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Have you ever wondered how you would react if a disaster strikes? How would you cope with an event or illness that took you by surprise and changed your life—not necessarily for the better?
In my years of practicing neurology, I have seen the best and the worst in people brought out by such a test. I know of a woman whose husband of 25 years left her without any means of support when she became severely ill due to multiple sclerosis. The caregiver role was just not what he bargained for. Fortunately her children stepped up and helped her to get through a devastating exacerbation that left her nearly paralyzed in both legs. They literally got her back on her feet.
I also know a woman whose husband suffered through four strokes that left him extremely weak and unable to walk. He had difficulty doing things like feeding himself and brushing his teeth, and eventually they lost their house because of mounting medical bills and his missing income. She moved them to an apartment close to her job and arranged with her employer to be able to go home every day for lunch. This couple copes by finding ways to adjust rather than lamenting for things as they once were.
Then there is the child with brain cancer who is the very model of courage, strength, and grace in the presence of treatments that cause nausea, mouth sores, and hair loss—knowing that those treatments won't provide a cure, only a bit more time.
A neurological diagnosis can lead to a tremendous loss both for the patient and the people who care about her—loss of physical or mental abilities, livelihood, or autonomy. It is not hard to imagine why people in this situation experience the same stages of grief we go through when someone close to us dies. The psychiatrist Elizabeth Kubler-Ross, M.D., identified five stages of grief:
▸ Denial (this isn't happening)
▸ Anger (why is this happening)
▸ Bargaining (I'll do anything to make this go away)
▸ Depression (I'll just give up)
▸ Acceptance (I'll do what I need to do to live with this the best way I can)
It can be even harder when depression goes hand in hand with a neurological disorder. In this issue we learn that the rate of depression is between three to five times higher in people with certain neurological conditions than in the general population—something that is NOT seen in people with other chronic illnesses like heart disease or cancer. It is so important to recognize and treat depression; if left untreated, a person could be blocked from getting the help he needs to have the best quality of life possible.
In this issue we also hear from several people with neurological illnesses about how they cope. Catherine G. Wolf, a frequent contributor to Neurology Now and a person who has had amyotrophic lateral sclerosis since 1997, tells us how she uses technology to make her life better. Journalist and producer Richard Cohen tells us about how he moved from denial to acceptance of his diagnosis of multiple sclerosis. Although his story is called, “Living in Denial,” Cohen tells us in no uncertain terms that it is only by accepting our conditions that we can “look beyond our illnesses and see what else we can build in our lives.”
Maybe you have been put to the test by something that happened to you or someone you care about. Drop us a line, or consider writing an essay for our “Speak Up” department. Hearing your story may help someone else do what they need to do to live with their illness in the best way they can.
Robin L. Brey, M.D.