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ALS Registry

February 2013

In this issue . . .  

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

Dr. Kasarskis

Survival and ALS

Q: I’ve read that many people with ALS are now living longer. Is that true?

A: Yes, I am very pleased to say that people with ALS are, on average, experiencing a less rapid decline in their muscle function and living longer than we previously thought possible.

But science is still asking:  why do some people survive longer than others?  If you can figure out an answer to this question, then you might be able to develop a drug that would have the same protective effect for all ALS patients.

To this point just last year, two teams of researchers discovered some clues about genetics that appear to influence survival time in people with ALS.  One study published in the journal Nature Medicine showed how a low level of the receptor, called EphA4, is associated with people who live longer with ALS than others.  Another recently-published study, this time in the journal Nature, identified a new ALS gene (profilin-1) that appears to work “collaboratively” with EphA4. 

These two studies suggest there may be a molecular pathway in neurons (nerve cells) that helps explain not only which people are susceptible to ALS, but also how rapidly their conditions might evolve.  My colleague, Dr. Robert Brown, Chair of neurology at the University of Massachusetts Medical School, was a study co-author.  He says these findings are particularly exciting because they suggest that suppression of EphA4 may be a new way to treat ALS. 

But while exciting studies like these continue, other research has shown that supportive care – as provided by a multi-disciplinary team at an ALS Clinic -- measurably extends function and life for people with ALS.  In fact, the American Academy of Neurology ALS Practice Parameters has found that multidisciplinary clinics optimize healthcare delivery and quality of life, and prolong survival.  Research shows that the clinics provide an extra 1 ½ years of additional survival.
Enthusiasm for these clinics is appropriate; they really are that good.

So how do these clinics do this? In the specialized multidisciplinary ALS clinics, people with ALS get comprehensive care from a coordinated team that includes the ALS neurologist, a physical therapist, an occupational therapist, a speech pathologist, a dietician, a social worker, a respiratory therapist and a nurse case manager.  By seeing all these disciplines during a single visit, people with ALS and their families get their concerns identified early and thoroughly addressed by the team.

This is about much more than simple convenience, although that is a real benefit to the patient and family. The team works collaboratively, pooling the individual expertise, to solve problems.  At the risk of overstating the case, there is no problem the team at an ALS Clinic hasn’t seen. And the team members believe all problems have solutions. The multi-disciplinary team approach also helps people with ALS and their families know what to next expect – what is around the corner in six months or so -- so they can be fully educated and prepared.  It is my belief that the pooled expertise in the clinic can identify the next potential problem, suggest a solution, and prevent catastrophic problems from developing. 

For information about how to find an ALS Clinic or ALS Certified Center near you, visit

In follow-up to last month’s Q & A:

In December, I answered a question about promising new drugs in clinical trials. One of the medications I discussed was Dexpramipexole, by Biogen Idec. It looked very promising and I mentioned that a Phase 3 trial was expected to be completed very soon. I wanted you to know that, unfortunately, the trial was not successful.  There was great hope that the drug would be effective in slowing ALS based on the preliminary studies.  But in the end it did not turn out to be the case.  This serves to remind us all that a clinical drug trial is, at the end of the day, an experiment.  Some drugs succeed and others will fail.  But the research effort must continue!

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.


After You've Been Hospitalized

Being discharged from the hospital is a challenging time for anyone. But for people with ALS, it can pose additional challenges.

Unfortunately, many people have to go right back to the hospital not long after leaving. Two studies published in the Journal of the American Medical Association last month showed that as many as one in five people who have been hospitalized may end up back in the hospital.

One of the best ways to avoid having to be re-admitted to the hospital is to adequately prepare for coming home. It’s important to be sure you fully understand how care and treatment needs will change -- temporarily or permanently. It’s also critical that caregivers are taught how to do whatever may need to be done once at home, from changing surgical dressings to checking blood pressure or altering medication regimens.

