For Larry Taylor, who kept it moving,
Sean Taylor, who made it possible,
and all other P/CALS, past and present.
Having ALS isn't a choice. A lot of the rest is.
My 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, including whether and where to move, what to do about a job, and who lives with whom. And unless you are diagnosed by a major academic center, a second opinion is always advised.
About me: 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 in 2014, I've been a moderator on the ALS Forums.
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 sells or seeks funding for any services, links, products, or mentions for any aspect of ALS and/or patient/caregiver support in any disease state. I do not outsource any content to other humans or AI, though I make use of P/CALS' experiences and reports, including my own.
(I've tried an ALS chatbot in beta and found it distinctly misleading and torturous.)
Questions? Comments? Tips? The result of these rather belated thoughts is this site. Please use the Contact Form for questions, comments, or topic suggestions.
If you want more to say or read, 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.
In addition to 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.
It's just me. If you email a question, I alone will respond. Anyone with a safe, effective hack, please use the contact form to let me know. If it's good, I'll add it here and elsewhere.
New research, resources, and experiences in ALS and mobility impairments emerge daily. I will be updating these pages, and adding new ones, accordingly.