September 2011

This Month In . . .

• Ask the Doc 

• In Sickness and in Health:
  Managing the Mix of Marriage and Illness

• Advice from the Trenches

• The Flu Season…and You

• Medicine Storage

• This Month's Educational Web Calls

• Research Indicates TDP-43 and FUS/TLS Work Together  

• New Research Points to Common Cause of ALS

• Go to Bat for ALS

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

Edward Kasarskis, M.D., Ph.D. is Director of the multidisciplinary ALS Center at the University of Kentucky Neuroscience Center 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. 

Dr. Kasarskis

Q: I know two people with ALS, and both experienced a lot of stress in their lives. Could there be a connection between experiencing a great deal of stress and getting ALS?  And does pseudobulbar affect the course of ALS?

A: Honestly, there is so much stress in people’s lives, if there were a direct connection between stress and developing ALS, we would most likely be seeing many, many more people with ALS than we actually do.  But there is very little in the medical literature on this topic.

My personal observations support the concept that people who manage their stress well, who have adapted well to changing circumstances, and who have good social support systems, make informed, timely decisions about their disease and its management.  The ability to deal effectively with stress – certainly after being diagnosed with ALS – involves focusing the mind on constructive approaches to the illness, which contributes to better survival and quality of life.  These issues need more research.  We also know that people who go to multi-disciplinary ALS clinics experience enhanced survival as compared to those going to a single practitioner’s office for care.  I frequently tell patients that "you can’t do ALS by yourself,” and our multi-disciplinary clinics offer ALS patients a variety of expertise, counseling, and support.

How might all this be related to pseudobulbar affect, or PBA?  I wrote about PBA a few months ago concentrating on the clinical findings and the new treatment for PBA.  To recap, PBA can occur with many neurologic diseases, including ALS, brain injury, or stroke.  Patients may find themselves crying uncontrollably at something that is only moderately sad or laughing uncontrollably at mildly amusing things.  In a broader context, PBA can be part of a constellation of additional symptoms of cognitive difficulties, impaired planning, and impulsive behaviors (together labeled FTD, or frontotemporal dementia).  Hence some, but not all patients with PBA, may have trouble planning and executing activities or actions with an eye to the future, or can find it hard to follow simple directions. They can have difficulty following the health team’s recommendations or seeing the consequences of their actions, or inactions in this regard.  In many ways these issues likely cause stress for the patient (they certainly do for the family) as they add confusion and complexity to the patient’s environment.

Although the issues of stress, PBA, and FTD have not formally been linked in the research literature, common sense argues that stress is not helping the situation at all.  The bottom line about stress and ALS is relatively simple: To the extent you can find effective coping skills for dealing with the disease, you can expect to find real benefit. 

If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at awalters@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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In Sickness and in Health:
Managing the Mix of Marriage and Illness

By Barbara Bronson Gray, RN, MN

It’s no longer just the two of you. A serious chronic illness can quickly become a third party in a marriage.

The stresses and strains of ALS can significantly affect the relationship, especially as a spouse increasingly takes on the caregiver role. It’s worry. It’s fatigue. It’s frustration at not being able to do all the things you once loved and enjoyed.  It frequently involves tremendous role changes for you and for your family and friends. The experience plays out a little differently for everyone.

Yet there are things you can do to improve the situation. Understand that your marriage may need more attention than it did before ALS was diagnosed. Communication will be more important than before, as will be expressing gratitude to each other, and feeling free to talk about each person’s needs for time alone, help, support and advice.

You may find you have to work a little harder to find ways to keep the romance going: planning a fun day trip, seeing a movie, lighting candles at dinner time, listening to music you’ve always loved, getting out in the back yard to watch a meteor shower or getting a weekend away. Be sure you find time to be alone together and enjoy each other’s company.

Both spouses will need to accept that the household won’t run as smoothly as it did before. It can’t possibly. A sense of humor will help. If you can get outside assistance, that could ease the strain. But if you can’t, you may have to lower your standards of housekeeping, gardening and home maintenance since the two of you will have less time and less collective physical ability than you did before.

