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ALS Registry

June 2012

 Inside this Month's Exchange eNewsletter . . .

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

Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center 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. 

Dr Kasarskis

Dr. Kasarskis

Q: I’m taking a lot of medications, some for ALS and others for different conditions, and wonder if there could be drug interactions or side effects from them? What can I do to be sure I need everything I’m taking?

A: First, I know this may sound like a very low-tech way to initially approach your problem, but I recommend you bring all your medications, in their containers in a big plastic bag to the ALS clinic or to your neurologist. It’s actually handier than a simple list because the pills can be examined and reviewed in person. By going over the drugs together, we can usually identify any potential interaction problems and may even discover a few medications that are no longer necessary. A typed list is still welcome so you can do both.

You can also discover potential drug interactions using several high-tech tools available through your smart phone, iPad, or computer. For example, can take information about your pills and help you identify them. It can also give you potential drug interactions and side effects so you can be on the lookout. The tool also reminds you of safety monitoring required with certain drugs. (Rilutek©, for example, requires a blood test for liver function every month for the first three months when you begin to take the drug). There are also free tools for pill identification and drug interaction on and AARP.

When reviewing your “sack of pills,” your physician or your pharmacist can check to see if you have too many pills that may negatively affect a particular organ or cause you risk. Perhaps you take two or more drugs that can affect the liver for example, or that could sedate you and decrease your respiratory ability, especially when you’re sleeping.

Sometimes people wonder if a particular symptom is due to any of the drugs they’re taking or is caused by ALS itself. By reviewing your drug list, your physician or pharmacist can help you determine which it might be.

If you take your medications via a PEG tube to your stomach, you can ask your pharmacist if you can safely take all your drugs at once. In other words, might there be any negative interaction if they’re all part of the same tube feeding? You can also ask your pharmacist if any of your medications might be available in a liquid form. That would cut down on the time it takes for you to crush the pills for the tube feeding.

It is likely that someday we’ll have a drug “cocktail” available that will help control ALS with a combination of medications. Certainly, anything that can make managing your drug portfolio easier and more foolproof should be welcomed by all!   

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

Sandra Stuban
with her husband, Steve

Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She’s the author of "The Butcher’s Daughter: The Story of an Army Nurse with ALS," in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer and nursing leader.

Q: I’d like to find a way to bring my friends together regularly without having to have a big event or a party. I was thinking about starting a book club. I remember reading that you have a book club of your own. Could you discuss how to create and manage a book club?

A: I am a huge advocate for monthly book clubs for people with ALS. In fact I think every person with ALS should seriously consider starting one. There are so many benefits. It puts you in charge of something at a time when you may feel you are losing control of your body and your life. It automatically gathers your friends around you every month.

Having a book club focuses your attention on books, reading, new topics and upcoming discussions instead of just the daily challenges of ALS. It also provides a regularly-scheduled opportunity for interesting, stimulating and thought-provoking conversations.

I started my book club a year after I received my tracheotomy and ventilator, when I could no longer speak. This group of friends and neighbors hasn’t missed one month of book discussions in the ten years we have been meeting. Here are five easy steps to get your book club started:

  • Select your group. Email your friends to see if they’d like to be a part of your newly- forming book club. You can start small and grow or begin with a larger number. My group began with five ladies and eventually grew to eight.
  • Determine your meeting time. Just email your core group to determine a day of the week and time that suits everyone’s agenda. It can be hard to accommodate a variety of lifestyles, children’s needs, busy work schedules and preferences. My group chose to meet the last Wednesday of each month.
  • Select your genre.  Ask your group what type of books they’re interested in reading and discussing. You can choose from best sellers, politics, mysteries, science fiction, romance, nonfiction, fiction or thrillers. My group decided they wanted to alternate between historical fiction, biographies and classics.
  • Develop a reading list. There are many different ways book clubs select their books. I create a six-month reading list using suggestions from individuals in the group, newspaper reviews and a website called BookBrowse. It rates books and provides critics’ reviews, among other information, by genre.
  • Enjoy the discussion. Once your book club is established, it pretty much runs on auto-pilot. Since I cannot speak, I use a feature on my EZkeys software that allows me to prepare leading questions that I ask through my voice synthesizer during meetings to guide the discussion. The conversation is always lively, informative and entertaining.

