Archive for June, 2011

Although information about your disability may be overwhelming at first, you need to learn as much as possible about your body’s new demands and functions. Ask your doctor or nurse for information about your injury and about aspects of your function that trouble you the most – whether sexuality, bowel and bladder control, or use of a wheelchair. Concentrate on developing new skills. Take an active role in setting daily, weekly, or long-term goals. By discussing your goals with the therapists, you can more fully participate in your rehabilitation and more quickly master the skills necessary to alleviate your anxieties.
Working closely with your nurses and therapists in developing a predictable routine is important. It may be helpful to involve a spouse or family member in this process. Ask the staff to give you realistic expectations about the availability of care. Waiting for things to happen is easier when you know you’ll have to wait and don’t experience constant anticipation and frustration.
Through communication about your needs, you and your caregivers (or family members) may be able to reach workable compromises: using the telephone at a prearranged time, changing your therapy schedule to accommodate care needs or family visits, and so forth. Expressing your wishes about seemingly small, personal preferences can also be important in reestablishing a sense of control. Don’t hesitate to ask for your favorite soap, cosmetics, clothes, plants, or pictures to be brought to the hospital or rehabilitation facility. Make sure you have a reliable method for controlling the television, lights, and call-bell in your room, or arranging for regular assistance to do so.
Finally, try to pace your day so that you get some respite from the demands of your disability. Some people do this by becoming a couch potato at the end of the day – watching television, reading, or doing crosswords. Some build in a short period each day when someone else attends to their needs so that they can rest from the effort of doing everything for themselves. Another idea is to arrange for a psychological break from the hospital atmosphere, such as getting a special meal brought in, having a party in your room, or getting some quiet time with a spouse. These activities can break the single-minded focus on recovery, provide relaxation and rest, and remind you of the rewards of life beyond the hospital – thus giving meaning and purpose to your daily struggles with rehabilitation.
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Sometimes the seizure activity, while lateralized to one side of the brain, is not sufficiently localized for removal of only a small focal area. More extensive surgery may be both necessary and helpful. Sometimes we have to take out extensive amounts of the brain or even one half of the brain, hemispherectomy.
Yes, it is possible to remove one half of the brain and still have a child of normal intelligence whose only disabilities are difficulty using the arm on the opposite side and a hemianopsia, meaning that he can’t see off to that side of his body. Such children are able to go to regular schools. When older, they can hold full-time jobs and live virtually normal, independent lives. Hemispherectomy is rarely performed, only perhaps ten to twenty times a year in this country. It is mentioned here so that you will know that it does exist and that in very carefully selected situations—when the child has severe damage to only one side of the brain, and already has damage to motor function on the other side of the body, and experiences uncontrollable seizures—a heroic operation such as this can be done. It can be life-saving and allow an otherwise profoundly handicapped child to lead a far more normal life, one free of seizures.
Rarely, or so it seems, a child is born with major abnormalities on only one side of the brain or sustains damage or inflammation (Rasmussen’s syndrome  to just one hemisphere of the brain. If your child’s seizures are consistently coming from one side of the brain and do not respond to medication, it may be worth discussing the possibility of hemispherectomy with your physician.
Hemispherectomy is not a procedure for everyone, not even for everyone with damage to one side of the brain. It is major surgery that should only be done in a small number of epilepsy centers with experience with the procedure. The outcome for the child depends primarily on the normality of the remaining hemisphere. Indeed, it seems from these children that no brain tissue on one side is preferable to the constant electrical interference coming from abnormal brain tissue. It appears that this constant electrical interference impairs the function of the good side. Beth is a good example.
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Bret Michaels, the lead singer of the heavy-metal group Poison, manages to combine the routine of blood tests and insulin shots with a demanding job and an unusual life-style. Michaels was first diagnosed at the age of six, learned to give himself injections at ten, and has been part of a rock band since high school. It’s sometimes difficult to mesh eight blood tests and three insulin injections a day with a life of concerts and partying, with constant travel and irregular hours.
Michaels admits that he hasn’t always kept to a strict life-style, and there have been some problems along the way. He passed out from an insulin reaction in the middle of a concert one night, in front of 20,000 people at Madison Square Garden. The group had been celebrating the success of its first album, and Michaels was suffering from a hangover and unable to eat after taking his insulin shot. Drinking (which he knows he shouldn’t do) makes it harder to control his blood sugar level, and overindulgence has put him in the hospital twice.
On the road in Maine, the rock star discovered a different kind of hazard. A hotel maid pricked her finger on one of his discarded needles. She called the police, who arrested Michaels as a suspected heroin addict. His tour manager brought Michaels’ insulin supplies and blood-testing kit over to the station, and he was released just in time to make his concert appearance. Michaels does work out regularly, lifting weights and mountain-biking, and he is careful about his diet. But “I don’t let diabetes run my life,” he says, and adds, “Most diabetics could never live my erratic life-style.”
Some occupations’, such as piloting an airplane or driving a bus, may not be open to people with diabetes, especially those who are taking insulin. These restrictions are imposed for safety reasons. Passing out from an insulin reaction at a rock concert may be embarrassing, but in some jobs it would be a disaster. Many people’s lives might be endangered if an airplane pilot or bus driver suddenly became unconscious on the job. But with relatively few exceptions people with diabetes are free to take up any occupation they wish.
Insurance companies used to refuse to write life insurance policies on people with diabetes. That made sense when people with the disease generally died within a few years after being diagnosed. But modern treatments have permitted most people with diabetes to live a nearly normal life, and insurance companies have changed with the times. Now life insurance policies are available for people with diabetes, although they may be charged somewhat higher premiums.
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