with ALS have the right to speak and be heard.

So when you hear, "How can I help," you can say, "I have two easy things for you."

1. Please help the Executive Branch hear that some CMS Medicare rules taking effect April 1 just don't make sense for today's speech technology.  Did you see Steve Gleason in the Microsoft ad during the Super Bowl?  Please help make sure that kind of technology (not the world's most expensive) is available to all people who are silenced by ALS.  Click here for a link.

2. Please tell your Member of Congress and your two Senators to support HR942 and S948, with an inclusion for Speech Generating Devices, to put these devices under some rules that would be appropriate for the high tech that they are.  You can go to their websites and submit your thoughts. Elected officials actually like it when individual citizens speak to them.  Here are two links
-- http://www.senate.gov/general/contact_information/senators_cfm.cfm
-- http://www.house.gov/representatives/find/
If you can use the walk software, then you can do this!
You are welcome to use the words of Steve Gleason:

"Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others."

If we can raise millions of dollars and recruit hundreds of thousands of walkers who want to help, we can surely raise voices for the voiceless.  We just need to get all of those helpful people to help in another very easy way.

Thank you.

Let's Have Some March Madness

It's all starting to come together now.

It looks like we have two plays to work on regarding access to Speech Generating Devices and Power Wheel Chairs for people with ALS.

• The Easy Free Throw to get the attention of CMS Medicare (Executive Branch) that their April 1 rules implementation blocks the rights and needs of people with ALS.
• ACTION ITEM:  Please continue to exercise your right to be heard at https://petitions.whitehouse.gov/petition/stall-centers-medicaremedicaid-services-cms-capped-rental-speech-generating-devices-pending-rewrite/Fz8bfNh2
  This is exactly the reason that the White House provides such a space for citizens to be heard.  CMS ultimately reports to the person in the Oval Office.  We need to delay the April 1 implementation of these rules for SGDs (Speech Generating Devices).
• The Picket Fence to get the attention of legislators who have the power to attack the problem with a long-term solution. People with ALS and taxpayers will win.  The key to this play is HR942/S948 Ensuring Access to Quality Complex Rehabilitation Technology Act.  It is essential that Speech Generating Devices be included in this act along with complex Power Wheel Chairs!  This legislation gets these devices out from under rules that simply don't make sense for such technology.
• ACTION ITEM: Please contact your Member of Congress and your two Senators. Most take email on their websites.  Ask for them to support HR942/S948 with an inclusion of Speech Generating Devices.  Most will be in their districts the two weeks following April 15.  It would be a pretty cool civics lesson for us all (including the kids) to make an appointment and stop by and chat.

We need to take and make lots of shots if we are to win. The clock is running. Thanks to all who join the team.  Steve Gleason has already made a huge three-pointer --
http://www.vitter.senate.gov/newsroom/press/vitter-supports-team-gleason-legislation

Thank You For Your #Empowering Leadership, Steve Gleason

The person who stepped up to take a stand on this legislation can neither step nor stand.  Technology enables him to be the eloquent and effective citizen/leader we needed. 

That in itself makes the case.

Action Item! Please read Steve's letter below that was posted on the Team Gleason facebook wall last evening, and contact your Member of Congress and your two Senators.  Yes, you. Now. Please. Thank you.

An Open Letter to Louisiana Senators and Congressmen:

Dear Senators Landrieu, Vitter and all Louisiana Members of Congress,

Recently, legislation was introduced to ensure patient access to quality, complex rehabilitation technology. An example of that technology is my power chair. I cannot imagine living with ALS (or any other physically restrictive disease) without a power chair. It is not only... a necessity, it is a means of independence for me and my caregivers. The bi-partisan legislation introduced is S. 948 and HR 942. While every organization that supports the care of people with physical limitations supports this, not one legislator from Louisiana has signed it as of today.

Adding to this, the Centers for Medicare & Medicaid Services (CMMS) have new rules which become effective April 1st. Exactly the opposite of the legislation above, these superfluous rules will inhibit people from having consistent access to essential communication devices. The term essential is not hyperbole. I use my eyes to type on one of these devices. Essential communication; from requests for food or water, to telling my family I love them, advocating at the United Nations, or open letters to policy makers.