Be sure you see the physician together. You’ll find it helps to have four ears. And as you have conversations with the physician and ALS Association Certified Center staff, you’ll find you both have lots of questions to ask of the entire team.

Keep saying thank you to each other every chance you get. You’re both doing things for each other in different ways and like never before.  Try to find a way to give the caregiving spouse valuable time off regularly to recoup and recharge, perhaps through a respite care program or the help of friends.

And if, despite all the effort, you feel the marriage is suffering from the impact of ALS, don’t hesitate to seek professional counseling from a therapist or through your church or synagogue. It can be helpful to sort out any issues and improve your communication.  

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Advice from the Trenches

Sandra Stuban with her husband, Steve

Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She’s the author of The Butcher’s Daughter: The Story of an Army Nurse with ALS, in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer and nursing leader.

Q: I’m on a limited income and yet need help, both with some of my daily activities (like bathing and dressing), housekeeping and shopping. How would you recommend best employing someone for just a few hours a day, and get the majority of your needs met?

A. Many people choose to employ a live-in caregiver. This may be an option for you but the decision requires careful thought and consideration of some important factors. As a first step, you should make a list of every activity you want help with and its estimated time requirement. What may seem like only a few hours a day could actually be much more. Exactly how long is needed to help you bath and dress? How many hours does it take for housekeeping? Is shopping done in one or two hours? Will your caregiver also be responsible for the laundry? What about preparing your meals? The hours add up quickly. This list will be helpful when discussing openly with your prospective caregiver their exact responsibilities. They will appreciate your honesty.

Next, you need to determine their compensation package. In addition to room and board (which includes utilities, washer and dryer use, meals), how much will you pay them? In researching your question, I have seen live-in caregivers paid $8-$10/hour. I have also seen them paid by the month; I saw one ad advertising $1000/month. This will require some research on your part to determine what is a fair and competitive salary in your area. Your pay arrangement and the list of responsibilities will form the basis of your caregiver’s work agreement or contract.

Here are some other questions and thoughts to consider. With a set schedule, could your caregiver have another full-time or part-time job? Could your caregiver be a part-time student? Will they have one or two days off every week? How will you manage on their scheduled days off? As you go through the interview process, remember to ask for and check references, take notes, and perhaps pay to have a background check done. This person will be intimately involved in your life so you want to be sure you choose someone who is not only kind and caring but also compatible with your personality and lifestyle. Many people employ a live-in caregiver successfully; you can too with a little forethought and preparation.

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This Year’s Flu Season…and You

It’s almost fall, time to talk about flu shots. Updated guidance for influenza vaccination for the upcoming 2011-2012 flu season has been released by the Centers for Disease Control and Prevention (CDC). This year’s flu vaccine virus strains are identical to those in last year’s vaccine. Although the strains are the same as those used in last year’s vaccine, even people who got vaccinated last year should get the flu shot again this season.

Highlights of the recommendations include:

• Supply is expected to be good. The CDC is anticipating that about 166 million or so doses of vaccine will be produced this year, as compared to 157 million doses that were distributed last year.

• Your best bet is to get the flu vaccine before the flu hits your community. Ideal months are September and October. But should you not get vaccinated then, it’s better later than not at all.

• A variety of different types of influenza vaccines are expected to be available during the upcoming influenza season, all containing the same antigenic composition.

For more information, visit http://www.cdc.gov/flu/.

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Medication Storage: Avoid Heat, Cold and Humidity

Extreme temperatures and humidity can have a big effect on both prescription and over-the-counter drugs. Most pharmaceutical companies recommend their products be stored at a temperature of 68 to 77 degrees to guarantee product integrity. Some experts say anything between 58 and 86 degrees is probably fine. But during the heat of summer and the cold of winter, depending on where you keep your medications, temperatures could go outside the recommended limits and either lose potency, physically change or be dangerous to take.

