Skip to Main Content
Walk To Defeat ALS

Search Our Site

Talk to Us

We're just a phone call or mouse click away. Call us toll free at (800) 782-4747 or email us.

ALS Registry

August 2011

August 2011

This Month In . . .

 

Exchange_header_patient_sm

exchange_header_research_sm

Exchange_header_news_sm

Exchange_header_patient

 

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: I’ve had ALS for a couple of years and I find I often seem to over-react to something that is either funny or sad. I feel much more emotional than I used to be, and as a tall, large man I find people look at me like I’m crazy. I’ve heard there’s a prescription drug to help. What do you think I can or should do?

A: You are not alone. What you’re experiencing is not uncommon for people with ALS. It also can occur in people with multiple sclerosis, Parkinson’s disease, stroke, traumatic brain injury, and other neurologic conditions.

Before you developed ALS, you naturally and unconsciously were able to link your reaction to the situation at hand. If a joke was just mildly amusing, you may have smiled or giggled rather than laughing loudly or uproariously. If someone referred to a sad situation, you would have frowned or shown concern rather than crying. You may find that you laugh or cry without an obvious stimulus.  Your reactions can indeed be confusing to others and embarrassing as a result.

The term for this is pseudobulbar affect (or PBA). It happens when certain neurological diseases or injuries damage the area of the brain responsible for controlling what we typically consider to be the normal expression of emotion. The damage can affect brain signaling, short circuiting the normal system and causing episodes of involuntary crying or laughing.

Nuedexta,™ the first and only FDA-approved treatment, has been show to significantly reduce the number of PBA episodes for some people. In fact, in a study, half of the people taking the prescription drug had no PBA episodes after they had taken the drug for 10 to 12 weeks. Some experienced a reduction in their daily number of episodes after just a week.

The drug combines dextromethorphan hydrobromide and quinidine sulfate. If your physician prescribes it for you, you will probably be told to take one capsule each morning for the first week, and then increase your dose to two capsules a day, about 12 hours apart. You can take the pills with or without food.

Nuedexta can interact with other medications, so be sure your physician is aware of other medications you’re taking. Some people with heart problems will be asked to have a “baseline” EKG taken before starting Nuedexta. To learn more about Nuedexta, visit neudexta.com

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. 

TOP

 

Prescription for Safety:
Medical Bracelets, New I.D. Systems

When an emergency strikes, it’s often difficult for first responders or healthcare staff to assess your situation – what could be happening to you – if exchange_0811_01there isn’t someone with you who can fully explain everything from your allergies to your health conditions. For people with ALS, key information is particularly critical because signs and symptoms, such as movement or communication limitations, could easily be misconstrued and lead to a misdiagnosis.

Bracelets and other medical-identification systems can quickly provide your complete health history and direct staff to a secure website or a toll-free number for a full range of information they’d need to know.

While you want the bracelets and information systems to be easily noticed, they no longer have to look clunky or unattractive. And if they’re linked to a medical-information service or include a well-marked USB flash drive, they can include a wide range of information, including all diseases or conditions, blood type, allergies, disabilities and family and friends to contact.

exchange_0811_02

With Medic-Alert, a person’s member number and a toll-free number gives responders 24/7 access to information (about $40 a year). MedInfoChip sells software programs (about $50) to allow people to put their own health records on their computer and load them to a USB device. American Medical ID sells a flash drive that looks like a dog-tag necklace that can be engraved and loaded with your medical records (about $45).

If you don’t want to wear jewelry or carry a flash drive, you can upload your medical information to a secure website tied to a personal identification number. You’ll get a wallet card, key fob and stickers that show the I.D. number and the website address. The program is available from the American Ambulance Association (for $10 a year).

For more information:

 

TOP


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:  I used to be incredibly active at work, in the community, and socially. I find it hard to be very involved now, and I’m frequently bored. How do you deal with that effectively?

A. You can still be active but you must approach it differently with less focus on the physical demands of your activities and more emphasis on the mental and planning aspects.

Consider your strengths and what kinds of things you want to involved with. You will find that as ALS advances, activities will gradually take longer to complete. Here are some questions to consider. Can you be involved through conference calls? Can you participate through Facebook? How can your computer work for you? Can you schedule meetings at home as opposed to somewhere else? Is it easier to communicate and coordinate by phone, email, or instant messaging?

An example from my own experience may be helpful when considering how to stay involved. A few years ago I served on the board of a local nursing chapter with more than 600 members. I was responsible for member involvement. I maintained the chapter’s electronic mailing list, wrote and sent the monthly eNewsletter, sent welcome emails to new members, and handled reminder emails for lapsed dues. I did all this being completely paralyzed with a ventilator and no speaking ability. I worked entirety at home with my computer and communicated with the chapter’s board of directors through email. Anything is possible. It just requires thinking beyond the normal realm.

