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ALS Registry

July 2012

 Ask the Doc: Q & A with Edward Kasarskis, MD, PhD

Dr. Kasarskis

Q: What would you say are the biggest payoffs in ALS treatment? What are we reasonably able to expect might be the best and most likely outcome of continued research?

A: That’s a very interesting question. Most people simply ask, “When will we have a cure for ALS?”  What people probably mean when they pose that question is “When will I be restored back to my previous level of health?”  But many ALS patients tell me that they would be very pleased if their disease progression would be halted where it is.

At least in the near future, the "perfect" ALS drug would stop the ongoing degeneration and death of motor neurons in the spinal cord and brain, and therefore prevent any further progression of weakness.

Rilutek, of course, attempts to do that, but doesn’t go far enough.  The gold medal for ALS drug development – to borrow a term from the Olympics starting later this month in London– would go to a drug that would stop degeneration in its tracks and prevent the disease from progressing any further.  This would be a high value outcome, for sure.

To understand how this could come about, we need to dig a little deeper into the disease process.  What’s interesting is that, early on, apparently healthy motor neurons try to fill in for the cells lost in the ALS process. We use this fact when trying to diagnose ALS in a patient. By this I mean that the neurologist doing the EMG test looks for larger "motor units" (sorry for the technical term but this refers to an individual spinal motor neuron and the number of muscle fibers that the single motor neuron connects to).  This indicates that surviving, healthy motor neurons are essentially trying to “cover up” for the lost ones that are dead to ALS.

This is the process of "denervation" of muscle (loss of nerve connection to muscle) and "re-innervation" (the reconnection of muscle fibers to one of the remaining motor neurons).  It’s a sign that all ALS motor neurons don't die off at once.  This important fact offers hope that a drug could be developed to arrest the disease process in the spinal cord and halt progression of weakness.  This also suggests that after such a drug stops the degeneration and death of motor neurons, it would also allow the reconnection of nerve to muscle and stabilization of muscle power.

The patient would recognize that the disease progression stopped.  Imagine such a drug could be developed and available. The ALS patient would still have to live with some amount of permanent muscle weakness but the weakness would not progress further.  Patients tell me that they would be able to handle this situation.

How could such an amazing drug be developed?  The answer will probably involve finding a biomarker or biological signal that can identify the presence of ALS and measure its progression.  Then you could take the drug and determine if the drug actually slows down, or stops the illness. Of course, the ultimate Holy Grail for ALS would be to be able to either restore/replace lost motor neurons using stem cells, or to prevent the disease altogether, perhaps through a vaccine. That accomplishment, at this point in time, is still quite far off into the future.  The answer will only come with more research.

Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multidisciplinary Clinic in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY.

If you would like to submit questions for a future Q & A, please send your questions to  Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.

 Advice from the Trenches

Sandra Stuban with her husband, Steve

Sandra Lesher Stuban has been writing this column monthly for several years. We are very sad to report that Sandra passed away June 14, 2012. She was at home, with her husband Steve by her side.

We are enormously grateful to her for the insight she so ably and gracefully shared with the ALS community, and for the substantial and inspirational contribution she has made to helping others with ALS.

Sandra completed her education as a nurse at the Hospital of the University of Pennsylvania in 1977. She subsequently earned a B.S. in Nursing at the University of Pennsylvania, a Master of Education degree from Boston University, and Master of Nursing and Master of Health Services Administration degrees from the University of Kansas.

Sandra received a direct commission as a US Army Nurse Corps Officer in 1981. Her military assignments included tours of duty at the Tripler Medical Center in Hawaii, Ft. Hood in Texas, 34th General Hospital in Augsburg, Germany, and as a senior Nurse Corps advisor for the Army’s ROTC programs. Her final military assignment was as the Chief of Patient Education at Tripler Medical Center. In the course of her military career Sandy received numerous military awards and decorations, earned the Expert Field Medical Badge, graduated from the US Army Command and General Staff Officer Course (with honors) and was selected for early promotion to Lieutenant Colonel. It was in 1995 that she was diagnosed with ALS and subsequently medically retired from the Army in 1997.