While I am very fortunate to have the ability to own and customize my equipment, most people who are dealing with ALS, and conditions like ALS, do not. Living with a physically debilitating disease is not only a tremendous emotional burden, but a financial one as well. By taking away access to these devices, the CMMS is harming the very people the institution was created to help.

Imagine if your cell phone, tablet and laptop were taken away when you had a hospital visit. While it is logical to rent “simple” machines like a car or a pressure washer for periods at a time, renting complex and customizable technology like a cell phone, tablet or laptop is far less viable, especially when that technology is your only means of connecting to the world.

I was recently in a Microsoft commercial. The commercial shows how transformative technology has been to individuals and the world. Microsoft calls these technologies "empowering". These new rules from the CMMS will quash the power that technology gives people like me... people who intend to be productive and purposeful.

Please sign S 948 and HR 942. And, please introduce immediately an exclusion for Speech Generating Devices (SGDs). Thank you for your attention to this important issue and for your voice in Washington, DC. Through your support, you will also safeguard the voices of thousands of others.

Steve Gleason

 

 

It's your turn. Please take ten minutes, go to your elected officials' websites, and follow Steve's lead.

 

Thanks, all.

 

http://www.house.gov/representatives/find/

 

http://www.senate.gov/general/contact_information/senators_cfm.cfm

 

 

Keep Calm and Stumble On

Yesterday the ALS Association finally issued a statement regarding some of the April 1 Medicare CMS changes related to Speech Generating Devices --

http://www.alsa.org/news/archive/medicare-coverage-for-speech.html

Included is a link to their submission made on the last day of the 2013 public comments period making their case --

https://filemanager.capwiz.com/filemanager/file-mgr/alsa/08_30_13_ALSA_Comments_to_CMS_1526_P__FINAL_.pdf


Yesterday's statement leaves me with three troubling observations --

1. I agree that petitions are not likely to move government bureaucrats, but there was a potentially powerful public comments period that we all missed.  That was the time for citizens to make a number of compelling cases.  That opportunity was blown.  Fixing a problem is always more difficult than it would have been to prevent the problem.
2. There is a legislative item on the table, the Ensuring Access to Quality Complex Rehabilitation Technology Act (S. 948/H.R. 942), that could provide a long-term solution for both Speech Generating Devices and for Power Wheel Chairs.  Elected officials could be moved to make this happen.  Should this not be discussed?
3. The rules go into effect next week, for Pete's sake. Would we have heard anything had a volunteer-ALS advocate not stumbled across the rules changes last week?

And then late last night the ALS Hope Foundation shared this, what seems to be another pertinent public comments period that has only six days left --

http://www.regulations.gov/#!documentDetail;D=CMS-2014-0029-0001

Only twelve comments submitted so far.  Only six days left.

There is a long-term pattern here.  We keep stumbling across things.  We trip over pertinent things that have been be well-kept secrets. Why?  We stumble to defeat ALS.  We are told that the hurdles aren't our problem.

Hiding the hurdles until we trip on them is wrong.  Explaining and discussing the hurdles before we get there is constructive.  Transparency is essential to reach any vision of defeating ALS.

Are We Just April Fools Who Can't See All The Danger Around Us?

An ALS volunteer-advocate literally stumbled across things that we described in our prior two blog

entries earlier this week.

Here is our recap of concerns along with a couple of action items.

Effective April 1, 2014, the Medicare CMS rules for Speech Generating Devices (SGDs) are changing.  They are being classified as durable medical equipment that will fall under a “capped rental rule.”  The taxpayer in me didn’t get too upset until we found out some of the implications.  Medical devices will be rented for 13 months.  Here are some of the gotchas that we think are of concern.  If I’m wrong on any of these, I’m all ears.

• The kinds of device and technology such as the setup Steve Gleason had in the Super Bowl ad will not be allowed because they are not strictly medical devices.  God forbid that you should access the internet. 
• It’s a one-and-done for you.  If you live long enough for some stellar new $500 technology to make your 13-month device obsolete, too bad. 
• If you go into a hospital or move into a hospice during the 13 months, your device will not go with you.  CMS assumes that the facility will have whatever you need.  Right.

There was a comments period to give feedback to Medicare CMS on the rules changes last year.  I had no idea.  Unfortunately we didn’t get in front of the rule changes.
Here are a couple of action items that I’m aware of.  If anyone knows of any others, please let us know.

