June 2012 - The ALS Association Greater Sacramento

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How To Be the Core Communicator About Your Health Page 4 By Barbara Bronson Gray, RN, MN If you’re like many people, you see several health providers. In addition to a general practitioner, you may also have specialists, dentists, ophthalmologists, and even an emergency room doctor or urgent care provider. Unfortunately, you can’t assume one health provider knows what the other has done or prescribed for you. So you have to be the central communicator. Unfortunately, that role requires a fairly high level of knowledge about medicine and the ability to get written information from one specialist so you can send it to another. The more complicated your problems, the more fragmented your care will be. The average Medicare patient sees two physicians and five specialists a year, (according to The Fragmentation of American Health Care: Cases and Solutions, edited by Einer Elhage). Those with a chronic illness see an average of 13 physicians a year. It's important you know that no one is picking up your medical records and automatically delivering them to the physicians in your life who should know what's happening with you. Consider yourself the person most responsible to collect written updates, copies of test results and lists of new and changed medications and get them to all your other healthcare providers. What should you do? When you get a test result, procedure or have surgery, get the summary in writing, keep a copy, and send or bring copies to all your other healthcare providers. Attach a simple note: "Wanted to keep you up to date on my health status. Please put this in my chart." If it's an important healthcare issue, be sure to bring up the data or problem at your next visit and mention that you sent a written summary for inclusion in your medical record. Keep a list of all your medications and update it any time a healthcare provider adds or deletes a drug or changes a dosage. Bring a copy of that list to your medical appointments and to the emergency room if you end up there. Keep the list with you when you travel. Don't leave your dentist or your optometrist/ophthalmologist out of the loop. They need to know the details of your general health status. It will help them diagnose and treat any issues they may identify with you. Be sure they know you have ALS, and if you have any infections, immune issues, heart problems, chronic conditions or are taking blood thinners or antibiotics, as well as other medications. If you have a test or procedure and you do not hear the results soon afterwards, do not assume the results were normal. Call the healthcare provider who ordered the test and ask the office staff to email or send you a written copy of the test summary. Keep a copy in your own "medical updates" file. If the test was indeed OK, you still should have copy for reference at a later time, if needed. If you or someone you love ends up in the hospital, your role of communicator will be even more vital. Often multiple consulting physicians -- specialists -- are called by the admitting physician to weigh in on issues and questions that develop while you're in the hospital. They don't always talk to each other or even realize who has changed or added a medication, who has ordered a test, or what results are in. The more you communicate the better. If you are being asked to go back for a test you already had or if you have questions about what is happening, don't assume someone at the "nurses' station" has it all managed. Ask questions and be sure you understand what tests you're getting and why. If you are being discharged from the hospital ask for the results of any tests or procedures you had in the hospital. These recommendations may sound a little over-whelming. But it’s usually not so hard. Just remember: Get written copies of every test, procedure and surgery, keep a copy of each for yourself (you'll be the only person in the entire healthcare system with a complete copy of your own medical record), and give copies to your healthcare providers. Ask questions when you don't understand why someone wants to order a test for you. Bring a knowledgeable person along with you to healthcare appointments, if you like.
Advice from the Trenches PAGE 6 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’ve had ALS for a couple of years now and am now facing significant mobility issues. I just realized summer is right around the corner, and so many of the things I always loved to do seem so hard now, even impossible. I realize that recreation and leisure don’t mean the same thing to me as they once did. Sometimes just going anywhere seems like more work than it’s worth. How do you deal with this? How can I look at leisure differently, with more interest, anticipation and enjoyment? A: This is probably one of the most difficult adjustments those of us with ALS must make. But it’s possible and necessary to enjoy your new life with ALS. Your idea of recreation and leisure activities may have been a round of golf, training for a marathon, a game of tennis or pickup basketball. You must now begin the transition from being an active sports participant to being involved and engaged mentally. You must change your emphasis from the physical to the mental. How do you do that? It requires a determination not to dwell on the frustration of losing an ability but rather looking ahead positively and figuring out what you can do about it. Accept the issue as you would accept a challenge to compete. Here are some ideas about how you can approach this: Invite your friends to join you in your home to watch your favorite team or sport on TV. Invite your friends to attend sporting events. All major league sports such as baseball, basketball, football, soccer and hockey have accessible venues. Wheelchair accessibility is not an issue. Play fantasy sports. This has become a very popular hobby with millions of Americans participating. Participants act as owners to build a team that competes against other fantasy owners based on statistics of individual actual professional players. Examples of fantasy sports include baseball, basketball, football, golf, hockey, auto racing, professional wrestling and surfing. Become an enthusiast for the Summer Olympics. With the Summer Olympics just around the corner (July 27 to August 12), you can plan get-togethers to cheer our athletes to victory. Another form of leisure is as close as your computer. Discover online games. Yahoo Games http://games.yahoo.com/ is one website that offers a variety of choices including board games such as chess and checkers, card games such as blackjack and euchre, puzzles and word games. There are also online Scrabble, Words with Friends, Angry Birds, and much, much more. If you would like to submit questions for a future Q & A, please send your questions to theexchange@alsanational.org. Please understand that we won’t be able to address all questions and we won’t be able to respond to individuals personally.
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June 2012 - The ALS Association Greater Sacramento

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