To help prevent problems associated with being discharged from the hospital, the Family Caregiver Alliance has information that may be helpful to people with ALS and their caregivers. It is available at:


Supporting Teenagers in Families Coping with ALS

Even when everything is on an even keel, the teenage years can be challenging times.  Add to that having a parent or other family member with ALS, and life can be absolutely overwhelming.

The first thing parents and family members should do is to help their teenagers become knowledgeable about the disease. The more they know, the more they can truly understand. Experts say most teenagers benefit from straight talk – and they don’t want to be treated like children.

Teens will typically want to get involved and help, but their comfort level may depend on their relationship with the parent, how demanding their school commitments are, and their social needs. Since teenagers are in a phase of their lives when they are naturally separating from their parents, finding the right balance between the time spent with a sick parent and time with other aspects of their lives can seem challenging.

Teenagers get satisfaction from being trusted enough to help out when the family is in upheaval. But it is important to ensure the adolescent is still able to have time with their friends, participate in school activities and have parts of their lives separate from the family. It’s good to check in every now and then with teenagers to see if the balance between home and the rest of their lives is being maintained.

Parents, teens and family members who are experiencing stress and sadness from the challenges posed by ALS may find they have a shorter fuse when dealing with the normal mood swings and issues of daily life. It’s harder to be patient when you’re angry, frustrated, tired and depressed. Sometimes families benefit from outside counseling or from talking with a trusted pastor, priest or rabbi.

There are also other resources that can help:

  • Cope, Care and Deal:
    • Provides tips for teens coping with stress and problems, from the normal issues of adolescence to depression and other mental health issues
    • Gives guidance on how to identify personal strengths and coping strategies
  • The American Academy of Child and Adolescent Psychiatry:
    • Geared more to parents, the website offers a good overview of stress-reducing technology in daily life, with additional information on depression, anxiety and when to seek help
  • American Hospice Foundation:
    • Offers “Facts for Families”: information for parents, on a wide range of topics related to children and teens
    • Information on the uniqueness of teen grief, how to start a support group, activities that work well with teens, and when to refer to a professional


How to Help Avoid Medication Errors

By Barbara Bronson Gray, RN, MN

To err is human. But a medication mistake -- getting the wrong prescription, a different dose, the wrong form of the drug – can potentially cause big problems.  Here are a few things you can do to prevent problems associated with medication errors:

  • Know and fully understand what your physician is prescribing for you and why. Before you leave the office, be sure your know the name of the drug, its purpose, the intended dose, how often you should  take it, when you should take it and what you should do if you skip a dose.
  • Ask whether there are any potential bad or unexpected reactions you should be aware of. Learn, too, if there are any normal reactions for which you should be prepared.
  • If you can, make a copy of the prescription before you give it to the pharmacy. Keep the copy in your healthcare file for reference.
  • When you or a family member picks up the medication, make sure the drug is exactly what was ordered. Even if you're in a rush, take the time to check the name and address, the name of the medication, the dose, how often it says the drug should be taken, and whether the medication is a pill, syrup, ointment or an injection. Review the details carefully. It's relatively easy for a 5.0 mg dose to be misread as 50 mg or 0.5 mg. Between bad handwriting and typos, it's not hard to imagine how mistakes can be made.
  • If the written instructions about the medication differ in any way from what your healthcare provider told you, talk directly with the pharmacist and find out why.
  • If, after taking the medication, you have any unusual reaction at all, talk with your healthcare provider or the pharmacist right away.

Think of the hundreds of medications that are processed in your local pharmacy every day. When it comes to taking medications, it’s smart to be on the alert for small mistakes that could create health issues.


Participate in Educational Web Calls

Brain-Computer Interfaces:
What the technology may mean for people with ALS
Tuesday, February 26, 2013
11 a.m. Pacific Standard Time, 1 p.m. Central Time, 2 p.m. Eastern Time

Speaker: Alisa Brownlee, ATP The ALS Association, Greater Philadelphia Chapter

Call-in toll-free number (US/Canada): 877.668.4490
Session number: 676 346 813
Session password: ATCall2

To link to the webinar:


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