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ALS Registry

November 2011

This Month In . . .




exchange_nfcmEach November, The ALS Association recognizes National Family Caregivers Month, and we pay tribute to the individuals who provide assistance to people with physical, developmental or emotional needs.

Caregivers encounter many challenges in dealing with ALS, some of which include the new experience of providing assistance to those developing physical limitations affecting mobility, swallowing, speaking and breathing. Potential cognitive changes that may affect some diagnosed with Lou Gehrig's Disease can present additional challenges. An ALS diagnosis impacts every aspect of caregivers' lives as they adjust their efforts to meet ongoing work, family, personal and financial obligations, which change as this disease progresses.

To help caregivers cope with the effects ALS has on individuals, our Chapter will provide various resources throughout November to empower them to address the daily issues they may experience in tending to a person with Lou Gehrig's Disease. These resources will include webinars, daily "Tips for Caregivers," and information on respite care and coping with burnout.

In addition, throughout November, we are posting special video messages from people with ALS, ALS Association President and CEO, and Tony Award winning-actor Jason Alexander, who is perhaps best known as the character "George Costanza" from TV's "Seinfeld." 


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

Dr. Kasarskis

Q: Like many people, I’ve had a few chronic conditions develop over the years. Now, on top of all that, I’ve recently learned I have ALS. What should I know about how the ALS affects other health problems, and how other health issues affect ALS?

A: ALS doesn’t exist in a vacuum. It happens to you when you’ve been busy living your life. If you have had injuries or other medical conditions, ALS piles itself on top of whatever else you and your healthcare team have been managing. Sometimes other issues suddenly spring up while you’re dealing with ALS. All these situations are termed “co-morbidities,” which basically means that two or more conditions are occurring at the same time and may complicate your treatment and care.

Sometimes the complexity of the co-morbidities can even affect your doctor’s ability to make the diagnosis of ALS itself. For example, I recently saw a patient in our ALS clinic who had previously had a motorcycle injury to his neck and spinal cord, then had a spinal fusion, and then a nerve injury at his elbow causing hand weakness. Now he appears to have new progressive weakness on top of all this, but his co-morbidities make the diagnosis of ALS much more difficult.

Some people with ALS also have chronic obstructive pulmonary disease (COPD) from smoking or asthma, both of which can make the respiratory problems due to ALS more difficult to manage since these patients are essentially fighting two separate disorders affecting breathing.

Others with ALS also have diabetes, heart disease, or cancer and some have had years of sleep apnea. Patients may also have liver dysfunction, which could potentially affect their ability to take Rilutek® (riluzole). As you can imagine, ALS plus another major condition is sometimes much more that 1 + 1 = 2.

For these reasons, it’s critical when you have several different conditions to make sure that everyone on your healthcare team physicians, respiratory therapists, nurses, physical therapists, and others is aware of your total health status. Bring a list of all your diagnoses and all the medications you are taking with you to each healthcare appointment. It’s also critical to be sure other healthcare providers, such as dentists, are also aware of the full spectrum of diseases you’re dealing with. Sometimes it may be helpful for physicians to talk with each other by phone about your situation, especially if your condition is changing or if you are planning to have surgery or start a new treatment.

You may also experience new symptoms and wonder, “Is this due to ALS or something else?” Ask your neurologist and other members of the clinic team when you have such a question. They usually can help you sort out how your various issues and medications may be affecting you.

Be prepared for your physician and clinic visits. Bring a checklist with your questions and concerns. As I often tell people, “the best prepared patients get the best care.” This is true for anyone with multiple diagnoses and especially true when one of the diagnoses happens to be ALS.

If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally. 


New Information to Better Navigate the VA System of Benefits

Information is available now to help veterans and their families understand the benefits available through the VA and better navigate the system. Helpful fact sheets on “Catastrophically Disabled Veterans” and “Enrollment Priority Groups” are now available through VA Health Care. For copies, go to:


Advice from the Trenches

Sandra Stuban

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: Do you have any suggestions about how to enjoy the holidays? I find myself sad that I cannot do things the way I used to and feel a little overwhelmed, but I want to do all I can to enjoy my family and friends and to help them have a good time, too.

A: With the holidays fast approaching, it’s a time for family get-togethers, giving thanks and sharing fun times. But with ALS intruding in our life and lifestyle, it’s easy to fall into a mindset of believing that this year will never be the same as last year which leads to disappointment and unfulfilled expectations. It’s necessary to change this way of thinking from being consumed with the negative to taking a more positive approach. Here are several things to consider and think about as the holidays draw near.

