Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Sunday, March 30, 2014

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.)

Thursday, March 27, 2014

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
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.

Wednesday, March 26, 2014

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.
  • 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 --

Monday, March 24, 2014

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.

Saturday, March 22, 2014

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 --

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

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 --

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.

Friday, March 21, 2014

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.

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

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.

Wednesday, March 19, 2014

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 --

There was proposed legislation that I and thousands of us interested in the rights of those with ALS missed --

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.

Tuesday, March 18, 2014

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!

Thursday, March 13, 2014

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?

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

Tuesday, March 11, 2014

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. 

Thursday, March 6, 2014

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 or or 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. shows 71 open ALS trials as of this morning. 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 (It's not pretty, but it's the most complete.) (They have a live person who can help.) (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.

Tuesday, March 4, 2014

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 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!