March 2012
| Inside this Month's Exchange eNewsletter . . . |
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 ALS and use a feeding tube. I’d like to make my own healthy food rather than use canned. What can I make that will fit into the tube? Can I use vegetarian or vegan food? Thanks for your help. Adrianne Babbitt, Jupiter, Florida A: It’s not uncommon for people with ALS to want to consume pureed homemade, vegetarian, vegan, or organic food through their feeding tube. In fact, I can remember one patient who never used any commercially prepared canned food at all. She and her husband had their own garden and saw a real value in incorporating their daily harvest into their tube feeding. Using a commercial blender to homogenize the food, they had no problems at all. Making your own tube feeding formula can be less expensive than commercial formulas. People often say they like the smell of a home-prepared meal more than canned formula. It also can be comforting to know exactly what goes into the food you’re eating. However, preparing your own feedings takes more time than popping open a can, and the effort can become tiresome for some people if done for all or most meals. Homemade tube feedings can include foods found in your grocery store. Ingredients may include carrots, green beans, vegetable oil, applesauce and other nutritious foods. Some recipes use baby food to cut the time spent blending. When preparing your own food for a feeding tube, be sure to homogenize it well so that the food doesn’t clog the tube. It’s important to avoid meat and fish products, high fat vitamin supplements (like Vitamin E, Omega 3, or other oily or fatty materials). If you like, you can pulverize nuts and add them to the feeding, providing fiber and a variety of nutrients. Be sure to flush the tube thoroughly after the feeding. To blend the food, you can choose from a variety of devices, from a food processor or juicer appliance to a hand-held blender for smaller servings. Some of these devices might leave behind the very tough fiber from plant materials but soluble fiber could be added in the form of products such as Metamucil®. I know some patients want to enjoy a “cocktail hour” so it’s fine to put wine, beer and other alcoholic beverages – slightly diluted – into your feeding tube. You’ll enjoy the benefits of libation and may find yourself more relaxed and sociable. When traveling, if you want to avoid the challenge of preparing your own feeding, you can opt for plant-based protein formulations that appear in some products. Or you can also use Carnation Instant Breakfast with whole milk, if you like. Be sure to discuss your homemade diet with your physician and, ideally, with a nutritionist working in an ALS Association Certified Center or clinic. It’s important to be sure you’re getting a balanced diet with adequate amounts of key nutrients. I’d like to hear from readers about what approaches have worked for you in customizing and enhancing your tube feedings. This is the “Wikipedia” approach to tapping into the collective wisdom of the ALS patient community. Please email theexchange@alsa-national.org and if we get enough good ideas, we can put them in next month’s column. And keep your questions coming, too! 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 or 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 wondering if you have a “Top 10” list of the equipment that is most useful to you in making it easier to live a fuller life with ALS? A: I have been living with ALS for 16 years. Over that time I’ve found several items that are indispensable to making my life more comfortable, less complicated and less stressful. Obviously, no equipment can possibly take the place of the unconditional love and support of at least one person – such as a spouse, a friend or a family member. But having the right tools surely makes a critical difference. 1. Electric recliner chair and special cushion Sitting in a wheelchair all day can never be as comfortable as sitting in a plush padded recliner. Plus a “Roho cushion” on the seat means total comfort. The electric controls give you the ability to adjust your position easily and raise the height to allow your caregiver to assist you more easily. Find the cushions at http://www.rohocushions.net/ . 2. Combination toilet/shower chair I went through many versions until I found the perfect chair. Part of the problem was I wasn’t looking far enough ahead, anticipating my future needs. This chair has a padded seat, sturdy arm supports, high padded back, head support, and removable feet rests. Here is a picture and specs: http://activeaid.com/products/adult-positioning/model-496/ 3. Roll-in shower Taking a shower is an everyday activity people take for granted until something like ALS challenges your ability to enjoy this simple pleasure. A roll-in shower is definitely worth the investment. 4. Specialty mattress Use of a dynamic airflow mattress has many tangible benefits: comfort, uninterrupted sleep and prevention of pressure sores. Along with a decent mattress, a standard hospital bed frame has many advantages, allowing you to raise the head of the bed, bend the knees and elevate the bed height to assist caregivers. 5. Computer A computer with a voice synthesizer is indispensable to stay fully connected. When I use my computer I am completely independent. It is adapted so a sensor recognizes movement in my cheek; through this very slight movement I have the computer capability of any able bodied person. 6. Worktable Wherever you spend most of your day, you should have a practical work surface easily available, either on your wheelchair, an accessible standard desk or, in my case, a homemade desk (which my dad made for me). It fits over my recliner chair. 7. Resource notebook This is a half-inch binder filled with helpful information for my caregivers. It includes a list of medical, family and caregiver phone numbers, my typical daily routine, my supply list and how to re-order supplies, my medications and when to give them, the steps necessary to accomplish a safe transfer (moving me from one spot to another), the steps involved in inserting a new feeding tube, and other useful tips to ensure my care is seamless. 8. Transparent letter board If we can’t speak, we can’t write notes and we aren’t always our computer, the perfect solution to communicate is a simple low tech, low cost transparent letter board. The 16”x18” board is made of flexible plastic and is used by being held by your caregiver directly between the two of you while you look at letters with your eyes. It is available here:http://www.cini.org/ . 9. Heating blanket /space heater I’m always cold because I no longer have the muscle mass to generate and maintain heat. My solution is to use an electric (heating) blanket on my bed at night and a space heater in my bathroom where I change clothes and shower. When I start my day warm, I feel better all day long. 10. Book stand I actually have two different types. One is for newspapers and is made of wood (also made by my dad). The other is for hardback books and magazines. It uses clips. If you do a lot of reading as I do, a practical book stand can complement your e-book collection nicely.
