Michelle Lorenz has been gathering this information from across the United States for the past year. Below is a link to the Facebook group where we have been contributing our local information, and you can see it by state.  I can’t remember if it is a private group or not, but the information is… Read more

I have been taking riluzole for 18 months with no problems. My neurologist checks  my liver function (blood test) every 3 moths to ensure the riluzole is not causing any liver problems. I would talk to the prescribing doctor about the nausea and fatigue.

I found the ALS Association’s of making ALS a livable disease by 2030 is appalling. They have had years to support finding treatments, and they have failed. I find it very frustrating that they spend more on salaries than the do on research and supporting pALS and cALS.

Richard,

I am more concerned with quality of life than life expectancy. If I live 10 years and 6 are immobile and dependent on someone else, that doesn’t sound like living. My neurologist likes to say it’s about living longer, but for me it’s about having quality not quantity.
This is just my opinion, and I might feel differently if I had young children.

I use Text To Speech on my phone and iPad. It works great for phone calls and just for conversation. When I’m making a phone call, I always plan ahead for what I want to say and what I think the will ask. I’ve also used it to ask Alexa to do things. The app is free if you allow the ads or a one time charge of $4.99 to go ad free (well worth it… Read more

I live in Washington State and the governor just made the vaccine available to those 65 and over yesterday. Until that happened, I didn’t qualify.

Sorry to hear about your fall, one of my biggest fears.

My Alexa dots can’t understand me so I am not able to use them to make any phone calls. I use an app on my phone, Text to Speech, to tell Alexa what I need, but that doesn’t help if you don’t have your phone. I am also able to use a text feature in the Alexa app, again using my phone, to… Read more

So am I reading this correctly?

”I agree with Dagmar that money should be spent on people who decline slower.”

Are you saying those with fast progression should be put aside and only those with slow progression should be considered for treatment??

I’m sorry, this comment just seems a bit calloused.