Another option to a full-fledge book club is to choose one special person – a spouse, best friend, close family member – and read the same book. Then discuss it.

Reading and enjoying books is no longer an obstacle for those of us with ALS. Libraries and major book outlets now not only offer hardback books but also audiobooks and ebooks. So take the next step and consider starting your own book club!

 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.



Managing Your Medications

managing pills June 2012.jpgEven in today’s high-tech world it’s difficult to manage a slew of medications. It's easy to forget when to take what drug. The more drugs you take for the more diseases and conditions, the greater the chance of drug interactions creating side effects or diminishing the effectiveness of the medication.

Thankfully, there are a variety of things you can do to simplify your situation and make it easier to manage your medications:

  • Be sure you understand a prescription when a physician writes it for you. Whether it’s a new medication or a revised dose of one you’ve been taking, read it out loud back to the doctor or nurse and make sure you know what is being prescribed. When you receive the medication from the pharmacy, double check to make sure it’s right. 
  • If your medication dosage changes, put a post-it note on the container with the previous dosage to remind yourself not to use that bottle. Of course, you may want to keep the bottle, if it hasn’t expired, since there’s always the chance you’ll be switched back to the previous dose. Just make sure you don’t accidentally revert to the older prescription.
  • Keep an updated list of all your prescription and non-prescription (over-the-counter) medications.  Write down the name of each drug, the dosage, and the purpose. Bring a copy with you to health appointments and to the drug store when you pick up the medications. It’s not a bad idea to keep a copy in your wallet or purse just in case you end up at an urgent care clinic or emergency room, too.
  • It’s smart to use one pharmacy for all your medications. That way your pharmacist has the list all in one place. You should ask your pharmacist to check the list and alert you of possible drug interactions. 
  • Use a pill organizer to help you avoid missing a dose or accidentally taking a pill when you shouldn’t. Try to keep to a routine so you’re less likely to forget.

    • Check out They offer free systems to set refill reminders, maintain medicine schedules for you and for others in the household, print your schedule in English or Spanish, and create a wallet-size schedule to keep with you.
    • Consider getting a medical alarm watch for medication management. For example, the Cadex e-Pill 12 Alarm Medication Reminder Watch offers up to 12 daily alarms that beep and show a visual message at pre-scheduled times. The watch also serves as an electronic medical alert/ID bracelet. It’s available at
    • Surveyor Health provides a personalized drug assessment tool designed to show users not only drug-drug interactions but also the much more common and often dangerous adverse drug side effects.
    • RxVitality offers a “smart” pill bottle that uses sound and lights to help remind you to take your medications.

It’s also important that you understand the role your medications play in your total treatment plan. Knowing how the drug works with other aspects of your care can help ensure you’ll want to stick with the program and not get discouraged when questions or issues arise. Take a look at the resource the Agency for Healthcare Research and Quality offers:

by Barbara Bronson Gray, RN, MN



Travel Tipglobal travel June 2012.jpg

Going abroad? You can join the U.S. Customs and Border Protection’s Global Entry program. Preapproved travelers check in at a special kiosk when they reenter the U.S., allowing them to bypass the long lines. It costs $100 and requires a screening process. There is no minimum number of trips required to qualify for the program. For more information, go to


Participate in these Educational Web Calls

Travel, Safety and ALS

June 18, 2012 (Monday) at 11:00 am PDT (2:00 pm EDT)  

Speaker: Alisa Brownlee, ATP, ALS Association, Greater Philadelphia Chapter
Call-in toll-free number (US/Canada): 877-668-4490
Meeting Number: 826 671 435
Meeting Password: ATTopic1

Research Update

June 19, 2012 (Tuesday) at 1 pm PDT (4 pm EDT)

Hosted and organized by The ALS Association’s Research Department

Speaker: Clive Svendsen, Ph.D., Director, Regenerative Medical Institute,
Cedars-Sinai Medical Center, Los Angeles 
Call-in toll-free number (US/Canada): 1-877-668-4490 
Meeting Number: 828 221 730
Meeting Password: Chicago1

For information about future calls, please visit and click on “Our Research,” and then “Research Webinars.”


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