ALS From Both Sides, Care of an ALS Patient By Diane Huberty, Retired RN, Certified Neuro Nurse and ALS Patient

ALS From Both Sides

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 physicians, nurses, ALS patients and caregivers should anticipate, recognize, and minimize in order to assure a good quality of life even if that life is short.

The development of medications to slow progression continues even though the effects of those medications is difficult to assess because ALS progression is so variable. Continued improvements in supportive care (nutrition, respiratory support etc.) are ongoing. Computer aided communication and environmental control equipment to greatly improve the quality of life for ALS patients who opt for ventilation. As a result more of us will take that option and live for many more years.

The other focus of tis website is dealing with the practical, day to day problems that ALS presents. As someone with ALS, I have found that medical problems are only part of the battle. Dealing with the practical issues of adaptation to increasing disability is as much, or even more, a part of quality of life than medical problems. In my years of slow progression I have gone through (and continue to go through) the many stages of ALS. Slow progression has meant that I have spent years instead of months in each stage and have had time to problem solve some of the hassles of daily life. I hope that some of these ideas will turn what was a lot of trial and error for me into a fix that even those with rapid progression can use.

ALS from Both Sides is available to download and print as a .PDF file!
The .PDF files of ALS from Both Sides are border formatted to allow double sided printing if desired (duplex version) or single pages (single version). Family, friends, and ALS caregivers who do not use the Internet can now have a copy of the entire website. You can also print just a section at a time if you prefer. Feel free to pass on copies to anyone that could benefit, but do not use any part on another website or publication without contacting me for permission first.
Diane Huberty, March, 2020
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