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ALS Registry

April 2013

In this Issue . . .  

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

Dr. Kasarskis

What Do Faciculations or Muscle Twitching Mean?

Q: Many people who have muscle twitching worry that they have ALS since it’s often associated with the disease. If a person has muscle twitches a lot, or even daily, could it be the beginning of ALS?
                                             Carolyn Rosado, St. Cloud, Minnesota

A: Muscle twitching is very common, especially when people have had too much coffee, too much stress, or not enough sleep.  Does this sound familiar?

Of course, the first thing many people do when they have a symptom is to run to the computer to see what Dr. Google has to say about it.  I just did that and I got 1,390,000 results in 0.25 seconds.  One of the first items that popped up was a Wikipedia definition leading to the term "fasciculations," (which means muscle twitching), suggesting the symptoms could be associated with ALS. And then of course it’s natural to panic.  So if you were not under stress at the start before you went to the Internet, you certainly would be after consulting Dr. Google.

But take a breath.  There are many things that can cause muscle twitching, including fatigue, anxiety, or even a pinched nerve in the spine. Muscle cramps, too, are very common, and can be caused by such things as over-exertion or even dehydration. Just watch any basketball game: it seems there’s always somebody on the floor dealing with a significant leg cramp.

Symptoms such as muscle twitching and muscle cramps don’t tell you much just by themselves; they are very common and non-specific.  To diagnosis ALS, a physician needs to see signs of progressive muscle weakness.

What causes fasciculations? They originate at the very tips of the nerves, called axons, as they come close to being in contact with the muscle. The tips of the axons are thought to be overly sensitive to depolarizing (electrical firing), which is what triggers a muscle to contract.  When a nerve fires, zillions of times a day upon request, an electrical impulse starts in the nerve, moves out toward the muscle, triggers the release of a chemical (acetylcholine) that "swims" across the gap between the nerve axon and the muscle, and binds to a receptor on the muscle causing it to fire. The complicated process itself takes a small fraction of a second.  If any of this happens involuntarily, then the muscle fiber contracts without your permission – and behold, a muscle twitch or fasciculation!

Some people with ALS wonder if the presence of muscle twitching means they have a bad or fast-moving version of the disease. In fact, having fasciculations doesn't correlate with how rapidly the disease progresses.

I would suggest most people with fasciculations or muscle cramps wait a few months – although there’s no hard and fast rule -- before seeking a medical evaluation.  Often the twitching or cramping will just stop on its own. If it doesn’t, it makes sense to get your problem evaluated.

An internist or a neurologist will ask you some questions, learn more about what you’ve been experiencing, and hold your limb in a relaxed position and study the twitching. He or she may then want you to have a muscle test (an EMG) to better understand what could be going on.  Blood tests might be needed as well.

Often, the results will look normal but the doctor may suggest waiting a little longer to see if anything further develops over the next few months.  Even in the 21st century, there is sometimes no instant test or procedure that can give you a clear answer about a problem. With fasciculations, this is certainly the case.

Waiting is a challenge for most people, but the odds are heavily in your favor that you don't have ALS.  As they say, "common things are common," and ALS is not common, especially when compared to excessive caffeine use and stress.

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.

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.   

Financial Fitness: Paying Taxes for Household Workers

By Barbara Bronson Gray, RN, MN

April may be the much-anticipated first full month of spring, but it can also represent one of the most least-loved seasons of all: tax time.

Paying household workers within the limits of the law is one of the challenges people with ALS often face. Financial advisors say it’s common for people to have questions about how to handle the somewhat complicated tax-withholding requirements and related tax issues associated with people who help at home.

Many people pay workers in cash or consider them as “independent contractors,” tax experts say. But that approach can spur an audit or lead to steep penalties.

The IRS requires you to withhold from a worker’s paycheck and pay Social Security and Medicare taxes -- and any applicable state taxes -- if a worker is paid $1,800 or more this year. Employers must file a W-2 and Schedule H each year.

As an employer, your contribution to your household worker’s Medicare and Social Security will add at least 7.65 percent to what it costs you to engage the person’s service. Paying unemployment insurance, worker’s compensation insurance and state tax will increase your cost of employing the individual even more.

You are also required to have an employer identification number and have a responsibility to ensure your household helper can legally work in the U.S.

What if you haven’t been paying these taxes and associated other costs? This year, the IRS will be allowing more people who haven’t been playing by the rules to participate in a program that reduces potential penalties. Last year, the IRS revised its Voluntary Classification Program (VCSP) to make it easier for those who haven’t been paying the worker’s taxes to “come clean.” The program is designed to allow employers to begin paying the taxes now while not being responsible for interest and penalties for previous years, according to tax experts.

One way to get help with all this is to engage a payroll firm that will handle the process of paying, reporting and withholding a household worker’s taxes. For example, HomeWork Solutions will perform a range of services, including generating W-2 forms, preparing payroll tax returns, calculating withholding, making tax payments and filing reports, and even paying the employee, if desired, for between $495 and $750 a year. Other firms that perform these sorts of services include, for example, Intuit Payroll, Sure Payroll, and GTM Payroll Services.

If you have any questions about your situation, experts strongly suggest you talk with a tax professional.  


Spring Fever? Try Wheelchair Gardening and Great Tools

By Barbara Bronson Gray, RN, MN

If you love to garden but have assumed that the physical limitations of ALS have to hold you back, you may want to consider wheelchair gardening.  Imagine being able to pull weeds, spend time outside working in the sunshine, or cutting your favorite flowers for an arrangement you can bring inside. Gardening is wonderful therapy and a natural escape from the daily routine.


The key, say experts, is to create a gardening experience that is accessible for you. Garden tables can allow you to pull a wheelchair right up to the plants and soil. Check that you can get to the table safely and easily, and that it’s narrow enough that you can reach the entire space. Make sure the walkways are navigable by wheelchair: wide enough, and even, with room to turn around or back-up.

Another option might be a vertical wall garden, which contain plants in a vertical panel, often placed against a wall.

Some people enjoy tending potted plants, as long as the pots are high enough to reach from a chair. Others rig hanging baskets with a pulley to make it easy to raise and lower the basket as needed.

There are a variety of tools available to make gardening easier, too. There’s one that makes it easy to grip a flower stem and cut it; you can get easy-grip tools such as trowels, cultivators and forks; and you’ll find watering devices that provide a thumb-based shut-off that is designed to be used by those with limited hand and finger mobility.

For more information about tools:

  • Carry-On Gardening: a U.K.-based charity devoted to making gardening accessible for those with physical challenges
  • Able Data: a source of assistive technology information, including tools for gardening
  • Wildflower Seed & Tool Company: provides a variety of tools designed to make gardening more accessible 


Participate in these Educational Web Calls

iPad Apps for Communication, Fun and Entertainment

Monday, April 15, 2013, 11 a.m. Pacific Daylight Time, 2 p.m. Eastern Daylight Time

Call-in toll-free number (US/Canada): 877.668.4490
Session number: 826 069 064
Session password: Atcallapril2013

How GA-A May be Useful in the Treatment of ALS

Dr. Jonathan Glass

Hosted and organized by The ALS Association's Research Department
April 23, 2013, 1 p.m. Pacific Daylight Time, 4 p.m. Eastern Daylight Time
Speaker: Jonathan Glass, M.D., Emory University, Atlanta, Georgia
Call-in toll-free number (US/Canada): 877.668.4490

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