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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! 🥰

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.

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]

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

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]

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!

Crispr and C9orf72 research and development by Biogen.

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.

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 .

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]

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.

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]

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

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]

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.

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]