  • First, you should acknowledge, accept and adapt to the fact that the holiday will be different. But know that celebrating a holiday in a different way is not necessarily a negative experience; it can be very satisfying, if you approach it with the right attitude.
  • Speaking of attitude, ALS may take our strength and movement, but it can never take our approach to things. The way we deal with our limitations and obstacles is unique to each of us. Personally I refuse to allow ALS to define who I am.
  • As you prepare for the holidays, incorporate your new lifestyle in a meaningful way into new traditions. That means figuring out how you will transition from your physical role during the holidays to one that involves more planning, coordinating and delegating. For example, you can plan the menu, invite the guests, share recipes, assign food to bring, delegate duties, make someone in charge of games and activities, and much more. There is really no need for you to be physically in the thick of the bustle, your presence is felt in everything everywhere because of your planning.

So, there is really no reason why this holiday season can’t be as memorable and enjoyable as any!

If you would like to submit questions for a future Q & A, please send your questions to Amber Walters at Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.


Caregiving Has Its Rewards

caregivingWe all have heard the litany of problems associated with long-term caregiving. But a new study suggests there are hidden benefits as well. Lisa Fredman, a Boston University epidemiologist, had been studying the differences between caregivers and non-caregivers in four cities and found that caregivers had lower mortality rates than do non-caregivers, over an eight-year period.

In another study of 900 women, Fredman and her colleagues learned that high-intensity caregivers maintained stronger physical performance than did non-caregivers. Their strength was measured by tests such as grip strength, walking pace and the speed with which they could get up from a chair. The researchers also looked at cognitive function and found that caregivers do significantly better on memory tests than do non-caregivers.

The bottom line: the challenging and stressful role of being a caregiver can bring unexpected physical and cognitive benefits.

For more information on this research, visit


The Unique Challenges of Long-Distance Caregiving

exchange_1111_02By Barbara Bronson Gray, RN, MN

Day in and day out, caregiving poses a broad set of challenges. But for those family members who live far away but want to be supportive and involved, there is a unique combination of problems. That’s because there is often a combination of anxiety, guilt, frustration, confusion, and a sense of disconnection.

Polly Mazanec, an assistant professor of nursing at Case Western Reserve University in Cleveland, did a study looking at the plight of long-distance caregivers who number an estimated 14 million in the United States. She found that they are typically more anxious than are local caregivers -- who are able to see what is happening for themselves -- and often feel out of the loop.

Top concerns of long-distance caregivers include lack of knowledge about what is going on and a sense of being disconnected from the decision making. They aren’t certain when to visit, and they sometimes feel they can’t trust information they hear from siblings or others, sensing their relatives might be trying to protect them. When they ask questions trying to better understand the situation, they feel they upset their family members, who sense the long-distance caregivers are second-guessing their decisions.

Opening up avenues of communication with the healthcare team is important to many long-distance caregivers. Most want to be able to talk directly with their loved one’s healthcare providers now and then and hear what is going on directly. With the person’s permission, there is no reason members of the healthcare team can’t talk with long-distance caregivers. Seek them out by phone or email. Being in the information loop can help you know what would be most helpful to everyone involved.

Mazanec says that while physical hands-on caregiving is exhausting, emotional caregiving (from a distance) is actually even more distressing. What can long-distance caregivers do to improve the situation? Here are a few suggestions from Mazanec and others:

  • Clear up any communication obstacles if at all possible. Find a way to say something like, “I can only imagine how hard it is to be the one who has direct responsibility day after day. I want to do all I can to help. Tell me what you need if you can. One thing I would benefit from is having a system where I can stay up- to-date and get the latest information. What can we work out for that?”
  • Visit as often as you can. If obligations or financial resources don’t allow that, see if a friend or neighbor in the area can check in on your parent or loved one.
  • Feel free, in concert with your siblings or other family members, to talk directly with the healthcare team with the patient’s permission. Explain to your family that you may think of questions they don’t have, and it’s helpful for you to be able to have a direct conversation with the healthcare providers. Be sure to give feedback to your siblings and family members about what you learn.
  • Support the close-by caregivers in ways that will be meaningful to them. That could mean anything from sending them thank you notes or home-baked cookies to flowers, a gift certificate to a dinner out, or tickets to a concert. Let them know you realize the weight of the responsibility they carry every day.
  • Especially if you have an extended family, consider setting up a Facebook page or a Google Circle to update each other, or use email to keep everyone up to date on how the family is doing and what is needed. Consider using Skype or similar free services to allow you to talk practically face-to-face on a regular basis.