In the years that followed, Sandra focused her attention on advancing awareness of and research into treatments for ALS. This article was written just a few days before she died.

Q:Before ALS, I loved going to sports events. I really miss them. With all my equipment and the huge crowds, I don’t know if I dare try. Do you have any experience with tackling such a challenge?

A: I recently attended a Nationals major league baseball game in Washington DC. It all started when my husband Steve said, “Let’s go!” and my caregiver enthusiastically agreed. With the Nats in first place in the National League East and Stephen Strasburg pitching, I really wanted to attend the game. But I hadn’t been to a major league baseball game since I was diagnosed with ALS. There were a lot of unknowns and uncertainties going in a wheelchair with a ventilator.

Jon, my caregiver, took charge of getting the tickets. The online ticket purchasing website had no mention of wheelchair accessible seating, so he called ticket customer service, explained our needs and purchased our tickets and parking pass through that person. The day before the game, Jon and I reviewed what supplies we would need to take with us. They included my standard “go bag,” a transparent letter board so I can communicate, a cotton sweater because I am always cold, a fleece blanket for my legs, and a utility extension cord as a backup if the batteries run low on the ventilator and suction machine.

On game day, we easily located the parking garage which had ample handicapped parking spots directly beside the elevators. We took the elevator to the ground level which opened to the outside paved area in front of the ticket entry point. Once inside, we followed the concourse toward our ticketed seats. We took another well-marked elevator up to our level and again moved toward our seating area. Every wheeling surface has been smooth and uninterrupted.

We reached our seats. It was a covered patio-like area with a metal railing on the field side. Padded folding chairs allowed us to arrange the chairs around the wheelchair as we liked. An electrical outlet was present at the far end, which we ultimately didn’t need.

With the 1 p.m. game underway, it was chow time. After the boys had their burgers and chili dogs, Jon discretely slipped my g-tube out between the buttons of my top and gave me a can of Osmolite followed by a chaser of water.

The game was fantastic, the atmosphere electric. The incredibly easy access actually surprised me. Everyone was completely accommodating. The outing was fun with absolutely no glitches. All my apprehensions were entirely unfounded.

Sometimes you have to go ahead with plans without knowing with complete certainty how accommodating the site may be to wheelchair-using individuals. Maybe it’s time to consider a day at the ballparks where Lou Gehrig once played.    


Getting Financial Information Organized

It’s hard to organize critical financial information in a simple-to-use, easy-to-find way.

Here’s a tool you -- and designated family members and advisers -- may find useful. It’s a comprehensive guide (in book and CD format) that will help you compile information in several critical areas: financial and legal; health, practical matters (such as utility providers) and family and friends. “The Essential Organizer: An Ongoing Record of Your Estate and Personal Information,” by William O. Lytle, a former management consultant, may make the process a lot easier for you.

You enter your personal information onto worksheets, either right into the book or using the CD and a computer. The computerized approach makes it easy to change entries, store information securely on your hard drive and send copies to family, friends or advisers. It’s compatible with PC and Mac computers.


Connection for Caregivers

Interested in helping community members connect with fellow caregivers or better organize their support systems? Here are three websites that provide a range of resources:

  • A care coordination system that puts the patient at the center, like a “planet,” and all the caregivers and activities are focused around him or her. A free service, allows you to secure records access, include family members and friends, and track key data for review by healthcare providers. It can be used on mobile devices such as smartphones.
  • Provides private places to organize, store and manage a variety of information related to caregiving. Allows you to keep friends and family informed, keep a journal, document medications and care instructions, keep an emergency profile and upload files. It’s free for the first year.
  • Both a private and an open community, it helps calendar activities, provides message boards, helps store vital information (such as medications, allergies and insurance) and other features. It’s free.


The Value of Having a Health Resume Ready to Share

It isn’t always easy to sum things up quickly. It can be especially difficult when you’re under pressure or feeling stressed.

