Thank you to Larrie & Diane Grenz! - The ALS Association Greater ...

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Ask the Doc Q & A with Edward Kasarskis, MD, PhD Page 4 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. 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 Dr. Kasarskis 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. For more information on local services and programs for ALS patients and Caregivers please call 916-979-9265 or visit www.alssac.org Nancy Wakefield: Patient Care Manager, Becki Moeller, Patient Care Coordinator
Care Services Page 5 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. 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.
Page 1 and 2: Thank you to Larrie & Diane Grenz!
Page 3: Lend a Hand Page 3 VOLUNTEERS WANTE
Page 7 and 8: Understanding Medi-Care Page 7 Atte
Page 9 and 10: Advocacy and Public Policy PAGE 9 A
Page 11 and 12: Research PAGE 11 Research Indicates
Page 13 and 14: A Special Thank You to our 2011 Wal
Page 15 and 16: Jim Hall Terry Hall Carol Hall Bria

Thank you to Larrie & Diane Grenz! - The ALS Association Greater ...

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