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ALS Registry

September 2013


 

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

Dealing with Muscle Pain and Tremors

Dr Kasarskis

Dr. Kasarskis

Q: I’m a little confused about muscle pain and tremors. I think that I experience both. What is the difference between them and the best way to treat each of them?

A: Muscle pain and tremors have only one thing in common: they involve muscles. But they are, in fact, very different.

In the pure sense of the word, a tremor is a very rhythmic movement. You may have seen tremor in people with Parkinson’s disease. It’s a back-and-forth, somewhat rhythmic, involuntary movement. In other conditions, a tremor can occur if you try to perform some very coordinated, fine activity such as threading a needle.  Some ALS patients use the term "tremor" when they are actually having muscle failure.  

When people push their muscles to the limit, they can see their muscles react. It can look like a tremor because the muscle cannot generate any more force. You see this phenomenon every four years in the Olympic power weight lifting event as the contestants reach the limit of their muscle strength.  For people with ALS, reaching that limit may not seem to take a lot of effort.  For example, just raising your wrist up from a table top against gravity can be challenging, and the muscle response may look like a tremor because the action can't be sustained.

The source of muscle pain in ALS, on the other hand, tends to be a little more complex. People often get discomfort in their muscles from cramping or spasticity.  Everyone has had muscle cramps from time to time, perhaps after sitting or lying in an awkward position. Some people get leg cramps at night. That sort of phenomenon is commonly seen in people with ALS.

Another kind of muscle pain occurs when people are trying to move, using almost all their power. This can occur in people with ALS in an activity that may seem very basic, like brushing their hair. Others may experience joint pain from their shoulder, as an example.

Treatments for muscle pain are aimed at essentially reducing the muscle tension or tone and spasticity. Oral drugs like baclofen and tizanadine (Zanaflex) are often used, starting at a low dose and gradually increasing the dose as needed.  These medications are gradually adjusted to reduce the muscle tension just to the point that it reduces your pain but not so much that the reduced muscle tone makes it hard to stand, get out of a chair, or walk.  Baclofen usually has very few side effects, while tizanadine can cause drowsiness and some mouth dryness, which can be a plus for those with difficulty managing saliva. Unfortunately, some people have trouble tolerating these drugs at all. If these two drugs don’t work for muscle pain, other drugs can be used --
cyclobenzaprinte (Flexeril) and  metaxalone (Skelaxen).

People with ALS sometimes fail to drink enough fluids, often avoiding liquids because of mobility challenges. But hydration – getting enough fluids – can sometimes help reduce muscle cramps and spasticity.  It’s also important to make sure your body’s electrolytes are in a healthy range.

Sometimes people benefit from being instructed – often by a physical therapist – about how to overcome muscle cramping. For example, if your calf muscle goes into a cramp, lifting your foot and toe up pulls the muscle in the opposite direction that caused the cramp, which can overcome the tension. There’s a way to provide a counter-force to most of the muscles that “cramp up.”

Occupational therapy can also be helpful because you can learn how to use adaptive equipment or other strategies to overcome the difficulties your muscle problems are causing.

Even though a drug may work for a while, over time it can sometimes become less effective. It’s important to be reassessed regularly to see if the therapy or treatment you are using is still the best approach for you.

The complexity of muscle problems and the tremendous impact those issues can have on the daily lives of people with ALS point to the importance of being seen in an ALS Association Certified Clinic. At the clinic, there are a team of experts representing many disciplines – medicine, respiratory therapy, physical therapy, occupational therapy and nursing – will work together to address your problems.

Edward Kasarskis, M.D., Ph.D. is Director of the University of Kentucky ALS Multidisciplinary Clinic in Lexington, Ky., 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 theexchange@alsa-national.org.  Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. 

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Fiscal Fitness: How to Help Prevent Medical Identity Fraud

By Barbara Bronson Gray, RN, MN

Fiscal FitnessThere’s one item in your wallet you may not have been guarding all that carefully: your health insurance or Medicare card. After all, it’s relatively easily replaceable, and it’s not a credit or debit card – or your driver’s license. But beware: medical identity theft is on the rise.

Experts estimate that there were almost 2 million victims of medical identity theft in the United States last year, representing at least $40 billion in costs.

What happens? People get their hands on your health insurance card, create an out-of-state driver’s license with your name and their photo on it (just in case they’re asked for it), and then they start using your card for healthcare exams, procedures, medications and even surgeries.

They get your card from a variety of places: physician offices, clinics and small hospitals, and possibly diagnostic centers and clinical laboratories. Some may be successfully hacking into the insurance companies’ websites.

Because most medical offices and other health facilities don’t ask for anything but your health insurance card when you check in at the front desk, it’s not hard to see how easy it could be for someone to get their hands on your card.

The potential issues could affect more than your pocket book. Because people with your card could be posing as you in a healthcare interaction, you could end up with a medical record in your name that has another person’s data and health problems in it. That could cause a confusing or dangerous interpretation of your health issues.