Action 1.       There is a petition sponsored by the AAC Institute that is trying to gather signatures to object to the rule change.  It explains things well.  I hope that you will consider adding your names and spreading the word.  https://www.change.org/petitions/congress-white-house-centers-for-medicare-and-medicaid-services-request-that-speech-generating-devices-sgds-are-exempt-from-all-rental-requirements-and-remove-sgds-from-the-capped-rental-rule-that-takes-effect-april-1-2014?recruiter=86717921&utm_campaign=mailto_link&utm_medium=email&utm_source=share_petition

Action 2.       There is some proposed legislation that could move Speech Generating Devices as well as Power Wheel Chairs out from Medicare’s "durable medical equipment" rules (thus escaping the April 4 rule change).  This complex medical equipment that is highly technical and personalized just doesn’t fit rules written for bedpans and commodes.  The MS Society has excellent information on this and they have an action page to submit requests to your legislators.  I their letter can be changed easily to make it about ALS (with thanks to the MS Society for being on top of the issue).  I submitted one to my Representative and Senators.  Here is the link http://www.nationalmssociety.org/Get-Involved/Advocate-for-Change/Current-Advocacy-Issues/Complex-Rehab-Technology

Some really good ALS volunteer-advocates have been trying to sort through what seems to us to be an urgent issue.  Thanks if you would review those two action items above and chime in by submitting support and asking your friends and family to do likewise.

And if you know more or different information about the issue, we would appreciate the insights.

ALS Hope Foundation has been supportive of the concerns.  Team Gleason added support to the legislation item last evening. We’ve not heard a peep from any other ALS organizations. If any had actually submitted any comments to CMS or legislators on this issue, it would be helpful if they would simply post them.

Some Cain-raising by us all is long overdue.  Thanks.

And Perhaps We Who Can Speak Were The Biggest Fools Of All

I can speak and type and do all kinds of things that ALS steals.

Yesterday as I googled for items related to the April 1 Medicare changes in the augmentative communication rules, I wondered where I was a year ago.  Indeed, I was asleep at the switch.

There was a comments period that I and thousands of us interested in the rights of those with ALS missed --
http://onceiknewbetter.blogspot.com/2013/08/proposed-changes-to-medicare-medicaid.html

There was proposed legislation that I and thousands of us interested in the rights of those with ALS missed --
http://onceiknewbetter.blogspot.com/2013/08/proposed-changes-to-medicare-medicaid.html

I and lots of us healthy people who can speak and type and do all kinds of things were cluelessly silent while the rights of people with ALS to communicate were being eroded by new rules.

That was so wrong.

April Fools!

The Medicare medical equipment rules are changing effective April 1.

Here goes...

Augmentative communication devices will be rented for 13 months rather than being purchased.  Not a bad idea, it seems.  Technology improves so quickly these days that 13 months can make a device obsolete.

Whoops... As my grandmother would say, the road to hell is paved with good intentions.

If I understand the new rules correctly, in 13 months if that device has turned into a technical boat anchor, it has become the boat anchor communication tool of the person with ALS.

Oh, and the rules limit devices to things that are strictly for augmentative communications.  In someone's infinite wisdom (that drips with sarcasm in case you're missing it) it excludes devices that can do other things like connect to the internet or run an app that provides the ability to order supplies or read a book or find a clinical trial or question a provider's Medicare charge.

Why would Medicare want to stop people with ALS from talking to people who aren't standing in the room.  The internet really works for those things, folks!

Who hasn't been amazed with the things that a tablet or lightweight new computer can do at a fraction of the cost of some clunky medical equipment devices?

Who wasn't thrilled with Steve Gleason hosted a Super Bowl ad for Microsoft using readily available technology that cost a small percentage of the cost of one of those boat anchor devices?

And  would a person with ALS be eligible for Steve's communication hardware and software under Medicare rules?  No!  Would a person with ALS get stuck with something far more expensive than Steve's $4000 Microsoft Surface-based setup and be wed to far inferior technology? Yes.

All I can find online that addresses these changes are organizations telling people to hurry up and order their devices before April 1.  Where is the outrage and aggressive advocacy to keep this from making taxpayers the fools starting April 1, 2014?


p.s. There are reports that Medicare is applying the new rules already.  So for some reason, they're anxious to spend more for less.  Taxpayers lose. People with ALS lose. Who wins? The boat anchor industry?  We don't measure value by the pound when it comes to smart devices!

