January 2012
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Ask the Doc: Q & A with Edward Kasarskis, MD, PhDEdward 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.
Q: My mother-in-law has bulbar ALS and, now that it’s winter, we’re concerned about her contracting a respiratory virus or other infection. The problem is that she lives quite far away from the Clinic and family, and insists on going to her small town family practitioner. She recently had pneumonia and was given a shot and antibiotics. She no longer speaks, so her communication with the practitioner is fairly limited. How much can we trust the diagnosis and treatment she is getting from this practitioner? And can you clarify why the concern is so high for the risk of respiratory infections in ALS patients? A: ALS and respiratory infection: this is a difficult situation in many ways. Even without an infection, it’s hard enough with ALS to take a deep breath, cough effectively, and deal with secretions. With a cold or the flu, the challenges inherent in dealing with ALS are magnified with fatigue, thick mucus, cough, dehydration and fever adding to the difficulties and risks. Usually it takes more than just a simple antibiotic and frequently an ALS patient needs hospitalization to treat pneumonia effectively. Fortunately, it sounds like your mother-in-law's case was not too severe. So, the first and most important approach is actually an admonition: people with ALS should do everything they can to prevent a respiratory infection. In its simplest terms, that means the airway has to be kept clear and the lung expanded. To do this, you have to prevent as many infections from bacteria and viruses as possible and also head off infections from aspiration of mouth contents (saliva, food, drink) into the lungs. Keeping the lungs expanded may involve noninvasive ventilation (BiPAP) and exercises for the respiratory muscles. ALS patients should get the pneumococcal vaccine (Pneumovax) and the annual flu vaccine; keep away from friends and family who are sick; use a hand sanitizer; get as much sleep as possible; and get the nutrition necessary to maintain optimal health (through a PEG tube into the stomach, if necessary). If you smoke, quit now! There is no point in fighting two problems (ALS and lung damage from smoking). If you have asthma, make sure your treatment is tuned up to the max -- usually in consultation with a pulmonologist. People with ALS who have trouble dealing with their secretions and saliva when they’re healthy are likely to have real challenges managing if they have a respiratory illness. It’s important to talk with a neurologist about medications and treatments that can reduce drooling and the build-up of saliva in the mouth. Good management of these issues can also help reduce the risk of getting pneumonia. People with bulbar ALS are especially prone to these issues. But sometimes, despite best efforts at prevention, a respiratory infection strikes. When it does, there are a few things that should be considered during the acute phase and recovery:
Can your family practitioner handle all this? It obviously depends on the expertise of your local physician. A respiratory infection can pose significant risk and considerable discomfort for the person with ALS and may ultimately require specialized care from an ALS Center with your neurologist and pulmonologist. But your first point of contact will always be your local physician, an important member of your health care team. Keep the physician up to date on the status of your mother-in–law’s ALS so that if pneumonia strikes, he or she will be ready to initiate treatment in consultation with her ALS neurologist and other specialists. 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. Tapping Technology for Caregiver-Doctor CommunicationsThere’s much discussion these days about the need to computerize health records to ultimately cut costs and improve communication between physicians, specialists, labs, and yes, even patients. But what about caregivers?
There are also monitoring devices that track a wide range of data, such as blood pressure, respiratory rate, blood oxygen concentration levels and blood sugar levels. The data can be automatically sent to a physician or clinic or stored for review later. And, as for “mHealth” mobile phone technology in health care, there are more than 12,000 apps for iPhones and Androids (visit iphonehealthapps.net) for a wide range of tracking and monitoring purposes. Some are free and most are less than $4.99. There are also an increasing number of health monitoring programs for iPads and tablets. Advice from the Trenches
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: Everyone’s talking about “bucket lists” these days, those experiences or achievements they’d like to have before it’s too late. How should people with ALS tackle the concept of creating a “bucket list” for themselves? A: Creating a list of experiences, achievements, goals or dreams you want to accomplish in your lifetime should be no different whether or not you have ALS. However the clock does tick more loudly and the urgency seems greater when you anticipate that your years may be cut short. Examples of items on a bucket list are highly individual and can range from learning a new language or earning a degree, to taking a cruise, visiting the Egyptian pyramids or skydiving. For another perspective on making your bucket list, the 2008 film “The Bucket List” starring Jack Nicholson and Morgan Freeman is a witty yet moving portrayal of determining and then living your life’s dreams when a medical diagnosis changes life’s priorities. New TSA HelplineThe Transportation Security Administration (TSA) has launched a new helpline, “TSA Cares,” for air travelers with disabilities and medical conditions: (855) 787-2227. They offer answers to questions about screening policies, procedures and what to expect at the security checkpoint. TSA recommends that passengers call about 72 hours before traveling so that, if needed, they can coordinate checkpoint support with a TSA Customer Service Manager at the airport. Participate in these Educational Web CallsDiscovering Communication Options for People with ALS With Alisa Brownlee, ATP, ALS Association, Greater Philadelphia Chapter Learn about the range of communication options for people with ALS, including their benefits, downsides, costs and reimbursement options. Call-in toll-free number (US/Canada): 877-668-4490 ----------------------------------- Research Update
The Role of the ALS Mouse Repository Launched at Jackson Laboratories Cathleen Lutz, Ph.D. The Jackson Laboratory, in Bar Harbor, Maine, is establishing a national ALS mouse model repository which will provide a vital resource for ALS researchers and make mouse models readily available to the scientific community. The ALS Association is a key funder of the effort. The Jackson Laboratory is now home to 38 biomedical research teams with access to more than 4,000 varieties of laboratory mice bred to model the genetic complexities of ALS and a variety of other human diseases and conditions. Learn about the role of mice in critical ALS research and discover how the quality of mice models involved in science affects the quality of research outcomes. For information about how to join this call, please visit http://www.alsa.org/research/research-webinars.html.
Congress Approves ALS Funding!Great news! On December 19th, Congress approved legislation that provides an additional $6.4 million for the ALS Research Program (ALSRP) at the Department of Defense and almost $6 million more for the National ALS Registry. In a year when Congress sought to significantly cut or eliminate programs throughout the federal government, it is clear that finding the cause, treatment and cure for ALS is a priority for Congress. Save the Date! 2012 Advocacy Day & Public Policy Conference
International ALS/MND Symposium SummaryThe International Symposium has come to a close here in Sydney, Australia. Some of you have asked about the value of these meetings, and I think this is a good question. There is a very straightforward answer: Clinical and scientific researchers as well as people living with the disease and their caregivers from around the globe attend this event.This year alone, more than 800 people attended the symposium, which allows those from the ALS community to have the opportunity to meet one another and talk personally about the efforts that are taking place worldwide to find treatments and a cure for this disease. Click hereto read the full article. |
A study by the National Alliance for Caregiving and UnitedHealthcare published earlier this year showed that caregivers believe technology could be a big help to them by: saving time, better managing the logistics of caregiving, increasing a sense of productivity, reducing stress, and making the care recipient feel safer. 
Medication tracking can also be improved for caregivers through physician-linked technology. Tracking whether a patient is taking medications regularly and as prescribed is especially challenging for the long-distance caregiver. Some systems automatically remind the patient when to take medication, either through email or via an audio alert. An alert can be sent to the long-distance caregiver if a medication isn’t taken. Smart pills are being developed that can alert a caregiver when a pill is actually swallowed.
