George T.

Jennifer, the updated link is:

ALS Patients Can Get Medicare Cover for Home Healthcare

Bill – – yes, it’s too bad that Speech therapists in the clinics don’t offer voice techniques earlier and instead focus on tech and AI communication solutions. Patients should be more assertive and ask for specific voice techniques and not be sidelined into giving up so soon.

I’m sorry you are dealing with tongue atrophy – – in your case, the…[Read more]

I’m not a medical expert, and everyone’s ALS symptoms vary from person to person – – so what is working for me may or may not work for you. But, if you’re anything like me… I figured, what’s the worst that could happen? I could lose my voice… 😊.

1. Premier option: “Living Speech Series for ALS”

This is an excellent online program cov…[Read more]

Klara, I would be happy to share what I’ve been doing to help keep me talking 😀 Rather than post my reply here in this discussion thread, I will gather ALL my information and links and start a new topic in the Living with ALS forum. (I’ll do that tomorrow, on Saturday) That way, more folks can read it and benefit 🙂

May is ALS Awareness Month in the US. In Canada, it is held in June. Also, RARE Disease Day will be on February, 28th.

Amanda and I would love to hear your ideas and suggestions of how we can highlight these awareness days/months here on our forum. Have you heard of any good activities other groups are doing?

Marianne, I too wear a mouth guard at night. About 4 yrs. ago I began grinding my teeth at night which affected not only my husband’s sleep – – but was wearing down a few of my teeth (ack!). So, the dentist made me one, and I’ve worn it ever since. The grinding continues, but safely now.

I don’t grind during the day though. And found that…[Read more]

Thank you for your kind words, Alex!

Maya… and everyone, here is the link to my ALS and Wellness Blog – – where I share ALS wellness tips and motivation 🙂

https://alsandwellness.blogspot.com/

Happy 2022 everyone! And… omicron is still surging. It’s here, but hasn’t made a bad hit in our region of the US (southern Arizona) yet…but I’m still being super careful.

Have decided to go back to wearing double masks. And hoping all my vaccines and booster will help shield me from the worst.

Meanwhile, I’m stuck at home – – and will…[Read more]

Maya,

Here is link to an online ALSFRS-R (ALS functional rating scale) that you can use – – it even calculates your total for you 🙂

https://www.outcomes-umassmed.org/als/alsscale.aspx

Here are the “Top 10 ALS Stories of 2021” (remember, they are the 10 most-read ALS news articles of the last year)

Top 10 ALS Stories of 2021

What news topics did you find most interesting? Which ones do you think hold the most promise going forward?

Richard – – I believe what you are referring to are the “top 10 most-read stories” therefore, judging the story on its merit or if it described successful ALS treatments is a moot point. These are simply popular articles.

I would be interested, however, in what forum members think are the top “advancements” were in 2021.

Daniel,
Here are are few opportunities for those of us over the “3-year” cut-off mark:

With Clinical Trial Criteria, We’re Stuck on the Outside, Looking In

For the past three years, I’ve been participating in the ALS Therapy Development Institute‘s Precision Medicine Program (PMP) https://www.als.net/precision-medicine/. Every two weeks, I compl…[Read more]

Lisa and Sava,
I would be careful trusting sites that encourage “crowd sourcing” treatments for ALS (or any serious condition). Bypassing medical advice or second-guessing your physician’s recommendations to turn to complete strangers, without medical experience …?? why?

I took a look at this site, the ALS category is (quote) “not developed…[Read more]