Participate in these Educational Web Calls

New Gene? Ubiquilin-2
November 22 (Tuesday) 1:00 p.m. PT (4:00 p.m. ET)

Speaker: Teepu Siddique M.D., Northwestern University Feinberg School of Medicine

Learn more about the identification of a new gene linked to familial ALS, Ubiquilin-2, involved in the processing of accumulated proteins.

Call-in toll-free number (US/Canada): 877-668-4490
Meeting Number: 820 912 160
Meeting Password: National1


Celebrating National Family Caregivers’ Month

During National Family Caregivers’ Month, The ALS Association’s national office will host a series of webinars designed specifically with the needs of caregivers in mind.   A wide range of topics will be presented to help inform, support, and encourage caregivers.  Choose to attend one or to attend them all!

11/21 Monday, 11:00 AM Pacific Time*
AT to improve Caregiver Quality of Life

An overview of tools, equipment and technology that improve the quality of life for those living with ALS and their caregivers.
Speaker: Alisa Brownlee, ATP, Greater Philadelphia Chapter
Call-in toll-free number (US/Canada): 866-699-3239
Meeting Number: 826 159 304
Meeting Password: November2011

11/29 Tuesday, 11:00 AM Pacific Time*
Nutrition in ALS - Calories, hydration and tube feedings

This presentation will cover what portion sizes in an oral diet would be needed to meet nutritional requirements as well as what volume of fluids/water are required to meet basic hydration needs.  Different types of tube feeding products and oral supplements will be discussed that help meet these needs.  Tube feeding administration methods will be explained and a few case studies presented to encourage questions and help the audience troubleshoot common diet/tube feeding issues such as intolerance and optimal time for tube placement.
Speaker: Lorraine Danowski, MSRD, Dietetic Internship Coordinator at Stony Brook Long Island, NY
Call-in toll-free number (US/Canada): 877-668-4490
Meeting Number: 827 750 683
Meeting Password: Nfcm2011
11/30 Wednesday, 9:00 AM Pacific Time*
Promoting Quality of Life - The Benefits of Hospice for The ALS Patient and Their Family

The session will describe how hospice care and services, specially tailored to meet the needs of ALS patients, can significantly impact in a positive way the symptoms and psycho-social challenges faced by the patient and their families.  We will explore the resources available for this critical time in the progression of the disease, and outline the ways in which hospice can support the entire family.

Speaker: Peggy Pettit, VITAS-Innovative Hospice Care

Call-in toll-free number (US/Canada): 877-668-4490
Meeting Number: 821 891 631
Meeting Password: Nfcm2011

*All webinars are listed in Pacific Standard Time.  Please be sure to adjust the time for your time zone.



exchange_1111_06Saluting Our Military Veterans with ALS

Military Veterans are approximately twice as likely to die from ALS as those in the general population.  For Veteran's Day, The ALS Association has created a Wall of Honor on our website to help put a face on this disease and pay tribute to our military men and women with ALS. Visit the wall at

Are you a veteran living with ALS or the family or friend of a veteran who has been lost to the disease? If so, we encourage you to share the photos and stories of the heroes who have served our nation.


The ALS Registry Turns 1 Year Old!

On October 19, 2010 the ALS Registry launched, allowing every person living with ALS in the United States to self-enroll in the single largest ALS research project ever created and is designed to identify ALS cases throughout the entire United States. The Registry is still collecting critical information about the disease that will improve care for people with ALS so researchers can learn what causes the disease, how it can be treated and even prevented. If you or a loved one has ALS and have not registered, please consider enrolling today.  Visit our website for more information and instructions at



Fighting Lou Gehrig's Disease One March at a Time

Marching_smThe ALS Association is proud to partner with Ocean 2 Ocean Productions to bring the Marching for ALS campaign to university marching bands throughout the country.

For the third year, Marching for ALS, a subsidiary of Marching for Hope, has taken university marching bands by storm in order to spread awareness and raise funds for the fight against Lou Gehrig’s Disease.  Each school will choose a home game where the marching band will dedicate their halftime performance to those who have fought and continue to battle this disease.

“By collaborating with university marching bands, The ALS Association has the unique opportunity to raise ALS awareness among university students and fans,” said ALS Association President and CEO Jane Gilbert.   “We appreciate the support from everyone involved in this campaign and welcome their support in the fight against Lou Gehrig’s Disease.”

This year, 13 schools have signed up for this campaign, which runs through December 3, 2011. For a full list of schools and marching dates, please visit



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