April 2012
| Inside this Month's Exchange eNewsletter . . . |
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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: With spring here, I’m starting to feel the onslaught of hay fever and I find I’m coughing, sneezing, groggy and fatigued, and my eyes are itchy and watery and my nose is running. It’s hard to deal with these symptoms on top of the challenges of ALS itself. What do you suggest? A: When you hear people complain about their hay fever, they often say, “I’m so stuffed up,” or “I have trouble breathing.” For people with ALS, it’s more than simply an inconvenience. If you’re already having trouble coughing up secretions and swallowing effectively, hay fever or upper respiratory allergies can make you miserable indeed. To make matters worse, experts are saying that the mild winter temperatures in many parts of the country have caused an earlier-than-usual release of tree pollen, a common trigger for hay fever. And allergists predict a longer and more intense allergy season than we usually have. ALS complicates hay fever. Depending on your situation, you may have trouble taking in the air necessary to sneeze effectively. Allergies stimulate the creation of secretions, and decreased respiratory capacity can make it difficult to cough deeply enough to clear your lungs and throat. On top of that, some allergy medications can cause drowsiness, which can complicate your breathing when you lie down. There are some things you can do to feel better:
Spring has exploded this year in central Kentucky and around the nation. You can take steps to make this allergy season more manageable. I hope you’re feeling better soon! If you would like to submit questions for a future Q & A, please send your questions to theexchange@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 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: I’m a big nature lover and have always liked exploring the outdoors. Now that I’m in a wheelchair, I find I spend way too much time inside. Do you have any suggestions about how I can get outside more and put nature back into my lifestyle? A: Spring is a good time to recommit your passion for nature and the outdoors. Start by building time into your daily weekday routines to sit outside on your deck, patio or front porch with a newspaper, book or computer. Or simply animal watch, people watch or just feel the breeze on your skin. You can also use this time to plan weekend treks when your spouse, friends or family aren’t working and are available to join you in exploring the outdoors from your new vantage point, your wheelchair. There may be local parks or walking trails to explore close to where you live. Spring is a great time to visit flower shows, botanical gardens and arboretums. Lakes that offer fishing often have wheelchair-accessible docks. Their websites can provide this information or you can call to inquire. If you live close to the ocean, strolling on the boardwalk or oceanside promenade can be very relaxing; just hearing the surf and see the gulls is lovely. State and national parks are another exciting option. Many describe their wheelchair accessibility on their websites. When I searched “state parks” in my home state of Virginia and added the search term “wheelchair accessible,” I found a myriad of wheelchair-friendly outdoor activities available including nature trails, cabins, fishing, civil war battlefield walking tours and even cavern tours, to mention a few. Your enthusiasm for the outdoors need not be dampened because you now use a wheelchair. The next step is yours – make plans, invite your friends and go! If you would like to submit questions for a future Q & A, please send your questions to theexchange@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. Good to KnowTime for Some Mood Music
It turns out that listening to the right music may just do the trick. There’s a wide range of research that has shown that music can have a dramatic, positive effect not just on your mood, but on anxiety, depression and your ability to sleep. Neuro-scientists and psychologists say it doesn’t matter whether it’s classical, country, rock, jazz, oldies, new-age or the simple repetition of ocean waves, as long as the music fits your mood and your taste. Researchers at Penn State University studied college students’ response to music as reported in their listening diaries. The research, published in Psychology and Education, showed the students had more positive emotions after listening to music. It didn’t matter if they listened while driving or during another activity, or if the music was playing while they socialized with friends. After listening, the students were more friendly, relaxed, calm, optimistic and joyful; they also were less pessimistic and sad. A new book, Your Playlist Can Change Your Life, by Joseph Cardiollo, Don Durousseau and Galina Mindlin, suggests we should choose our music carefully, selecting music to either mirror our moods or change them, depending on what we’re feeling. They say the speed of a song is a critical feature, as is the emotional connection you have with the music. Pairing the music to your mind-set is helpful. A mis-match can put you out of sorts, or make you feel anxious, the authors say. You also should carefully choose how you listen to music. Do you like sitting quietly by yourself, perhaps with ear phones or ear buds plugged into your iPod? Or do you prefer to hear the music fill the entire room through speakers, allowing you to share the moment with others or just appreciate the depth of the sound?
By Barbara Bronson Gray, RN, MN
Participate in these Educational Web CallsParticipate in This Call/Webinar: Durable Medical Equipment Needs for People with ALS April 16 (Monday) at 11:00 a.m. PDT (2:00 p.m. EDT) With Alisa Brownlee, ATP, ALS Association, Greater Philadelphia Chapter Call-in toll-free number (US/Canada): 877-668-4490 Meeting Number: 672 949 732 https://alsa.webex.com/alsa/j.php?ED=15598523&UID=113046803&PW=NNDcxZDdkYmNm&RT=MiM0 |
Need some cheering up? A little motivation? A change in outlook?
For those with mobility challenges, having a variety of favorite playlists queued up and ready to roll can make it simple to select songs based on your mood at the time. MP3 devices, iPods, iPads, laptops and computers can all make it easier to make selections while you’re comfortably seated or lying down. The iPad has a few features designed for users with impaired physical and motor skills, including a large multi-touch display that requires no physical force and a built-in zoom function to magnify the entire screen, making it easier to touch smaller links, buttons and images.