TOP

 

Participate in these Educational Web Calls

Federal Benefits for Veterans and Families Living with ALS

August 18 (Thursday), 10:00-11:30 a.m. PDT (1:00-2:30 p.m. EDT)

Speaker: Bo Rollins, President, Rollins Professional Services, LLC

Learn important information about benefits for veterans and/or families and survivors who are dealing with the impact of ALS on their lives. This webinar will also be valuable to those who care for veterans with ALS as well as Patient Care Coordinators. We will discuss briefly all VA benefits available to veterans and to survivors of veterans who have passed away from ALS. Ample time will be provided for questions and we will be available to provide follow- up support to those who need it at a later time.

Call-in toll-free number (US/Canada): 866-699-3239
Meeting Number: 822 281 625
Meeting Password: TopicCall2011
https://alsa.webex.com/alsa/j.php?ED=152228942&UID=1168052682&PW=NMmFjNmE1ZDli&RT=MiM0

---------------------

Assistive Technology Educational Series

exchange_081104Social Media and ALS: How to Network

August 22 (Thursday) at 11:00 a.m. PDT (2:00 p.m. EDT)
Guest Speaker: Alisa Brownlee, ATP, The ALS Association, Greater Philadelphia Chapter

Call-in toll-free number (US/Canada): 866.699.3239
Meeting Number: 821 922 429
Meeting Password: TopicCall2011
https://alsa.webex.com/alsa/j.php?ED=151277387&UID=1165243417&PW=NOWNhMDk3MTE1&RT=MiM0

--------------------------

Research Update

exchange_0811_03

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.”

TOP

Newsletter_header_research

ALS Association New Research Grants Announced

The ALS Association’s TREAT ALS (Translational Research Advancing Therapies for ALS) Portfolio is a research endeavor enabling important global research to progress from the laboratory to the bedside. The focus of the program is to support novel ideas, build tools, partner with academia and industry to identify new potential therapies and support the infrastructure for clinical trials with the goal to find meaningful treatments for ALS and a cure.

The ALS Association is pleased to announce twenty new grants in laboratories throughout the United States, United Kingdom, Belgium, Italy and Spain. The new awards include four innovative discovery awards generously supported by The Alan Phillips Discovery Grant Award Fund and five Milton Safenowitz Postdoctoral Fellowship Awards. These new grants focus on understanding how the new genes TDP43 and FUS contribute to disease, development of a novel model system to understand neuronal activity, immune mechanisms in ALS and development of novel Riluzole (Rilutek) derivatives with improved activity.

Click here to read the full article.


Neuraltus Pharmaceutical NP001 Trial
Accepting Qualified Participants

NP001, a novel, proprietary approach that regulates macrophage activation, targets diseases including Amyotrophic Lateral Sclerosis (ALS), Parkinson’s disease, Alzheimer’s disease and multiple sclerosis. NP001 is designed to transform select immune cells (macrophages) from a neurotoxic state to a neuroprotective state, normalizing the cellular environment of critical nerve cells.

Neuraltus’ focus on macrophages is based on the recent understanding of the fundamental role of inflammation and macrophages in neurological diseases. Runaway inflammation has been associated with many of the symptoms seen in severe neurological diseases and is believed to play a major role in the progression of these diseases. Treating inflammation of the central nervous system (neuroinflammation) provides a robust platform for addressing upstream disease mechanisms associated with the most severe neurodegenerative diseases.

Click here to read the full article.

TOP 

 Exchange_hdr_news 

Go to Bat for ALS

Go To BatThe 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!


Fighting ALS Can Suit You to a Tee

 

Hope Shirt - FrontThe ALS Association has partnered with Muze - the renowned lifestyle clothing brand - to bring you the "Hope is a Good Thing" T-shirt - with a portion of the proceeds going to support our mission to defeat ALS through care giving, research and public policy! This shirt was designed with input from more than 400 people from the ALS community.

Order your limited edition ALS T-shirt today - then submit a photo of yourself wearing it to help raise ALS awareness!

TOP

 

 

 

 

 

 

The ALS Association - 1275 K Street NW - Suite 250 - Washington, DC 20005
All content and works posted on this website are owned and copyrighted by The ALS Association. ©2010

Lou Gehrig® used with permission of the Rip Van Winkle Foundation / www.LouGehrig.com

Powered by Convio
nonprofit software