-
Beth Rookey replied to the topic What’s going right for you this week? in the forum Living With ALS 8 minutes ago
My only child, Rob, and his gf Emily flew in from Chicago for my 62nd birthday! He’s a chef & made homemade tomato soup then made a pork tenderloin & pears for dinner, everything was SO good! After 30 years of living with ALS, I’m still able to eat 95% of what I want & I enjoy it whenever he cooks! 🥰
-
Brian Stanfield replied to the topic What useful tools or gifts have you found to be most helpful for someone who has ALS? in the forum Living With ALS 27 minutes ago
Before ALS I was hot natured, and kept the thermostat set at a chilled 68 degrees. Today I’m ALWAYS cold. I’ve been gifted several snuggies, which are essential for my everyday comfort.
-
Bill Corrigan replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 hour, 10 minutes ago
PTC-857, CARDINALS. I might participate in it, but I can’t start Relyvrio if I do. So if I started tomorrow, it would be 8 months before I could start Relyvrio. I am on Radacava ORS for a month or so now, and have a prescription for Relyvrio going through the Insurance rigamarole right now. I do think the science checks out on that one. So do I d…[Read more]
-
Mark replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 22 hours, 50 minutes ago
CNM-Au8 at the 30 mg dosage. It’s showing very promising results in a clinical trial. I like that it’s in the planning stage for Phase 3 and hopefully would succeed there and then be available to patients within a reasonable time period.
Coya 302. It sounds promising but it’s very, very early in its clinical testing.
Mark
-
John Wagner replied to the topic What’s going right for you this week? in the forum Living With ALS 1 day, 4 hours ago
First off, I must confess to being jealous of signs of spring. We’re just a short jaunt from the Canadian border, in far upstate New York. Snow and ice are still very much Order of the Day here. Can’t wait to actually see grass again!!
I have likewise been sleeping well, and you’re right in that a good night’s sleep sets the stage for a go…[Read more]
-
Kyla Touchstone became a registered member 1 day, 7 hours ago
-
john hamilton replied to the topic What useful tools or gifts have you found to be most helpful for someone who has ALS? in the forum Living With ALS 1 day, 10 hours ago
For me, with bulbar-onset ALS, I quickly lost my ability to speak. (I’m sure that may have pleased some!) But, no worries, I got a couple of Boogie Boards (<$20, each), online from Amazon. USe them many times each day. Sort of like an Etch-a-Sketch board, but really useful for writing!
-
Angela replied to the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 1 day, 19 hours ago
Crispr and C9orf72 research and development by Biogen.
-
John Walker replied to the topic First Symptoms in the forum Living With ALS 2 days ago
I was diagnosed 2020 with ALS about 2 years after I started losing my speech in 2018. As I recall I started biting my tongue in 2014. I took that as early indication of losing muscle control, aka Bulbar. My legs are going next as I need a cane and rollator. I can still dress, shower and feed myself.
-
Gideon replied to the topic First Symptoms in the forum Living With ALS 2 days, 1 hour ago
My Darling wife was first diagnosed with Parkinson’s disease, Her hands were shaking, lost her ability to smell and test, after 3 Months waiting for appointment with Baylor ALS clinic ,We find out she has first stage of ALS .
-
Dagmar Munn started the topic Which ALS-related science, research, etc. topic is on your radar right now? in the forum Research Topics 2 days, 14 hours ago
Many news articles are being published with updates on new ALS research, studies, treatment, and even lifestyle (diet, quality of life, etc.)
What are the “hot topics” that you are following? Have any stories sparked your interest lately?
-
Gail A replied to the topic Removing phlegm-mucus from throat in the forum A Forum for ALS Caregivers 2 days, 16 hours ago
My husband takes Glycopyrrolate prescribed by his neurologist at the clinic we attend. He also has taken Guiafenesin (plain Mucinex or Robitussin) for excess mucus as necessary. He uses a VOCSN machine which provides the following functions: ventilation(BiPap), oxygen. Cough assist, Suction, and Nebulizer. This is a great machine, invented by a…[Read more]
-
Dagmar Munn replied to the topic Which resources have helped you the most as a caregiver? in the forum A Forum for ALS Caregivers 3 days, 4 hours ago
I recommend our caregiver members check out the columns written by Kristin Neva https://alsnewstoday.com/joyful-sorrow-kristin-neva/ and Juliet Taylor https://alsnewstoday.com/thunder-road-juliet-taylor/
Both write about their experiences, share tips, and are inspiring to read.
-
Dagmar Munn replied to the topic What’s going right for you this week? in the forum Living With ALS 3 days, 4 hours ago
I can say that I was able to have a restful, good night’s sleep all last week. Perhaps it was the change in weather (Spring on its way!) and there’s less need to have the heater on at night. Good sleep has always been important to me, especially now with ALS – – a restless night is amplified the next day feeling stiff, bleary-eyed, and…[Read more]
-
Dagmar Munn replied to the topic What useful tools or gifts have you found to be most helpful for someone who has ALS? in the forum Living With ALS 3 days, 4 hours ago
These are all such good suggestions. I hope our members can find a way to pass these helpful hints along to friends and family.
I wrote about this topic a few years ago… perhaps you’ll glean some more ideas from my post:
How to Help Your Friends When They Ask How to Help You -
Dagmar Munn replied to the topic First Symptoms in the forum Living With ALS 3 days, 4 hours ago
My first symptoms were a profound weakness in my right foot. I dragged my toes and tripped a lot. I was always active and coordinated and even taught yoga & pilates… so, tripping and falling was a big sign to me that something was wrong.
Other ALS patients notice different areas like speech, swallowing, hand weakness, etc. they are all signs of…[Read more]
-
Lisa Johns became a registered member 3 days, 7 hours ago
-
Hello Lisa,
Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]
-
-
Charles Sutherland & Doris Sutherland (caregiver) replied to the topic What kind of power lift chairs are recommended by ALS people like me in the forum Mobility Aides, Assistive Technology and Medical Equipment 4 days, 19 hours ago
My husband recently got thePermobil with the seat elevator. It’s the bomb. He has regained some of the independence he’d lost. He’s back in the cabinets and to the mailbox to retrieve our mail. So happy he has this chair. With ALS, independence, no matter how small, is so important.
-
Les became a registered member 6 days, 7 hours ago
-
Hello Les,
Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]
-
-
Deb replied to the topic Removing phlegm-mucus from throat in the forum A Forum for ALS Caregivers 6 days, 18 hours ago
I’m not sure whether this is helpful at late stage ALS, but I smear Vicks above my top lip and down the front of my neck when going to bed and the vapours help in preventing/relieving the “clagging” of the phlegm and associated coughing. Sometimes I use Vicks during the day too. I also changed from a medium pillow to a firm pillow which gives a…[Read more]
- Load More
Hello Kyla,
Welcome to the forum! I am one of the forum moderators as well as a person living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. You can also search for past topics or discussions by…[Read more]