Is This Not A Draconian Charade?

During a recent webinar on clinical trial enrollment, the daughter of a man with ALS explained how some stem-cell trials they considered were actually doing a placebo surgery.  All patients accepted in the trial will undergo major surgery to access their spines and brains.  Some will get stem cells. Some will get fake placebo stuff.  Let's sew them up and see how they do, eh, doc?

I was amazed that a surgeon who took the oath about "first do no harm" would even consider this.

I was amazed that volunteers would be subjected to such a cruel risk, especially in a clinical trial system that is so risk-averse about so much.

Let the conversations begin.  Is this the best we can do to evaluate safety and efficacy?

http://www.clinicaltrials.gov/ct2/show/NCT02017912?term=brainstorm&rank=3

People with ALS deserve better than risky fake surgeries and scars that are painful in many ways.

What Are The Tempo and Pace and Tone?

Following is from an interview with Adriana Karaboutis, the CIO of Dell Computers, in the March 9 Wall Street Journal:

 

WSJ: Before joining Dell, you managed IT at General Motors and Ford Motor Co. Is being an IT leader in a tech company different from being one in the automotive industry?

MS. KARABOUTIS: In the tech industry, you have three to six months to build products. You have a 24- to 30-month product life cycle in the automotive industry. That sets a certain tempo and pace and tone within the company.

 

 

What are the tempo and pace and tone of those dealing with the fight against ALS?

 

Our organizations are good at annual things, be they meetings or reports or fundraisers.

 

Sure, there are other shorter periodic reports and supports provided to those dealing with ALS, but for someone in the midst of ALS, life is on a whole different wavelength.

 

And if those working with an annual tempo and pace miss a mark, are expectations for results just pushed out another year?  Is there an undertone that there will always be new cases of ALS that will benefit, whenever the results may come.

 

It's time to make the industry of ALS one that works at a different tempo and pace and tone. 

Don't Let The Matchmakers Lull You To Sleep

It doesn't pay for people with ALS to wait patiently for a clinical trial to find you as a perfect match.

The proliferation of clinical trial matching services, whether via www.patientslikeme.com or https://www.inspire.com/groups/als-advocacy/ or http://www.cdc.gov/als offer promise to notify patients of clinical trial opportunities.

Do those give people with ALS a "don't call us, we'll call you" impression about clinical research?

Do people with ALS miss their short trial eligibility window waiting for the phone to ring?

Those matching services simply don't cover the gamut of enrolling clinical trials.  And they know nothing of patient preferences of location or the type of trial that would work for the individual. They are designed around selected clinical trial sponsor enrollment needs rather than patient needs.

They might find you as a perfect match in a timely manner.  They very well might not. 

www.clinicaltrials.gov shows 71 open ALS trials as of this morning. 

http://wwwn.cdc.gov/als/ALSResearchNotificationClinicalTrialsStudies.aspx has added a nice recap of its research matching notification.  You can see that it's a list of far fewer than 71.

Relatives often want to help when someone is diagnosed with ALS.  The search for a clinical trial can be a great project for them.  They know that you could stay with Aunt Mary in Phoenix or that you would never want to work with that doctor in Buffalo. They can work with you to sift through the variables.  They can help pose the questions that you must ask to figure out if a trial's science is new or old, more promising or less promising.

Some good tools for active ALS clinical trial searches are
www.clinicaltrials.gov (It's not pretty, but it's the most complete.)
http://www.alsconsortium.org/browse.php (They have a live person who can help.)
http://www.als.net/ALS-Research/ALS-Clinical-Trials/ (Very readable to compare trials.)

Finding a clinical trial is a job, but nothing is ever easy with ALS.  The only treatments the least bit promising for people with ALS are these experimental trials.  To miss those opportunities by being passive is tragic for both the patients and the science.

Until the matchmakers become more complete and smarter at being focused on a patient's needs and preferences, you're on your own to find the right match for you.

You snooze, you lose.

People Are Dying In A Slow-Motion World

A study was recently published about the importance of nutrition to people with ALS.  It was based on a five-month study.  A person with ALS looked up the clinicaltrials.gov announcement of this study.  It started five years ago!  What took so long?

