Frankie a reex

As ALS progresses how do you address the changes in your relationship? Are you able to have open and honest conversations about how to address needs and concerns or are those conversations challenging? Do you get a lot of support from family members and friends?

As the 2021 Holiday Season continues, how are you preparing? Has having a pALS changed your approach to the holiday season? What will you do differently this year?

Amanda

On 11/26, WHO stated, “On 26 November 2021, WHO designated the variant B.1.1.529 a variant of concern, named Omicron, on the advice of WHO’s Technical Advisory Group on Virus Evolution (TAG-VE). This decision was based on the evidence presented to the TAG-VE that Omicron has several mutations that may have an impact on how it behaves, for e…[Read more]

Good morning (Florida time) Community,

I think the ALS clinics around the world are up and resuming semi-normal or new normal operations because are community is continuing to grow. It saddens be to know that more and more people continue to be diagnosed with ALS; however, I’m sure they will find support and comfort in our tight knit, warm and…[Read more]

Happy Thanksgiving to all of our members that live in the United States. I hope you have a peaceful and joyful holiday.

Amanda

The holidays are fast approaching and we all need to be prepared mentally. We’ve had a heck of a couple of years. Our community is not only dealing with the pandemic, but we also have to adjust to the changes that ALS brings into our lives. Regardless if you area a pALS, caregiver, child of a pALS, ALS continues to bring about changes. Some of…[Read more]

November is a special month!
Because November is National Family Caregivers Month, I encourage you to reach out to any solo caregiver you may know. Maybe all they need is a friendly conversation that allows them to step outside their situation and share a laugh.

Or, maybe they need something more, such as changing a hard-to-reach lightbulb…[Read more]

An upcoming Zoom meeting from EverythingALS caught my attention and I wondered if any of our Forum members have comments about adaptive clothing. This would include everything from shoes to pants, socks to shirts, and more.

Share with us how you solved your clothing challenges. What brands worked well for you. Or, do you have ongoing…[Read more]

According to the website Your ALS Guide:

“People living with ALS often struggle with sleep. Challenges can include feeling anxious, getting comfortable, difficulty breathing, and needing to go to the bathroom throughout the night. Making adjustments to your normal sleep habits can help you get a good night’s sleep, which can improve you…[Read more]

There are research opportunities at the University of Miami for pALS and for pre-symptomatic fALS. I thought I would share the link to their page.

Research

Just being diagnosed with ALS is overwhelming! There are so many things to think about and preparations that need to be made. To complicate things even further, ALS effects each person differently, so knowing exactly what you will need is challenging. Some pALS with limb onset may need to make changes to their homes in order to be independent…[Read more]

Good Morning (Florida Time) Community,

Sorry, I was MIA for a few days. I had my pre-fALS Clinic visit last week. I got through another EMG, nerve testing, cognitive testing and, yes, I made it through the lumbar puncture without passing out! The lidocaine shots (at least 3, but I think 4) hurt more than the actual procedure. Those felt like…[Read more]