ALS From Both Sides: Caring for an ALS Patient

As someone amazed to find herself in her 30th year of ALS and still busily, happily, and contentedly engaged in living, I have reached the point where I find myself saying "If I'd known I would live this long, I would have taken better care of myself!" As a nurse specialist in Neuroscience, I knew the long term problems of immobility and patient care issues. But with a diagnosis of ALS, I wasn't thinking long term. Well, here I am, big time long-term! I find myself looking at ALS from both sides, as a nurse, and as an ALS patient. For that reason, one focus of this site is dealing with some of the medical complications we face as a result of ALS. All too often these things are inadequately addressed because the expectation is that we will not live long enough to worry about "long term" problems. These are problems that ALS patients and caregivers should anticipate, recognize, and minimize in order to assure a good quality of life even if that life is short."

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