What can you do to prevent medical identity theft?

•    Be on the alert if your physician asks you a question that seems out of left field. For example, if he or she wonders how you’re feeling after your bout with  pneumonia – and you didn’t have pneumonia – speak up and ask more about what is in your medical record.
•    Review every benefit statement you receive from your health insurance company to make sure that each and every visit, prescription, lab and diagnostic test and any procedures and surgeries were yours.
•    Look out for any invoices related to health care that you don’t think are yours. Report them immediately.
•    Create a strong password for logging into your health insurance account. (Strong passwords are longer than 6 characters and have a combination of letters, symbols and numbers).
•    Be sure to track your healthcare bills and insurance benefit summaries closely. If you have suddenly reached your deductible – and that doesn’t make sense to you – contact your health insurance company immediately.
•    Report any questions or errors immediately and monitor your credit report at least annually, and ideally quarterly, to see if there is evidence of someone seeking credit on your behalf.

Learn more about medical identity theft from the Federal Trade Commission.

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Accessible Art

By Barbara Bronson Gray, RN, MN

If you find yourself longing to visit some of the world’s greatest art museums but can’t go there in person, you may want to explore The Art Project Accessible Artby Google. It’s a unique collaboration with more than 250 of the world’s most famous art institutions to enable people to discover and see artworks online in unbelievable detail.

Google has put tens of thousands of works of art from more than 6,000 artists online. While that might sound a bit overwhelming, the free website has organized the resources in such a way that it’s easy to scan the list of museums, search for a favorite artist, or even click on themes such as “beautiful light,” “cool hats,” “fun in the sun,”  “dramatic waters,” or “romanticism to realism.” You can browse by city, museum name or collection.

Many of the works have been photographed in extraordinary detail using extremely high resolution technology, enabling you to examine the details of brushwork, all in more detail than even the naked eye would provide.

You can even build your own “favorites” gallery from the collection of 45,000 artworks, adding your own notes or comments, if you like. Then you can share your gallery with friends and family. You can also compare paintings or other works of art side-by-side.

While many of the collections come from the biggest and best known museums – like the Metropolitan Museum of Art in New York, and the Uffizi Gallery in Florence, you’ll also find lesser-known treasures such as the Monastery of Saint John the Theologian in Patmos, Greece and the Sao Paulo Street Art in Brazil, or the Santiniketan Triptych in the National Gallery of Modern Art in Delhi. Check out the Olympic Museum in Lausanne, Switzerland, the Palace of Versailles, and the Musco Sorolla, in Madrid.

And, if you long to see the galleries themselves, a specially-designed Street View “trolley” took 360 degree images of the interior of some of the museums, which were stitched together, allowing smooth navigation of more than 385 rooms within the museums. You can also explore the gallery interiors directly via “Street View”, in Google Maps.

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Just Roll On In

Kenguru CarFor those using wheelchairs, getting in and out of a car or van can be difficult and time-consuming. But a new electric car, now in production, suggests technology may soon be available to make wheel-chair mobility a little easier.

Called the KENGURU®, the single-occupancy car is made of fiberglass on a stainless steel frame and has a back door that opens with a ramp, making it easy to roll into the car directly from the rear. It’s a battery-powered vehicle that can be charged in most household outlets, and at just 7 feet long and 5 feet high, it’s convenient and easy to park almost anywhere.

Designed more for short, local trips, the car can only travel 60 miles without an eight hour re-charge and can’t go faster than 25 miles per hour. But the company says it’s planning to make the car more highway-friendly by increasing its top speed in future models.

For more information, visit http://www.kenguru.com/.

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Participate in these Educational Web Calls

Research Updates

Hosted and organized by The ALS Association’s Research Department

Title: "C9ORF72 – the role of RNA toxicity in ALS"

Speaker: Rita Sattler, Ph.D.       
Assistant Professor, Dept. of Neurology and
Brain Science Institute
Principal Scientist, NeuroTranslational Drug Discovery Program
Johns Hopkins School of Medicine


Date: September 24th 4.00-5.00 pm Eastern Time
Meeting number: 825 155 036
Meeting password: Password: Chicago1

Call-in toll-free number (US/Canada):1-877-668-4490

https://alsa.webex.com/alsa/j.php?ED=191203402&UID=1302752902&PW=NOGRmYmM5ZjY5&RT=MiMxMQ%3D%3D

Join this free online training session offered by the ALS Association’s Care Services:

iPads

iPads for People with ALS

Monday, September 23, 2013
11:00 am, Pacific Daylight Time (2 p.m. Eastern)

Speaker: Alisa Brownlee, ATP

Session number: 673 491 741
Session password: ATSept2013
Call-in toll-free number (US/Canada): (877) 668-4490

https://alsa.webex.com/alsa/k2/j.php?ED=19268953&UID=119461483&HMAC=55102ffa5303cf92132b5f01ab9543e93eb02732&RT=MiM0 

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