For Larry Taylor, who kept it moving,
and Sean Taylor, who made it possible

You are here.

My general advice to PALS is to live your life until you can't, and then, to die well. I do my best to help on both those counts. If you have been recently diagnosed, or know someone who is, give yourself some time before making any life-changing decisions.

Who
My husband, Larry Taylor, had ALS for five years and Marfan (often fatal in its own right) for 65. I've also been active in the Marfan community.

Since Larry's death, I've been a moderator on the ALS Forums for nine years.

More on my professional work in health care, including scientific publications and helping to launch various drugs and devices, is here.

Neither I nor this site will ever sell or seek funding for any services, links, products, or mentions for any aspect of ALS and/or patient/caregiver support in any disease state. I will never outsource any content to other humans or AI.

Why
With more than 14,000 posts on the Forums, whatever wisdom I might be imparting isn't always easy to find there, even with a search box.

The major ALS "guides" can be lacking in "on-the-ground experience" and/or scientific accuracy. And chatbot/AI-created ALS information is unavoidably bland and generalized —two things I try not to be.

What
The result of these rather belated thoughts is this site. Please use the Contact Form for questions, comments, or topic suggestions.

As well as ALS, much of the content here applies equally well to people with mobility impairments from other conditions, such as spinal cord injury (SCI), multiple sclerosis (MS), muscular dystrophy, Parkinson's, and stroke.

How
If you email me, I alone will respond.

When
New research, resources, and experiences in ALS and mobility impairments emerge daily. I will be updating these pages, and adding new ones, accordingly. The current queue includes toileting, living room stuff, resources, and travel.

Where Else
On the ALS Forums, P/CALS (people with ALS and their caregivers) post daily on topics not covered here, share new options, and remind each other of the established ones. Populated primarily by young adult caregivers, r/ALS is another space to which I contribute.