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
ALS patients and caregivers should anticipate, recognize, and minimize in order to assure a good
quality of life even if that life is short. This is increasingly important because several
factors are likely to extend the life of ALS patients in years to come:
The development of medications to slow progression.
Continued improvements in supportive care (nutrition, respiratory support etc.)
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.
In addition, as someone with ALS, I have found that medical problems are only half the
battle. Dealing with the practical issues of day by day adaptation to increasing disability is
as much a part of quality of life as 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!
Family, friends, and 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.