On the Move: Getting Around, Home or AwayWhether you want to take a trip into town for errands or you’re traveling away from home, getting around with ease can be especially difficult if you have mobility challenges. Happily, there are a variety of services available to help make it a little easier to get around, whether you’re home or away.
If you don’t need a specially-enabled vehicle, there’s a new service available in Boston, Chicago, New York, San Francisco, Seattle, Washington D.C., Toronto and Paris, called Uber. You can get a sleek black sedan car literally within minutes, without having to make a phone call. You sign up ahead of time at the Uber website, and then request a sedan via an iPhone or Android app, or by sending a text message. The fare is charged to your credit card, with tip included, so there’s no exchange of money when you get out of the car. Using the phone app, you can track the sedan as it approaches your location to pick you up. You can find out more at https://www.uber.com. Especially for those who need an alternative to a private car but don’t require an accessible van, there is the nonprofit Independent Transportation Network of America (ITN). Designed to provide community-based rides for seniors, it matches people to drivers for a small fee ($11.50 for a five mile ride). While the cars do not have wheelchair lifts, they accommodate people who can transfer from a wheelchair to a vehicle, and have a folding wheelchair. Founder Katherine Freund describes the service as “arm through arm and door to door service.” There are about 25 ITN affiliates across the U.S. and a “Road Scholarship Program” that helps low income seniors with their rides. Riders can order a car by 5 p.m. the day before and will be picked up by a driver who will come to the door and help with luggage or packages. After joining for an annual membership fee of about $50 a year, riders get a personal transportation account and don’t have pay the driver directly or tip. For more information, visit http://itnamerica.org . By Barbara Bronson Gray, RN, MN
Participate in these Educational Web Calls For MarchAutophagy: a Therapeutic Target for ALS March 14 (Wednesday) at 1 pm, PDT (4 pm EDT)
The Gladstone Institute at the University of California, San Diego Learn how an ALS-funded study is helping to understand ALS and develop therapies. Autophagy is a pathway in healthy cells that removes damaged or worn out proteins and organelles, including mitochondria and aggregated protein. Abnormal protein aggregation is found in several neurodegenerative diseases including ALS. The investigators recently discovered a series of small molecules, some of which are FDA approved drugs, which stimulate autophagy in neurons, including human neurons made from induced pluripotent stem cells from healthy volunteers. These were tested in Huntington’s disease. Call-in toll-free number (US/Canada): 1-877-668-4490 Meeting Number: 674 225 390 https://alsa.webex.com/alsa/j.php?ED=14711898&UID=110482618&PW=NMWQxNGIzZjU3&RT=MiM3 For information about future calls, please visit http://www.alsa.org/, click on “Our Research,” and then on “Research Webinars.”
Electronic Aids for Daily Living March 19 (Monday) at 11:00 am PDT (2 pm EDT) Speaker: Alisa Brownlee, ATP, The ALS Association, Greater Philadelphia Chapter Call-in toll-free number (US/Canada): 877-668-4490 Meeting Number: 671 474 683 https://alsa.webex.com/alsa/j.php?ED=15111988&UID=111868053&PW=NMzU0Y2M2YmFk&RT=MiM0
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It’s smart to plan ahead and find out the details about what’s available before you leave home. If you’re flying or taking a train, you can phone taxi or limousine companies before you go to request a wheelchair-enabled van when you get to your destination. In England, there’s a special needs website, 
Speaker: Steven Finkbeiner, MD, PhD