That’s why it makes sense to get your health history organized before it’s needed, whether for a doctor’s appointment, a consultation, or in case of an emergency. Now you can use a free wallet card or an iPhone app to help you store your key information and have it ready when you need it.

“It makes sense to manage your own information,” says Alexandra Yperifanos, founder of ExpressWell, Inc. She and Andrew Hill started the company – and created the iPhone app and wallet card system – because they wanted to help people organize their information and have it quickly accessible.

Years ago, Alexandra and her father, Nico Yperifanos, created a document to manage his health information. They summarized his critical medical history into one, easy-to-read page, a kind of “health resumé.” They used it frequently, asking doctors to review it at the start of any appointment. His physicians said it was just what they needed: clear, easy-to-read information that helped them quickly understand their patients.

The tool was designed to be especially helpful should you have difficulty communicating your health history, due to ALS or other diseases and conditions that can affect your speech or ability to communicate, Yperifanos says.

“It’s a brief description of who you are,” she says. Information entered and stored includes, for example, blood type, medications you’re taking, allergies, conditions, surgeries and procedures you’ve had, the name and contact information for your physicians and emergency contacts, your height and weight, and the name of a family member or friend who knows you well enough to talk about your health status with a healthcare professional.

You can get the app on iTunes, ($4.99, or $5.99 for a version that allows you to enter profiles for up to 10 people). Just download it on your phone, fill in the information, and then, when needed, simply hand your phone to a health professional. A free wallet card is also available on the website as a back-up tool, or for those without iPhones.

It’s so easy to forget important information. Having a quick summary of your health background and the issues you face can prevent errors and help ensure you get effective and timely diagnosis and treatment.

By Barbara Bronson Gray, RN, MN


How to Plan for a Local Emergency

It goes without saying: you can’t predict floods, hurricanes, tornados or fires.

People with ALS should identify key friends and family they could call, determine how they would get away from their home or neighborhood, and create emergency preparedness kits geared to their individual needs.

Experts suggest these survival tips for natural disasters:

  • Practice getting out of the house quickly at least twice a year.
  • Discuss any special needs with a local emergency medical services provider.
  • Plan where to stay, consider how to get there, and identify who may need to provide assistance.
  • Prepare an emergency preparedness kit to last 24 to 48 hours, including medications and a list of what drugs are typically taken;  contact numbers of friends, family and physicians;  catheter or breathing system supplies and a power source; a first aid kit; and extra contact lenses or glasses.
  • Consider shelter and supplies for any service animals or pets

For more information on emergency preparedness, visit


Participate in these Educational Web Calls

Dr. Chris Shaw

Research Update: C90RF72: Another Vital Piece in the Molecular Jigsaw Puzzle

Hosted and organized by The ALS Association’s Research Department

July 10, 2012 (Tuesday) at 1:00 p.m. PDT (3:00 p.m. CDT, 4 p.m. EDT)

Speaker: Chris Shaw, M.D.

A clinician scientist with a strong background in molecular cell biology, Dr. Shaw  received the 2012 Sheila Essey Award at the 64th Annual Meeting of the American Academy of Neurology  (AAN) in New Orleans on April 24, 2012.  He received the prestigious honor for his research that investigated the genetic basis of ALS.
Call-in-toll-free number (US/Canada): 877-668-4490
Meeting Number: 824 816 850
Meeting Password: Chicago1
For information about future calls, please visit, and click on “Our Research,” and then “Research Webinars.”

July 23, 2012 (Monday) at 11:00 am PDT (2:00 pm EDT)

Decreasing the Work of Breathing in ALS
Speaker: De De Gardner, MSHP, RRT, FAARC, Chair, Department of Respiratory Care,
The University of Texas Health Science Center-San Antonio
Call-in toll-free number (US/Canada): 877-668-4490
Meeting Number: 822 055 63
Meeting Password: ATTopic1


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Lou Gehrig® used with permission of the Rip Van Winkle Foundation /

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