

Susan Hoerber
-
Susan Hoerber replied to the discussion Can Cannabis Help People with ALS? in the forum Research Topics 4 years ago
Can Cannabis Help People with ALS?
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.
-
Susan Hoerber replied to the discussion Rilozole experience? in the forum Caregivers and Family 4 years ago
Been on it since diagnosis sporadic limb onset in Jan 2018 (symptoms started Jan 2015 ) was tablet now liquid peg form. No side effects .
-
Susan Hoerber replied to the discussion Best Advice for New Members in the forum Diagnosis Information and General Questions 5 years ago
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
-
Susan Hoerber replied to the discussion can someone give advice? in the forum Diagnosis Information and General Questions 5 years ago
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
-
Susan Hoerber replied to the discussion Calling all pALS 1+ years with ALS: Let’s help our newly diagnosed members in the forum Living With ALS 5 years ago
Calling all pALS 1+ years with ALS: Let’s help our newly diagnosed members
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
-
Susan Hoerber replied to the discussion A Childhood Lesson That Might Help You With Your ALS Diagnose in the forum Flash Briefings 5 years ago
A Childhood Lesson That Might Help You With Your ALS Diagnose
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 .
-
Susan Hoerber replied to the discussion pALS continue to make a difference in the fight against ALS in the forum Awareness and Advocacy 5 years ago
pALS continue to make a difference in the fight against ALS
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.
-
Susan Hoerber replied to the discussion Do You have Difficulty Speaking? (Part 2) in the forum Living With ALS 5 years ago
Do You have Difficulty Speaking? (Part 2)
YES HARDER FOR PEOPLE TO UNDERSTAND ME/..USE VOICE AMPLIFIER .
-
Susan Hoerber became a registered member 5 years ago
-
Hello Susan, my name is Dagmar. I’m one of the forum co-moderators and wanted to welcome you and thank you for joining our forum! We hope you will take the time to go through all the open conversations that are in progress and feel free to join in. If you have any questions or concerns or even suggestions, just let us know, and we will do our… Read more
-
Hello Susan, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are glad that you joined us. Have a look around the discussion and threads and feel free to comment, ask questions and respond to other members. If you have suggestions on how to improve the forum just let us know.
- View 1 reply
-