ALS organizations have started touting the importance of IPS technology in drug development.  This technology was named Time Magazine's top technology discovery in 2008.  What took so long?

People with ALS have been discussing the recent Orphan Drug indication for a bio-drug candidate for ALS -- GM-604.  It has been around for over 20 years.  What took so long?

Can someone tell us exactly what was going on (or not) with each of these projects during all those years?

This is nuts!

People Dealing With ALS Simply Don't Have Time For This

How does a patient or caregiver find an ALS specialist or clinic?

Let's see...

http://www.alsa.org/als-care/newly-diagnosed.html 
http://mda.org/
http://wwwn.cdc.gov/als/
http://www.alsconsortium.org/contact_a_disease_specialist.php
http://www.alsworldwide.org/search.php

People with ALS simply don't have time to search five different times to see what pops up (and then try to sort out the differences).

These organizations often speak proudly of collaboration.  Here's an easy way to collaborate.  Let's have one excellent search tool that you all share.  Let's have the same accurate, complete information pop up regardless of where a person with ALS or a caregiver goes online.

People dealing with ALS simply don't have the time to deal with the hodgepodge of search information they get today.

And our ALS organizations don't have the money to waste on the redundant, expensive, and mediocre search tools that they provide today.

We're looking at a win-win solution here!

Nobody Blindly Picks A Hotel Or Restaurant In 2014

Who doesn't check out Tripadvisor before booking a hotel room in a strange city?

Who doesn't look at Yelp reviews before trying a new restaurant for a nice dinner?

Yet people with ALS who are choosing clinics and organizations and equipment dealers and physicians and clinical trials are expected to do so based on zip codes and blind faith.  A poor choice has much larger implications than a noisy hotel room or a rude waiter.

Thousands of people use ALS resources every month yet we've not captured their experiences, thoughts, and impressions to help the next person.  

ALS continues to be the disease of reinventing wheels.  

Who Picks The Number? And Why?

From a recent ALS Association announcement --

http://capwiz.com/alsa/issues/alert/?alertid=63056586

We are excited to let you know that on January 16, Congress passed legislation that included ...  an additional $6.5 million for the National ALS Registry. The funding for the Registry is an 11% increase over last year! The legislation now heads to President Obama who is expected to sign it into law.

... The fact that Congress increased funding for the Registry in a year when cuts were the norm is a testament to the effectiveness of your advocacy. 

Every year we advocates are given a dollar number (from ALSA) needed for the CDC ATSDR national ALS Registry to continue.  We advocate to our legislators.  The number gets a very predictable haircut, and the CDC ATSDR has a budget for a well-funded project.  Every year.

Who comes up with the number?  What are the components.  Why did we ask for $10 million and not $15 or $20 or $1 or $5 million. Nobody talks to us advocates about the number.  Nobody discusses it at the invitation-only annual meeting per the recently published meeting minutes.

It just is.

Who picks the number?  Why that particular number?

Very simple questions.  The answers will make effective advocates even better.

It's Zebra Month

Physicians are trained that when you hear hoofbeats, they are usually from horses and not from zebras. You don't go looking for zebras.  Most things are horses.

• Picture the older patient with the hoofbeats of slurred speech. Stroke?
• Picture the younger patient with the same hoofbeats of slurred speech. Alcoholism again?
• Picture the homemaker having trouble opening jars. Arthritis?
• Picture the executive whose left arm feels funny and whose golf shot has gone all to pot. Pinched nerve?
• Picture the young athlete who can't hit the baseball. Time for eyeglasses?

People with ALS have incredible stories to tell of long and expensive paths they had to take to get a correct diagnosis. It often takes years for physicians to look past all of those red-herring horses and see the zebra ALS. We don't know how many people die every day from ALS without ever having been diagnosed correctly.

Doctors are trained not to jump straight to that "rare" diagnosis. Even if they suspect ALS, they don't want to make the diagnosis. There is nothing in the doctor's bag that will treat ALS, and there is no more difficult conversation on earth than to share that with a dying patient.

There are hundreds of such zebra diseases today.  Every one takes a dreadful toll on individual patients and their families.  Zebras are out of the mainstream for healthcare delivery and medical research.  That's a costly mistake in many ways.

