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ALS Registry

December 2013


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

    Dr Kasarskis

    Dr. Kasarskis

    Deciding When to Stop Working

    Q: My husband has ALS and recently developed frontotemporal dementia or FTD. I’m worried about how our family gatherings will go over during the holidays this year. I don’t know how to explain his behavior to my extended family. Can you also tell me how it is related to ALS and what can be done about it?

    A: These are important questions. Until somewhat recently, it was thought that ALS would only affect the motor system and wouldn’t affect thinking, memory or personality. We now know that some people will also develop changes in personality and mental processes, something that is called frontotemporal dementia or FTD for short. It is also sometimes seen in other degenerative diseases of the nervous system. Neurodegeneration is not restricted to motor neurons but also includes parts of the brain other than the motor cortex.

    “Frontotemporal” refers to the front part of the brain (the frontal lobes) just above the eyes and behind the temples (the temporal lobes). When this area of the brain develops problems associated with ALS, people tend to become impulsive, lacking insight into the consequences of their actions. They may have trouble planning ahead for things.  Unfortunately, the changes make it more difficult for the person – and the family – to deal with ALS.

    To give you an idea of how a person can be affected by FTD, I’d like to tell you about a patient who had a fairly extreme form of the problem. She had ALS – with progressive weakness, difficulty chewing and swallowing – but those problems were almost minor compared to the changes in personality she experienced.

    A wonderful woman, she had been known to be very organized. As the FTD problem started to emerge, she would sometimes spend the entire day loading and unloading the dishwasher or might absentmindedly leave the stove burners on. Although she was very aware of who she was and where she was, she once ended up walking down the center of a major highway on the yellow line when her intention was just to take a walk in the neighborhood.

    Another patient would answer any question we asked her with an immediate “Yes honey,” and then struggle to give us the correct answer.

    One of the big challenges for the family is that people with FTD are not good at assessing recommendations from the healthcare team; they have trouble looking ahead as they consider treatment. Because they cannot make fully-informed medical decisions, those with FTD tend to be less likely to adhere to ALS treatment recommendations, and thus may not live as long as others who are able to use their frontal brain to think and plan well.

    People with ALS who have FTD may also have more trouble using equipment that is helpful in dealing with ALS. For example, we have all kinds of communication devices available – such as eye-gaze technology – to help people who cannot speak, but those with FTD cannot focus or organize their behavior to be able to use them.

    There are special tests done by neuro-psychologists that can be helpful for families. The results can tell you how impaired your family member actually is and in what ways. That information can help you know how you can best deal with the problems.

    As for treatment, physicians may also try various medications to see how they may help. Some patients may benefit from medications used to treat Alzheimer's disease.  If pseudobulbar affect (PBA) is part of the problem, then Nuedexta® may be helpful. It’s worth a try.

    Now, to answer your question about what to tell the family.  I would suggest you explain what is happening.  Understanding the underlying issue should help people respond to your husband constructively with patience and clear communication.

    On a pragmatic note, be sure you have power of attorney so you can make any necessary decisions for your husband and can take the lead on finances.  You don’t want to run into unintended financial problems that could occur if your husband acts impulsively.

    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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    Keeping the HO HO HO in the HOlidays

    By Barbara Bronson Gray, RN, MN

    For those faced with the challenges ALS brings, the holidays can bring mixed emotions, ranging from joy and excitement to stress, frustration and depression.

    But there are some concrete things you and your family and friends can do to help keep the holidays merry:

    Focus on the meaning of the holiday for you and for those you love and try to keep that at the forefront of your planning and gatherings. This is always good advice, but it may be especially meaningful now that you’re dealing with ALS.

    • Accept that the holidays will be different than they were before you developed ALS. It’s normal initially to try to keep things constant and carefully honor time-tested traditions – from the ornaments on the tree to the exact menu served on Christmas day – in a nostalgic nod to celebrations in years past.  You will need to embrace a new approach.
    • If you’re invited to parties that you can’t attend because the homes aren’t accessible to you, consider throwing your own party. You could ask each guest to bring a dish or have the event catered. Keep it simple and enjoy the company of friends and neighbors.
    • If you like being in charge of your family’s holiday dinner, know that you can still run things – but in a different way. Change from playing a physical role to focusing on planning, directing and organizing. 
    • Simplify gift-buying. Shop online or opt for gift certificates at restaurants, stores, theaters, or even museums. If you cannot wrap gifts yourself, put Post-It notes with the name of the recipients on the presents and enlist the help of a friend or neighbor.

    Feel free to share your frustrations with your family and friends about the challenges of dealing with ALS at a busy time. But know that there is still joy and fun to be had, especially if you put some thought into how you can manage to keep the ho-ho-ho in your holidays.

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    Fiscal Fitness: Saving Money on Prescription Drugs

    By Barbara Bronson Gray, RN, MN

    Even if you have health insurance or are covered under Medicare or Medicaid, the cost of prescription drugs can have a real impact on the family budget. Many of the newest drugs are especially costly, while the price of some medications has gone down as patents expire and the drugs have become available as generics.

