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 ALS patient care and adaptation to increasing disability is as much a part of the 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 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.
3 ring binder or spiral binding.
March 5, 2016 "Remodel or Move?" added.
December 12,2015 "Swallowing Problems" added. ALSDownload.pdf updated.
August 12,2015 Link added to Free Photo Fix Magic. I don't know the custom in your area, but here a Memorial Service or Viewing commonly includes photos of the deceased. If you have favorite photos that need some repair or editing, I can do it and it is free!
July 21, 2015 ALS from Both Sides is now available to download and print as a .PDF file!
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.