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ALS Registry

August 2013

In this Issue . . .  

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

Dr. Kasarskis

Restless Nights, No Clear Reason

Q: My mother was diagnosed with ALS about five months ago. She had been very healthy, and then the first sign that she developed was slurred speech. Now she is unable to speak or walk, and while she is still able to feed herself, she's starting to have a hard time with that. But she's also having a lot of trouble sleeping, and she moans or cries about every hour throughout the night and needs my dad to put her into her wheelchair and take her to the bathroom. Most of the time it turns out she didn't need to go. The doctor has put her on sleeping medication, but it's not working all that well. What should we do?
Danny, Florida

A: I'm very sorry to hear about your mother. Without hearing more, it's hard for me to know for certain what to recommend, but I think it may helpful to you  and hopefully for other readers
if I give it a try.

There are a few things to consider. First, it's possible that something other than ALS is causing your mother's night time discomfort and making her want to go to the bathroom so often. She may have a urinary tract infection, which typically causes someone to want to urinate frequently, often with a sense of urgency. One option would be to ask your physician to test her urine to see if she has an infection.

You mother also might have what is called an "overactive bladder," something that can be caused by muscle spasms. If this is what she is dealing with, her physician could prescribe a medication, called an "anti-cholinergic," which could reduce bladder spasms and might incidentally also help her deal with any excess saliva, a common problem among people with ALS. That's because a side effect of anticholinergic drugs is that they decrease saliva production. Excess saliva is often hard for people with ALS to deal with, especially when they have trouble swallowing.
She also may be agitated or upset for other reasons. She could be having muscle cramps or restless legs syndrome, something that seniors frequently encounter, with or without ALS. There are drugs and treatments available for that.

Your mother may also be experiencing respiratory problems. People with ALS often develop difficulty breathing, which is related to weakness in the muscles that are involved in respiration. It's possible that sleeping medication could make the situation worse. That's because as she sleeps more soundly, she may find it harder to breathe deeply, and she awakens when the amount of oxygen in her blood dips below the necessary level for good oxygen circulation in the body. That might cause her to feel agitated or uncomfortable, and let's face it: going to the bathroom is a natural thing to want to do when you're uncomfortable in the middle of the night.  Again, I am speaking in generalities since I have not evaluated your mother personally.

Your mom might benefit from pulmonary function studies or possibly an "overnight sleep study" to assess the situation. Her physician may decide to make it easier for her to get the oxygen she needs during the night by giving her what is called non-invasive ventilation ("Bi-Pap"), a pressurized breathing system that involves putting a plastic mask over her nose and mouth at night, with a machine doing some of the breathing work for her.

Complicating all of this is the fact that your mother is having trouble speaking. That means that her specific needs are hard for her to express, making it harder for your dad to make her comfortable. A variety of communication aids and devices are available to help with that.

All of these possibilities point to the fact that treating ALS is multi-faceted and involves a broad understanding of the unique challenges of the disease. That's why I would strongly recommend that your mother regularly visit an ALS clinic in addition to continuing her care with her primary care physician. In the clinic, she will be seen by a neurologist who specializes in ALS and a team of people, including respiratory and physical therapists, a nutritionist, an occupational therapist and a nurse, who would provide her with practical, multi-disciplinary care and support.

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.   

Vast Majority of Caregivers Use Online Resources

By Barbara Bronson Gray, RN, MN

If you find yourself frequently going online to find answers about health care for yourself or someone you take care of, you're not alone.

A new report by the Pew Research Center and the California Healthcare Foundation says caregivers are using the internet to get a wide range of health-related information. Interestingly, caregivers are more likely than are others to gather health information online, the study says.

The report, based on a nationwide telephone survey of about 3,000 U.S. adults, says that caregivers  by necessity  tend to become health information specialists, using the internet to research health conditions and treatments.

In the survey 72 percent of caregivers reported going online to find health-related information. A majority of survey respondents said they participated in an online social activity related to health, and almost half sought information about a diagnosis on the Internet. Yet only 24 percent searched for drug information online.

Incidentally, caregivers represent a substantial fraction of the total population. The survey found that four out of ten U.S. adults are caregivers.

The researchers acknowledged the immense role family caregivers take on, which is part of the reason they need to seek information from a broad range of sources:

"They have the safety, comfort, and even the life of a loved one in their hands. They are asked to perform a dizzying array of medical and personal tasks outside clinical settings and the stakes are very high."

The survey also found that caregivers are highly likely to gather advice from clinicians, family, friends, and peers and to track their own and their loved ones' health data.

Accounting for differences in age, income, education, ethnicity and overall health, caregivers are more likely than are non-caregivers to tap both online and offline sources of information. For example, 28 percent of caregivers say they got online and offline advice and support from family and friends, compared with 14 percent of non-caregivers. Thirteen percent of caregivers were in contact with a clinician both online and offline, compared with 5 percent of non-caregivers. And 10 percent of caregivers obtained online and offline information and support from people who shared the same health condition, compared with 5percent of non-caregivers.

