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ALS Registry

October 2012

Inside this Month's Exchange eNewsletter . . .

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

How to Avoid the Risks of Dehydration

Dr Kasarskis

Dr. Kasarskis

Q: My father died of ALS 28 years ago, and subsequently, my first cousin also died of the disease. Both were diagnosed in their late 40’s, and I’m 47 but not having symptoms. Genetic testing was not done prior to their deaths. Is there any way to know if we’re dealing with a case of familial ALS?
                                       (name withheld by request)

A: The short answer to your question is yes, there are ways to help you know what you’re dealing with. But there’s a lot you should know before deciding if genetic testing is right for you and for your family.

First, a little background. ALS is hereditary in just a small percentage of families. Only about 10% of people with ALS have a close family member with the disease. In such cases, it’s called “familial ALS” or “FALS” for short. 

To date, research from around the world has identified at least 8 different genes associated with FALS and the list is expanding.  The first gene identified was SOD1, but it is now believed that mutations in the C9orf72 gene might be the most common.  Others include FUS and TARDP.

You can get many more details about genetics and heredity in ALS by going to  Don't let some of the technical and scientific detail intimidate you.  Commercial testing is available for most of these genes (but it’s very expensive).  You should know that any single family with FALS has only one mutation in one of the genes, so if you are like most people, you probably will need some professional advice (more about this later).

In a situation such as yours, the best first step is to talk with a neurologist or genetic counselor about your family history. He or she will explore the details of your family history with you and provide you a better understanding of whether you’re actually dealing with familial ALS.

But let’s just say the genetic counselor or neurologist suggests you get genetic testing. There’s still much more to consider in order to make a truly informed decision.

You should first take a step back and ask yourself why you’re interested in getting a genetic test in the first place.  Perhaps you’re wondering if you should have children? Or, if your children should have children? Or maybe you find you’re worrying about the disease and whether or not you are going to get it, and that’s causing you constant anxiety?  Or perhaps others in the family are wondering?  A genetic counselor will help you evaluate your concerns and decided whether genetic testing will likely be helpful to you. 

Sending blood off to test for these genes is easy; answering these questions may be very hard. 

The fact that you asked the question in the first place indicates to me that there are some issues that need further exploration with your neurologist and/or genetic counselor.  In the end, you may chose not to have any genetic testing.

Even if you get a genetic test and find out you have one of the ALS genes, you may still end up with more questions than answers because:

  • Having one of the genes for FALS does not necessarily mean that you’ll develop ALS.
  • If you have a FALS gene, there’s no way to know at what age you might develop symptoms.
  • There are currently no preventative treatments.

From my point of view, unless someone has several generations involved -- a grandparent, a parent, an uncle or an aunt, a brother or a sister -- genetic testing may not offer the information you’re looking for.  Good luck on your quest.

For more detailed information on the genetics of FALS, see the Q & A on The ALS Association website.

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. 


What You Should Know about Taking Medications in the Wee Hours


Any time you get up in the middle of the night to take a medication, you’re at risk for making a mistake.

It’s dark. You’re tired and probably not very alert. You probably avoid turning on a light, perhaps to keep from waking up “too much,” or out of consideration for the rest of the family. You might even be a little unsure of the time. Is it 12 midnight or 1:20 in the morning on your digital clock?

It's also hard to read the tiny print on prescription labels in low light and without contacts or glasses. And, in the morning, you may forget that you took any medication at all during the night.

If you're taking a liquid, such as cough medicine, you might be tempted to drink out of the cap or the bottle if you don't have a spoon nearby. All those factors raise your risk of taking the wrong medication.

Here are some tips to make sure you’re taking medications safely at night:

  • Make some rules for yourself and your family when it comes to taking medications at night: Lights on. Read the label carefully. Check the time. Leave the pill container out so you remember in the morning that you took something.
  • If you regularly need a medication in the middle of the night, leave it out on the counter to reduce the chance that you'll grab something else instead.
  • If you travel, make sure you carefully label each medication you bring so you don't accidentally take the wrong drug.
  • If you take sleeping pills, know which are slow-acting and which are long-acting and label them clearly. Be certain you know the time cut-off after which you should be happy just counting sheep.
  • Keep a liquid measurement tool or spoon with any liquid drugs, like cough syrup, so you can easily get the proper dosage and won't be tempted to estimate or drink out of the cap.  If you're traveling, tape a plastic spoon to the medication container.

Taking any drugs at night -- prescription or over-the-counter -- can be fraught with risk. Be smart and you’ll be safer.

By Barbara Bronson Gray, RN, MN


Getting Your Loved One or Caregiver Access to Your Medical Record

If you think you’ll ever need your spouse, partner or other caregiver to be able to access your medical record, there’s no time like the present to give permission for that.


There are a wide range of reasons why it might be smart to give someone you trust the authority to get information from your healthcare providers about your health status.

Perhaps you’re unavailable when the doctor’s office calls with a lab or biopsy result you’ve been waiting for.

Maybe one physician wants medical records from another doctor, and the quickest way to expedite that is for someone to hand-carry the documents from one office to another.

Or, if you should be hospitalized, you may want to be sure that someone you trust is authorized to get detailed briefings on your situation and progress.

Under the federal government’s HIPAA (pronounced “hip-a”) regulations, healthcare providers and institutions must follow strict rules to protect privacy. Sometimes the privacy rules make it more difficult for you to offer another person access to your information unless you’ve explicitly provided for that.

Be sure you submit a written authorization to all of your healthcare providers, healthcare facilities and your health plan stipulating that a named caregiver or other individuals have access to your healthcare information, spoken and written. Authorization needs to be comprehensive, giving the doctor, nurse and hospital permission to release all information about treatment and care to you and to whomever you designate. Such provision is required for both written and electronic records.  

Regulations vary state by state. For more information on particular rules governing medical record access in your state, visit the Center on Medical Records Rights and Privacy at Georgetown University:

By Barbara Bronson Gray, RN, MN


In the News: Ex-NFL Players at Higher Risk for ALS

A new study of more than 3,400 football pros who played for at least five years, from 1959 to 1988, suggests that ex-NFL players are at higher risk for ALS and Alzheimer’s.


The study, published in Neurology, found that for those in “speed” positions (such as quarterback, running back and linebacker) the death rates for ALS and Alzheimer’s diseases combined were about four times higher than for other men. Speed positions are more vulnerable to concussions because players in those roles are more likely to be hit in the head.

The study does not prove that playing pro football is the cause of the increased incidence of disease among these players, although it does support recent research that has shown an increase of diseases associated with damaged brain cells among football players.

The study looked at men with an average age of 57 and used diagnoses from death certificates for the 334 players who died through 2007. Of the players who died of neurological causes, 62% were speed players.

Participate in these Educational Web Calls

Low Tech and Easy Communication Tools for People with ALS

Monday, October 22, 2012, 11 a.m. PDT (2 p.m. EDT)

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

Call-in toll-free number (US/Canada):1-877-668-4490
Session number: 820 891 240
Session password: Attopiccall1

Enter your name and email address.

Enter the session password: Attopiccall1

Click “Join Now.”

Follow the instructions that appear on your screen


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