[Elizabeth Benz]

I have a cough assist machine and also a suctioning device.  I esp appreciate the suctioning because I get mucous up to a certain spot but can’t cough it out and it feels like it blocks my airway.  So I feel better being able to go in and try to suction it out.  It’s messy and not as effective when I do it to myself.  But then again I can feel where it seems to be.

Good luck!

[Elizabeth Benz]

Walter, I too am sorry to read about your situation.  I don’t know where you live but I hope you can contact your local ALS Association chapter.  They  have been incredibly helpful to me , esp. with equipment from their loan closet.  Best of luck – God bless you.

[Elizabeth Benz]

Another place you might want to post is on the ALS Forum for Women (Lou Gehrig’s disease) on Facebook.  Both CALS and PALS are active there

[Elizabeth Benz]

I’ve been on the infusions since Dec. 2019.

As Martino said “as we do not know what the progression would have been without Edaravone in my case I cannot really say if and how much Edaravone has helped.”

I just figured I’d give it a try.

[Elizabeth Benz]

I’m having increasing problems swallowing too.  I have good friends who are speech therapists and said to take the pills with applesauce.  It makes such a difference for now.  At some point they may need to crushed too.

I am using Simply Thick in my liquids.  It comes in powder or liquid.  We have a quart bottle of the liquid with a pump that makes it very easy.  But it is very sticky so if some gets on the cup it needs to be washed.

[Elizabeth Benz]

I’ve had a cough assist for several weeks now.  It blows air in and sucks it out.   It was on the lowest settings. I thought it was just keeping my lungs pliable.  Last week a bout of heavy congestion started with lots of nose blowing, coughing/choking.  I could feel the gunk rattling around in my throat but can’t cough well enough to get it out.  At times it would block my airway so I felt like I couldn’t breathe.

I contacted my team and they upped the settings yesterday. It feels much more effective.

Good luck.

[Elizabeth Benz]

If you just want FUNNY I highly recommend the audiobook of CRAZY RICH ASIANS.  I do lots of audiobooks and this is 1 of the funniest I have ever heard.  It is so well read that I can’t imagine reading it to myself and getting the same laughter.  It is SOOOOO much better than the movie – no comparison at all!

[Elizabeth Benz]

I’ve been on Radicava for a few months now.  Our regime is 10 of 14 days on, then 14 days off for a 28 day full cycle.  My spouse was trained to do the infusions at home and he doesn’t mind too much.  He also has to flush the lines daily which is quick and easy. The supplies are delivered to us monthly.  We do have to go in to the clinic weekly for my PICC line dressing change.  On the whole so far, so good.  I really hope the trial for a pill form will work out.  That would  be great!

As far as does it work?  I don’t know.  My understanding is that it is hoped to slow the progression.  As I get weaker I think that the impact of increasing weakness becomes ever more apparent as it impacts my function more.  But I plan to keep giving it a shot in the hope that it is helping..