It's no secret that I'm not fond of the "rare" word to describe diseases.  It gives some the impression that these diseases can't strike them.  That's dead wrong.  "Rare" does not mean unlikely.  A zebra can strike any family at any time, and it's a lot more likely that you think.

It's Rare Disease Month.  It's our chance to remind people that there are herds of destructive zebras whose hoofbeats must not be ignored any longer.

Information Is A Terrible Thing To Waste

Almost two decades ago Mom asked me to pick up some liquid Centrum at Walgreen's.  She read that vitamin E might be helpful for those with ALS.  Later that same day I stumbled across a passage in Lou Gehrig's biography about Eleanor Gehrig picking special greens in Central Park for Lou.  They were high in vitamin E and there was a theory that might help ALS.  Over 50 years later we were grasping at the same straws.  That's nuts.

On an ALS message board this morning I'm reading about people with ALS trying creatine.  The creatine, creatinine theories have been around for decades, too.  Thousands have tried it, yet families dealing with ALS today are having to reinvent wheels because we have not retained good information for them.

If only Eleanor Gehrig and my mother and everybody who has tried vitamin E or creatine would have left some bread crumbs for others to see what their experiments did (or didn't do) for them!

Everybody with ALS tries things.  Some things are pretty innocuous and some aren't. Some things they tell the doctor and some things they don't.  The information on all of those things is a terrible thing to waste.

Today many people with ALS deal with specialized clinics and ALS not-for-profits for advice and support.  Many discourage patients from sharing data. Why?

I'll never forget one reason that I heard from an ALS Association patient services staff member -- "Our neurologist doesn't like patients posting their data at patientslikeme.com because it makes them lose hope."  Trust me, when you're dealing with ALS, the help that a healthcare team delivers is a lot more valuable than their hope.

People with ALS are so vulnerable to people peddling hope without data.  Let the data speak.

One ALS not-for-profit is managing an access program for an experimental drug.  Think of how valuable it would be for new patients considering the investment if past participant data had been shared.  Data trump rumors and anecdotal reports.

Websites pop up with protocols and exclamations of people with ALS improving.  People who try things that fail seldom put up a website to announce that.  Why aren't data being shared that reveal the good and the bad and everything in between?

I beg healthcare professionals and not-for-profit staffs to encourage (or at least not discourage) people with ALS and their caregivers to let their data speak.  You have influence.

People with ALS and caregivers, please leave some bread crumbs for the next person who travels your difficult path.  Please encourage your peers to share. Post your data with your progression and the things you are trying.  Don't just post the anecdotal good.  Post it all.  You own your data. Let your data speak.

Your histories and information are a terrible thing to waste.

www.patientslikeme.com provides a nice framework for people with ALS.  There are others.  We need to stop the waste!

Some Of You Missed The Best Super Bowl Party Ever

The crescendo started on Friday, then through Saturday, and it hit the heights on Sunday.  All day on Sunday single voices passionate about ALS and the #empowering Super Bowl ad told their social media friends who told their kids who told their friends who told their neighbors who told their relatives who told their co-workers...  And on it went.

And the #empowering Microsoft team listened, and they talked to us!

This was ALS awareness to the hilt.

Live tweeting has never been so much fun and so important.  As we look back at the reach of a bunch of online individuals and a major corporation working together to spread the message of #empowering people with ALS, it was a pretty amazing day.

Thanks, all.  Thanks, Microsoft.  Thanks, Team Gleason.

And if you missed the party, well... you just had to be there.

#Empowering People With ALS

Mom died from ALS in 1997.

When we were losing her, she still had a strong grip, but her dexterity to work buttons or a light switch was completely gone.

Enter The Clapper.

I'll never forget watching her the first time she clapped on and the lights came on.  Clap on, clap off.  It was a huge victory.

Today we'll see how far technology has come for people with ALS when Microsoft shows Steve Gleason using Microsoft Surface during the Super Bowl.  This is another huge victory.

People with ALS deserve these victories.  They deserve a treatment, too, but in the meantime, thanks to all who are #empowering them!

Might Microsoft Be About To Deliver The Best Super Bowl Commercial Ever?

And as we watch the big game, we'll take our breaks during the GoDaddy commercials so that we'll be near the television in case the world will get a glimpse of something meaningful like Steve and Microsoft Surface.   This would be the best Super Bowl ad ever.  Nicely done, Microsoft.