Archive for the ‘Healthy bones Osteoporosis Rheumatic’ Category

LIVING WITH SPINAL CORD INJURY: BECOMING AN ADVOCATE FOR YOURSELF

Friday, July 22nd, 2011
Although we sometimes wish that other people could read our minds and go to bat for us, in reality no one knows our needs and desires better than we do. While you are in the rehabilitation center, the professionals who work there serve as your advocates. When you leave, you have to become your own advocate.
What does “advocating” mean? Basically it means standing up for yourself and communicating the importance of your needs to those who can meet them or who can help you achieve your goals. To advocate effectively, you must believe yourself worthy of having your needs met.
Different people have different levels of comfort in speaking for themselves, and we’re generally more comfortable doing so in some situations than in others. An extrovert may find communicating easy, while an introvert might find it intimidating. Comfort levels are also affected by the amount of stress in our lives.
Gwen, an attorney, was usually quite competent in dealing with situations that involved gaining entry using her wheelchair. One Saturday night she went to the movies with a couple of friends. Arriving at the theater, they waited in line in the freezing cold to buy tickets. They eventually got their tickets and entered the theater, only to be met by the manager, who told them that Gwen wouldn’t be able to see the movie because it was on the second level and the theater had no elevator. Gwen, who’d had a stressful week litigating a case and caring for her aging mother, burst into tears. This was the proverbial “straw that broke the camel’s back,” she thought.
In another time and place, Gwen would have handled the situation with her usual professional demeanor, imparting information with a sense of humor. Her experience at the movie theater illustrates how emotions change, depending on what is happening in our lives. When advocating for yourself, give yourself some slack. Don’t expect to be “perfect” in being educational and understanding in every situation.
When you have the emotional resources, what sorts of skills do you need to be your own advocate? Most people agree that an advocacy tool kit should contain the following elements:
1.   Identify the problem
2.   Identify the desired solution
3.   Identify various ways to reach the solution
Each step requires clear thinking, the ability to articulate, and the willingness to hear other people’s ideas, appreciate them, and incorporate compromises if necessary.
How do you learn to advocate for yourself? First, be informed; know what you are talking about.
Second, learn assertiveness and advocacy skills. Programs that teach advocacy skills are most likely sponsored by your local Office for Persons with Disabilities or Commission for Women. You can also learn these skills through mainstream organizations that teach public speaking.
Some rehabilitation programs provide social skills training, and many community colleges and mental health facilities offer assertiveness training classes for the general public. On a very practical level, you can learn from watching how other people with spinal cord injury gain the attention they need to achieve their goals.
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SPINAL CORD INJURY: HOW CAN MY FAMILY HELP DURING THE ACUTE HOSPITAL PHASE?

Saturday, April 30th, 2011
In the initial stages of your hospitalization, how can you and your family take some control of the situation? Here are some suggestions for how family members can assume responsibility for supporting you (and each other) and for seeing that you get the best care.
1.   Form your own family team, with each member responsible for information and input about a certain aspect of your care. For instance, one member could be with you each morning to talk with the doctors on their rounds. Another member could talk with rehabilitation centers about the second stage of your recovery, to get the information necessary for making the best decision.
2.   Ask questions until you really understand procedures, medications, and any side effects of treatments and medications. This is how you’ll become an informed consumer and a partner in the decision-making for your care.
3.   Ask family members to accompany you to therapies to observe, assist, and give you feedback. They can reinforce your progress and will also be better prepared to help you with exercises when you return home.
4. Advocate for your own care. If your voice is not heard, ask family members to speak up for you.
5. Ask family members to listen to you and understand your observations and needs. And listen to your family. This will keep you attuned to one another’s emotional states so that you can support each other when needed.
6.   If you have questions or concerns that are not being answered or addressed to your satisfaction, request a meeting with the physician. In a rehabilitation hospital or in an acute care setting that uses a team approach to patient care, you can request a Case Conference. This is a meeting that pulls together all the medical personnel involved in your care. You and your family will be included in the conference so that you can hear the different strategies being integrated to form the core of your care. Carefully consider every aspect of your care or prognosis so that you can ask just the right questions.
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