July 2011
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July 2011 |
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This Month In . . . |
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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: I have had a PEG tube for several months, but from time to time I have trouble with leakage around the tube where it comes out from my stomach area. Sometimes my shirt or pants get damp, or my skin gets irritated from the moisture. Do you have any advice about how to deal with this problem? What should I know about managing the PEG tube? A: There are a number of potential solutions to your problem. As you know, the PEG (percutaneous endoscopic gastrostomy) tube that is inserted through the skin directly into your stomach is an important and often essential way to give you nutritional supplements, medication, and extra fluids. For many people, it’s hard to visualize exactly how the tube goes into your stomach but basically the tube goes through the skin, muscle and fat into the stomach. The tube is held in place by two retention devices: internally in the stomach by an inflatable balloon and externally on the skin, by a plastic “washer.” So the final arrangement can be visualized as a “sandwich” held together by the two retention devices: from the inside out — the internal balloon, the stomach wall, muscle and fat, the skin, and the external washer. You can go to Google under the “images” tab and see many diagrams and examples of the PEG tube. A little oozing around the tube is normal and not usually a sign of infection. (If you’re worried about there being a potential infection, however, you should check with your physician). You can put a 4 inch square of gauze around the tube between the skin and the external washer to capture moisture that may leak out. Avoid putting ointment or a topical antibiotic on the skin, such as Neosporin. They will prevent the skin from “breathing” and lead to skin irritation. Be sure to regularly gently wash the skin around the tube with soap and water, and occasionally with hydrogen peroxide. If you find large amounts of fluid leaking several weeks or months after the tube was placed, you should check with your physician. You may need a different sized tube, or an ultrasound to ensure the tube is placed properly. But most often, any early leakage diminishes as the layers of skin, muscle and fat heal around the silicone tube to create a tract over the weeks after it was inserted. If the external washer is too loose against your skin, it can cause irritation. It’s common for the introduction of nutritional supplements through a PEG to gradually cause a desirable weight gain, but such new weight may make the initial washer placement snug. It’s easy to adjust; just slide the exterior washer up or down the tube for comfort. Most tubes need to be replaced about every six to 12 months. Look to see if the tube is cloudy, hard to keep clean, or if the tube tends to get “gunked up” or stiff. Replacement of a tube is an easy outpatient procedure and you will not need the whole endoscopy procedure again. If your tube should accidentally come out, know that it will need to be replaced promptly, and certainly within 24 hours, to prevent the passageway that has been created by the presence of the tube from closing up. Know that even with the minor hassles of having a PEG, you’re helping ensure your health and comfort by having it. Ask for help when questions arise; there are solutions! 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. Advice from the TrenchesSandra 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 don’t have much time with my physician and always feel a little rushed. What are the most important kinds of things I should be sure to ask when I see him every few months? A. When you have your medical appointments, there are two basic concepts to keep in mind to guide you. First, you are your own best advocate. Nobody acts in your best interest better than you. What that means is you must be knowledgeable about ALS in order to have an intelligent conversation with your physician. This not only keeps you in control of the management of your healthcare but also allows you to ask pertinent questions. Jot down your questions beforehand so during your visit all your concerns are addressed and not forgotten.
Second, you must be proactive. ALS symptoms are progressive and your needs will constantly change. Because your physical strength and abilities may be different from month to month, you should always be thinking ahead about what equipment will be needed to make living with ALS safer and easier. Keep in mind that some equipment may take an extended period of time to get. Applying these two concepts, here are some examples of the kinds of important issues and questions you should discuss with your physician:
Participate in these Educational Web CallsAssistive Technology Educational Series Dealing with Anger Regarding the Loss of Communication Abilities July 12 (Tuesday) at 1:00 a.m. PDT (4:00 p.m. EDT) Call-in toll-free number (US/Canada): 866.699.3239 Research Update
Understanding Relationships between Gene Variations and Patterns of ALS July 19 (Tuesday) at 1:00 p.m. (4:00 p.m. EDT) Speaker: Ammar Al-Chalabi, MD, MRC Center for Neurodegenerative research, Institute of Psychiatry, London, UK Keeping up with the rapidly changing field of ALS genetics is difficult. New genes thought to cause ALS with varying levels of scientific support are reported almost every month, and even for those that are widely regarded as being true ALS genes, the exact variations within them and how they relate to disease may be difficult to understand. One way to overcome this problem is by collecting all the scientific reports and unpublished genetic information in one place, combining information about the clinical picture with genetics to see if new patterns emerge. The ALS Online Database (ALSoD) found at http://alsod.iop.kcl.ac.uk currently records information on 74 possible ALS genes with tools for analysis and summaries of the relationships between those genes and patterns of ALS. For information about how to join this call, please visit www.alsa.org, click on “Our Research.” 
Committee Approves $6.4 Million for ALSRPRecently, the House Appropriations Committee approved $6.4 million for the ALS Research Program at the Department of Defense. Thank you to everyone who reached out to Congress to help save the program from elimination. Your outreach made a difference and helped continue funding for this vital program. In fact, the Committee did eliminate funding for several other medical research programs. While we are pleased that the Committee continued to fund the program, the funding would be a 20% reduction over the $8 million in funding currently allocated for the ALSRP. Most every medical research program at DOD that was not eliminated saw similar funding cuts of 20%, including programs for cancer, Multiple Sclerosis, HIV/AIDS, Autism and Alzheimer's. The bill now heads to the full House for a vote. The Senate also has not yet acted on their version of the DOD Appropriations bill so there are several steps remaining in the legislative process. These steps provide us with opportunities to eliminate this 20% cut, but they also provide Congress with additional opportunities to eliminate the ALSRP altogether. Clearly, our fight is not over! Thank you again for all of your efforts. Your outreach makes a difference!
Phase II Clinical Trial of CK-2017357 Opens for People with ALSCytokinetics, Incorporated announced on June 21, 2011, that the company has opened enrollment in a second Phase II clinical trial of CK-2017357 in patients with amyotrophic lateral sclerosis (ALS). CK-2017357, a fast skeletal muscle troponin activator, selectively activates the fast skeletal muscle troponin complex by increasing its sensitivity to calcium, which increases skeletal muscle force in response to neuronal input and delays the onset and reduces the degree of muscle fatigue. CK-2017357 is the lead drug candidate that has emerged from the company’s skeletal muscle contractility program. Tune in to Speak Out Against ALS
Visit www.speakoutagainstals.org to get involved!
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