ALS From Both Sides


ALS Information for Caregivers

I was asked to do an educational program for a local nursing home on the care of the ALS patient. My lung capacity had gotten too low to allow me to speak loudly and long enough to do this in person, so I offered to make it a written in-service. The focus is on the care issues presented by ALS patients that nursing home staff may be less familiar with so the in-service does not cover some aspects of care common in nursing homes, such as tube feedings.

Corrections or suggestions for improvement would be much appreciated, especially comments from PALs and CALs who are familiar with the educational needs of nursing home or home caregivers regarding ALS.

If you feel that the information would be of help to any caregivers, feel free to copy it and share it.

To the Staff Instructor

Feel free to use this information in any way you feel it will be helpful. Add, delete, rearrange as needed and pass it on to anyone else who might find it useful. I started to add goals and objectives but decided my nursing educator ways are probably getting a bit out-dated. I will leave it to you to add the necessary spit and polish needed to make this a "real" in-service! Please let me know if there are any clarifications needed, more specific aspects of ALS you would like covered or if there is any thing else I can do to help.

To the Staff

I apologize in advance to readers who may find this information rather dry and boring. If I were able to deliver it in person, it would be much less ‘textbook' and a lot more interesting! Unfortunately, ALS has made speaking to groups difficult for me so you will just have to wade through this without benefit of my charismatic speaking style, sparkling wit, warmth and bubbly personality! (And doughnuts. I always brought doughnuts!)

To answer any questions on my credentials . . . I am a retired RN. I worked general Med-Surg units, then 5 years in Critical Care where I began specializing in Neuro and earned Neuro Certification (CNRN). I was diagnosed with ALS in 1985 at the age of 37. When my hospital opened a Neuro Unit, I was selected for the position of Neuroscience Educator. In that position I was able to continue working even after I began using a wheelchair. By 1995 arm weakness and fatigue made it too difficult to continue and I retired.

I have been incredibly fortunate in that my ALS has progressed very, very slowly, and, unlike most ALS patients, I have been able to enjoy the years since my retirement. I spend my days at my desk with computer, TV, stereo, and 3 cats to keep me entertained, and a wonderful husband to care for me. My computer has kept me occupied, entertained and even productive. I play games and create photo album CD's, screen savers, brochures, newsletters, etc., for family and friends.

Through the Internet, I communicate daily with other ALS patients, keep up on research and treatments and care issues. I have my own ALS web site ALS From Both Sides which focuses on nursing care, and on practical solutions for the daily problems of ALS.

If you have any questions about ALS or care of ALS patients, I will be glad to answer if I can, or look for the answers for you.
Diane Huberty


Part I: ALS Disease Process
Part II: Care of ALS Patients

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