Donna Caruso

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]

Oh Dagmar, this article is perfect! It is clear all to often that many of our members do not know what are responsibilities are or what we do each day! What started off as a part-time job, an hour or less a day each week, has turned into something that I live for each day! I spend much more time logging on, emailing, researching and reaching out…[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]

Marianne,

How are you and your husband doing now? Thinking of you both.

Amanda

Members – Please understand that this forum topic is not intended to compare Covid to ALS. It is not intended to say that Covid is worse or scarier than ALS. It is a place to discuss how Covid may impact pALS or our families and/or what are we doing differently if anything. Clearly the pandemic has had a negative impact on research, doctors…[Read more]

Covid is taking an uptick here in Florida – at least in the school district I work in. There are a lot of students and staff out yet again. From what I’ve heard on the news and what I have read, this latest variant isn’t as dangerous as previous ones. That’s good for now! I’ve lost several friends and several acquaintances to Covid. We’ve even…[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]