Test strips are very sensitive to humidity, and antibiotics, when decaying, can cause stomach or kidney problems.  Some drugs, such as anticoagulants, hormones, and insulin and seizure medications can be especially sensitive.

Experts suggest you avoid keeping medications in the bathroom because it’s a high-humidity environment. Store them in a cool dry place like a kitchen cabinet or a closet. If possible, keep the medication in its original packaging.  If you take insulin, keep unopened bottles in the refrigerator and open bottles at room temperature.

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Participate in these Educational Web Calls

Assistive Technology Educational Series

Social Media and ALS: How to Network

September 26 (Monday) @ 11:00 AM, PT (2:00 PM, ET)
 
Guest Speaker: Alisa Brownlee, ATP, The ALS Association, Greater Philadelphia Chapter

Call-in toll-free number (US/Canada): 866-699-3239
Meeting Number: 824 520 298
Meeting Password: TopicCall2011
https://alsa.webex.com/alsa/j.php?ED=154187387&UID=1174125702&PW=NY2ZhMTBkOGY3&RT=MiM0

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Research Update

Nicholas Maragakis, M.D.

Exercise Clinical Trial for ALS

September 13 (Tuesday)

Speaker: Nicholas Maragakis, M.D.; Johns Hopkins School of Medicine, Baltimore, MD

Despite decades of discussion over the potential benefit or harm of exercise in ALS, no study has compared two forms of exercise (resistance and endurance) with the current standards of ALS care: stretching and range of motion exercise. The ALS Association is funding this research, in a randomized, controlled study. The long term goal of the study is to design a larger efficacy study and eventually a develop a consensus statement on the potential benefits (or detriments) of exercise in ALS.  

For information about how to join this call, please visit www.alsa.org, click on “Our Research.”

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Research Indicates TDP-43 and FUS/TLS Work Together

Although several new genes have now been linked to ALS including the recent exciting finding of mutations in the gene Ubiquilin-2 linked to familial ALS, exactly how these mutations cause disease remains unclear and is the focus of research in labs world-wide. Two proteins with similar structure and function, TDP43 and FUS, linked to familial ALS with and without frontotemporal dementia are thought to be involved in the disease, either by causing some new toxic property or by a loss of their normal function.

Click here to read the full article.

New Research Points to Common Cause of ALS

According to an article in the journal Nature, investigators from Northwestern University Feinberg School of Medicine have identified a new gene linked to familial ALS involved in the processing of accumulated proteins. This provides further support for abnormal protein handling as an underlying cause of ALS.

Optimal functioning of the neurons relies on efficient recycling of the protein building blocks in the cells. In ALS, it appears that the recycling system is abnormal. The cell can’t repair or maintain itself and becomes severely damaged. According to researchers, this breakdown occurs in all three forms of ALS: hereditary, which is called familial; ALS that is not hereditary, called sporadic; and ALS that targets the brain, ALS/dementia. Investigators have identified this new gene change in familial ALS with and without frontotemporal dementia.

Click here to read the full article.

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Go to Bat for ALS

The ALS Association is pleased to announce a new partnership with State Farm Insurance. Their "Go to Bat" program is an online, charitable initiative that allows donors to support their favorite nonprofit organizations.

Please support The ALS Association by visiting www.statefarm.com/gotobat; select The ALS Association as your charity of choice; and then swing for the fences in the State Farm Go To Bat game to increase the batting average of Team ALS Association.

Each week from now until the end of September, State Farm will award $18,000 to the charity with the highest batting average. As an added incentive, one individual who goes to bat for the winning charity will be randomly selected to receive a trip for 2 to games three and four of the 2011 MLB World Series!

You increase your chances and The ALS Association's chances of winning by returning daily to the Go To Bat site and playing the online game. You can even earn extra points by sharing your score with your Facebook friends!

A pre-game ceremony at the 2011 MLB World Series will recognize the individual winners and winning charities. State Farm will also announce and present a $25,000 donation to the charity that finishes with the highest Go To Bat batting average.

Register for the challenge today and help us Go To Bat for the fight against ALS!

Play Ball!

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