The survey found that caregivers:

  • Go online specifically to try to figure out what condition they or someone else might have.
  • Consult online reviews about drugs and other treatments.
  • Track their weight, diet, or exercise routine.
  • Read online about someone else's personal health experience.
  • Go online to find others with similar health concerns.

More than 70 percent of caregivers track their own weight, diet, exercise routine, blood pressure, blood sugar, sleep patterns, headaches, or some other health indicator.

To view the full report, visit: 

Fiscal Fitness: Tips for Managing the Cost of Care at Home

By Barbara Bronson Gray, RN, MN

One big challenge of living with ALS is the cost of getting care and support at home. According to Genworth Financial, the median national rate for home care through a licensed agency is $19 an hour, which is up 2.3 percent from last year.

In comparison, adult day health care  where social and related support services are provided in a community facility for a day, or some portion of a day, costs about $65 a day.

It's all rather expensive. But experts say there are some things families can do to help reduce the financial burden:

Check out the "Aid and Attendance" benefit available to families of wartime veterans. It pays up to $2,054 a month to qualified, married vets. (Single veterans and surviving spouse may qualify for smaller payments). To qualify, vets must have served at least 90 days in active military service, including at least one day during a war. To apply, go to and go to "Regional Benefits Offices" or "Veterans Affairs Offices."

Consider getting respite care  to give the caregiver a break  from a local social services agency, long-term care provider, hospice or nonprofit. Check out options via Eldercare Locator ( or call (800) 677-1116.

Talk to your accountant about potential tax breaks for medical expenses and any remodeling required to allow the person with ALS to live at home. Adding an elevator, building a ramp, widening toilet or shower areas or doorways to accommodate a wheelchair  all may qualify for tax deductions, with a physician's prescription. The amount that is deductible does not include the amount the remodeling adds to the home's value, experts say. But that "improved value" is often a small percentage of the cost of the remodeling.

Consider hiring home care workers directly, rather than going through an agency. That can reduce the cost of care by as much as $100 a day, but it requires that you follow laws about working hours, payroll taxes and disability insurance. Experts recommend you get a thorough background check and references for anyone you hire directly.

Talk with your accountant about whether expenses may qualify for a federal income tax deduction, which requires that medical expenses be 10 percent or more of adjusted gross income, or 7.5 percent for people 65 and up.

Learn more about the cost of care in your state by clicking on a U.S. map, at Genworth Financial: 


Got the Back to School Urge? Six Places to Find Fabulous Online Courses and Videos

By Barbara Bronson Gray, RN, MN

As summer begins to fade, and the stores are suddenly full of back-to-school supplies, it's not uncommon for adults to get a bit nostalgic about new notebooks, zippered pencil cases, and nicely-sharpened number 2 pencils.

But for those who find they want to go a step further and get a little exposure to a topic that tickles their fancy  or even want to take a full course at one of the world's top universities  there are a wide range of free online resources for courses on literally thousands of topics.

Some, such as the ones you'll find on Ignite or TED, are short  between five minutes and 50 minutes long  and others involve weeks of sequential lectures with reading lists and even quizzes. The vast majority are not for course credit but are provided solely to enrich the lives of those who want to study something they've always been interested in, nurturing a new hobby, getting a broader perspective, or even learning about an unusual topic that just seems fascinating.

All you have to do is visit the website and noodle around, looking for what interests you. For longer classes, you may be asked to enroll or to simple download the course. For shorter classes, you can watch right away.

Here are 6 no-cost "online universities" you might enjoy:

  • Academic Earth Offers courses from about 50 top universities, including Harvard, MIT and Stanford. Topics include everything from "Practical Math: How to Take a Punch," to "Why World War II Made Us Fat."
  • Coursera Currently offering 410 courses that typically include videos and learning tools, such as online quizzes. New courses are added regularly, and you can sign up to be notified when a class about a topic you're interested in becomes available.
  • iTunesU More than 500,000 courses designed to be used on the free iTunes app for iPhones or iPads. Topics are wide-ranging, from European history to foreign languages, literature, science, health, and much more. iTunesU offers educational material from the New York Public Library and MOMA (the Museum of Modern Art). You can store your materials from the courses in iBooks.
  • Ignite The shortest courses you'll ever take: each is a five-minute video sharing something interesting, innovative or inspiring. For example, popular now are "The Virtues of Failure, "How to Work a Crowd," and "The Practicality of Pessimism."
  • Khan Academy Presents more than 3,000 videos and video series on topics ranging from math and science and college basics to art history, the humanities and health.
  • TED talks Educational videos taped during live presentations, typically between 20 and 50 minutes long, on a tremendous range of topics, including body language, vulnerability, and a teenager's promising test for pancreatic cancer.


Participate in these Educational Web Calls

Care Services invites you to participate as an attendee in the following online training session:

Topic: Home Modification - Without a Contractor
Date: Monday, August 19, 2013
Time: 11:00 am, Pacific Daylight Time
Session number: 677 223 945
Session password: ATAug2013

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

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