4.20.20 My Guardian Angel Wears Antiperspirant

I can't help but think that Carole is smiling knowing that we're rolling her book out on 4/20. Book 1 of 5 for our Talk ALS To Me Virtual Book Club for ALS Awareness Month is “My Guardian Angel Wears Antiperspirant” by Carole Breton and Jeanne Bean Murdock. We will meet virtually to discuss this … Continue reading 4.20.20 My Guardian Angel Wears Antiperspirant

Noninvasive Ventilators Removed from Competitive Bidding in Big Win for ALS Community

The Official Blog of The ALS Association

The Medicare program at the Centers for Medicare & Medicaid Services removed noninvasive ventilators from competitive bidding for durable medical equipment. The decision will keep the devices out of competitive bidding for at least three years and is a victory for ALS advocates. The ALS Association and its partners have led an intense lobbying campaign against competitive bidding for noninvasive ventilators for more than a year. The Medicare program cited COVID-19 in announcing the move.


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Questions and Answers about COVID-19 and Its Impact on People with ALS

The Official Blog of The ALS Association

March 23, 2020 – We have received many questions about COVID-19 and its impact on people with ALS, their families, and their caregivers. We convened a panel of volunteers and staff to answer these questions – their bios are at the bottom. This situation is rapidly changing. We will update this FAQ as we receive more questions and more current information. If you have questions, please email questions@alsa-national.org.

Also, if you would like to hear our panel discuss these issues on a podcast, please check out the March 19 episode of Connecting ALS at ConnectingALS.org.

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Medicare Coverage for Telehealth Visits Expanded During COVID-19 Pandemic

The Official Blog of The ALS Association

In response to congressional action, The Centers for Medicare and Medicaid Services notified providers of a new option for expanded Medicare coverage for telehealth visits. These changes temporarily remove originating site and geographic restrictions from coverage of telehealth under Medicare fee-for-service. This coverage applies to allMedicare-approved telehealth services.

The government temporarily waived restrictions on telehealth in Medicare fee-for-service to enable more seniors to access care from their own homes during the public health emergency brought on by the coronavirus. The provisions were included in the Coronavirus Preparedness and Response Supplemental Appropriations Act.

The telehealth waiver applies to treatment of all diagnosis during the Public Health Emergency, not just COVID-19-related visits.


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3.18.20 Wild Animals

Did you know that March 12th is celebrated as the birthday of Girl Scouts? 2020 marks the 108th birthday of this wonderful organization that played a significant role in my childhood. Also, I was awarded this fun honor a few years ago from the Girl Scouts of Texas Oklahoma Plains. Woman of Distinction - June … Continue reading 3.18.20 Wild Animals

3.16.20 Certifiably Insane

I've been all over the place lately, both physically and mentally. SunnyStrong has exploded recently and we've added a bunch of new followers so I'd like to reintroduce our crazy into the world. Hi, I'm Sunny and I'm certifiably insane. I was diagnosed with Amyotrophic Lateral Sclerosis on January 20, 2015. My definition of normal … Continue reading 3.16.20 Certifiably Insane

My Diagnosis Anniversary: Revisiting the Start of My ALS Journey

But guilt is a deft navigator. It finds an alternate route to menace me. It approaches via my love-of-family portal. The spillover effect that terminal illness has on family members is painful, often chronic, and it can be debilitating. Family members who see me regularly have been forced into a caregiving capacity, their lives indefinitely … Continue reading My Diagnosis Anniversary: Revisiting the Start of My ALS Journey

2.11.20 Wine Not?

"Give me the reigns and let me run, 'Cause I ain't never had to much fun" This weekend away to Fredericksburg with these knuckleheads was good for the soul. Thankfully, we're all still able to laugh and joke with each other because there is no mercy amongst this bunch. Airbnb booked, Wine Shuttle secured and … Continue reading 2.11.20 Wine Not?