At night I use CBD lotion on my feet and hands being a totally quadriplegic from ALS help me sleep and releasing me from having a painful night.

Been on it since diagnosis sporadic limb onset in Jan 2018 (symptoms started Jan 2015 ) was tablet now liquid peg  form. No side effects .

Go to a multidisciplinary ALS clinic

Join an ALS support group (ALS.ORG) plus multiple groups on facebook…but there is more uplifting than interactions with other PALS going thru what you are.

If your female and are used to putting on makeup …get tattooed eyeliner (expensive but worth every penny)

Don’t wait to stop work and… Read more

Hi Michael ,

ALS is the last diagnosis to give. I too went thru 2 spinal surgeries (cervical in 2015 when my hands and arms started to have problems) (lumbar fusion in 2017 when my legs and core started going)…during this time seeing neurologists and having two EMGs on only one hand, then one foot and arm which they chalked up… Read more

Hi Everyone my name is Susan diagnosed January 2018 limb onset ALS, misdiagnosed for 3 years. Currently a total quadriplegic with peg tube and limited speech and swallowing function , diaphragm muscles FVC 26 on non-invasive ventalation . ALS Advocate, mother, wife and always up for one more adventure while I’m here.

If your newly diagnosed… Read more

Excellent analysis of how we handle our diagnosis . My childhood memory is from horseback riding…no matter how hard you get thrown you dust yourself up and get back on the saddle .

Steve Gleason and The Gleason Foundation ! Steve Gleason still amazes me how much he has done and continues to do for PALS and his local community. The most inspirational person in my life that I currently live as a ALS quadriplegic.

YES HARDER FOR PEOPLE TO UNDERSTAND ME/..USE VOICE AMPLIFIER .