    • Send your luggage straight to your destination. No more lugging your belongings, packages, or any equipment that you won’t need during your journey. Consider using the U.S. Postal Service. A Priority Mail large flat rate box costs $16.85, up to 70 pounds. United Parcel Service (UPS) and FedEx also offer attractive rates, especially if you don’t need the package to arrive the next day.
    • Use PreCheck security. Available at 92 U.S. airports, PreCheck allows U.S.citizens who have been “pre-cleared” to go through the security screening process more quickly. TSA PreCheck allows participants to keep their shoes, belts and lightweight jackets on. It also allows those pre-cleared to go through just a metal detector, rather than a body-scanner. Expect the program to be available in 350 airports by mid-2014. Apply for PreCheck online, and then verify your identity and get fingerprinted at a TSA PreCheck enrollment center. The application costs $85 and is good for five years. Learn more at tsa.gov/tsa-precheck.
    • If you’re flying out of the country, consider using a government program called “Global Entry.” It’s a U.S. Customs and Border Protection program that allows expedited clearance for pre-approved, low-risk travelers upon arrival in the United States. There are self-service kiosks at more than 40 airports. Once in the program, your passport and fingerprints can be scanned, and you can sail through immigration and customs. To join the program, you need a background check and an in-person interview. The fee is $100, and the membership is good for five years. Learn more at http://globalentry.gov/.
    • Check into your hotel more quickly. Some hotels allow you to check in at lobby kiosks by just swiping your credit card. All you have to do is approve the reservation, and the kiosk gives you your receipt, room assignment and keys.  Some hotels have expedited check-in using your mobile phone, and others even allow you to check in at airport kiosks, allowing you to skip the hotel lobby experience entirely. Ask about such features when you’re making your hotel reservation or check with your travel agent.

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    Giving Legacy Gifts

    By Barbara Bronson Gray, RN, MN

    Even if you have health insurance or are covered under Medicare or Medicaid, the cost of prescription drugs can have a real impact on the family budget. Many of the newest drugs are especially costly, while the price of some medications has gone down as patents expire and the drugs have become available as generics.

    But there are some ways you may be able to cut your costs:

    • Shop around. There are several organizations that offer discounts and information about reducing the price you pay for prescription drugs:
      • Goodrx.com: Its primary mission is to make smarter consumers who can make better choices when filling their prescriptions. Every week they collect millions of prices and discounts from pharmacies, drug manufacturers and others. It’s easy to search a specific drug to find the best price in your zip code. The website also offers discounts, coupons and savings tips. It allows you to compare prices for all FDA-approved prescription drugs at virtually every U.S. pharmacy.
      • RxOutreach.org: A nonprofit charitable organization committed to providing affordable medications for people in need, RxOutreach focuses on supporting low-income individuals and families who cannot afford the prescription drugs they need. It offers more than 500 different medications through its mail-in pharmacy.
      • Walgreens Prescription Savings Club: Members get special discounts off the cash price of more than 8,000 brand-name and generic medications, and other benefits, too. Membership is $20 a year for individuals and $35 a year for families. It’s designed to help people who don’t have insurance or whose insurance doesn’t fully cover the cost of medications. Walgreens says the average savings for the purchase of commonly prescribed quantities of brand name drugs is $28.58; and for most generics, the savings is $18.97.
    • Choose generic drugs. About 80 percent of FDA-approved drugs have generic alternatives that cost an average of four times less than brand name options.
    • Split higher-dose pills.  Many pills cost the same whether they are 40 mg or 20 mg, for example. Cutting them in half – using an inexpensive pill splitter – can save a lot of money. Ask your pharmacist if pill splitting makes sense with any or all of the medications you’re taking.
    • Find patient assistance programs.  Many pharmaceutical companies offer programs that provide their drugs at deep discounts, or even at no cost, if you qualify. Some also offer rebates, coupons and drug discount cards. You can check for patient assistance programs on the drug company’s website. Or visit needymeds.com for information on more than 6,000 programs.
    • Talk with your doctor. Review all the medications you’re now taking and be sure they’re all still needed. Make sure the dosages are up to date.  Ask your physician if no-cost drug samples might be available.
    • Choose generic drugs. About 80 percent of FDA-approved drugs have generic alternatives that cost an average of four times less than brand name options.

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    Participate in these Educational Web Calls

    Using Technology to Create Family Keepsakes                                      

    esented by Care Services, The ALS Association

    Monday, Monday, December 16, 2013

    11 a.m. Pacific Standard Time
    (2 p.m. Eastern Standard Time)   

    Call-in toll-free number (US/Canada): 877.668.4490
    Session number: 822 978 771
    Session password: Atcalldec2013

    https://alsa.webex.com/alsa/k2/j.php?ED=192786212&UID=1309646507&HMAC=d96e975ec031f51734c305a2cb821f7efacc2a69&RT=MiM0

    Altered Ribostasis: The Role of Perturbed RNA Metabolism in ALS and Related Diseases

    In a recent article in the journal Cell, Dr. Taylor reported research about the molecular processes that contribute to degenerative diseases such as ALS. The study suggests that some degenerative diseases may be promoted by the accumulation of protein in the nucleus or cytoplasm of cells, disturbing normal cell function. Understanding that process could help scientists develop new therapies.


    SpeakerDecember 18, 2013 1 p.m.  Pacific Standard Time (4 p.m. Eastern Standard Time)

    Speaker: J. Paul Taylor, M.D., Ph.D., faculty member, Saint Jude Children’s Research Hospital, Department of Neurobiology


    For more information: http://www.alsa.org/research/research-webinars.html

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