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Amanda started the topic "How Do You Navigate Difficult Topics Like Mortality?" in the forum Living With ALS 2 days, 14 hours ago

On our forum, we try to tackle all things ALS, even though some topics are scary and challenging to discuss. We all know that ALS is a terminal illness even though many pALS are living longer. We try to focus on having a good quality of life now!

Everyone, pALS and otherwise, have to face our mortality. When you are diagnosed with a terminal…[Read more]

Amanda started the topic What Research Should Be Focused On? in the forum Research Topics 4 days, 14 hours ago

ALS research is important to all of us in the ALS community. I know we all would agree that finding a cure for ALS would be our top research wish. We also know that ALS is what I refer to as a “catch-all” term, meaning that there may be different causes that lead to what is diagnosed as ALS. Outside of finding a cure (as I said, that’s our numbe…[Read more]

Amanda replied to the topic How Do You “Take a Break” From Caregiving? in the forum A Forum for ALS Caregivers 1 week, 1 day ago

George,
That is wonderful to hear for the both of you.

Amanda started the topic What Research Do You Think Should Be Targeted? in the forum Research Topics 1 week, 2 days ago

ALS research is important to all of us in the ALS community. I know we all would agree that finding a cure for ALS would be our top research wish. We also know that ALS is what I refer to as a “catch-all” term, meaning that there may be different causes that lead to what is diagnosed as ALS. Outside of finding a cure (as I said, that’s our numbe…[Read more]

Amanda replied to the topic In Miami no clinical trials here in the forum Research Topics 2 weeks, 1 day ago

@Judy,
Where are you going? What symptoms are you trying to address and with what medication? Did they provide a reason to why they won’t provide a prescription? Perhaps there is another doctor that can provide you with the medications.
Amanda

Amanda started the topic Major Stressors Caregivers Face in the forum A Forum for ALS Caregivers 2 weeks, 4 days ago

Many of the topics discussed on our ALS forum pertain to pALS living with ALS. I am very grateful to have this online community made of patients to turn to and discuss things about living with ALS and ALS research. However, I’d like to turn the focus to our brave, heroic, and selfless caregivers for this post.

Caregivers are amazing, but they a…[Read more]

Amanda started the topic ALS Awareness Month…We Need You to get involved. in the forum ALS Awareness and Advocacy 3 weeks ago

Every May is ALS Awareness Month and here at BioNews/ALS News Today we try to focus on raising awareness. This year we are asking that each forum community member also participates in some way large or small! You can raise awareness by sharing your story or facts about ALS on social media, participating in ALS Walks in person or virtually, asking…[Read more]

Amanda replied to the topic Long Journey in the forum Diagnosis Information and General Questions 3 weeks, 6 days ago

@ Mike and @John,

First, thank you for sharing your stories. I am glad that you found the forums a safe place to share and process some of what you are both experiencing. As you can see, our online community is amazingly supportive. Also, you know that you are not alone in dealing with some doctors who are not well informed about ALS and in my…[Read more]

Amanda replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 3 weeks, 6 days ago

Lisa,

What a wonderful idea and thank you so much for sharing. I posted this on my FB page!! Definitely add this to the ALS Awareness Month forum if you haven’t already!!!

Amanda

Amanda replied to the topic Thoughts and ideas in the forum ALS and Relationships 1 month ago

@Nancy,

It’s been a while since we started this thread and I wanted to check in with you and see how things were going. I know from your previous post that you and your husband had a lot on your plates. How are you both doing now?

Amanda replied to the topic Care giver check in in the forum A Forum for ALS Caregivers 1 month ago

Hey there cALS,

How is everyone doing now that we are a quarter the way through 2022? Do you have any updates, funny stories or memories you would like to share?

Chime in and let us know how things are going!!

Amanda

Amanda replied to the topic Applying for disability and medicare in the forum Living With ALS 1 month ago

John,

I found this on the AARP website. I don’t know if it will be helpful for you or not.

https://www.aarp.org/retirement/social-security/questions-answers/enroll-medicare-not-ss.html

Can I get Medicare if I’m not getting Social Security yet?
AARP

Yes. But you should be aware of the enrollment deadlines, as Social Security wi…[Read more]

Amanda replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 1 month ago

Bill, that is a lot of loss! I am so sorry. Do you have favorite memories that you could share of each of them? Sometimes when I miss my father, I try to think of something he did that always made me laugh or smile. I hope that you have a lot of fond memories to hold on to.

Amanda replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month ago

Saturday, April 16, 2022
Support Team Gleason’s 2022 Crescent City Classic Team!

IN-PERSON OR VIRTUAL 10K Run/Walk
Support Team Gleason’s 2022 Caesars Sportsbook Crescent City Classic Team!

Each year, runners/walkers/joggers/rollers like you have signed up to help raise needed funds for Team Gleason. We hope you’ll support our team and help…[Read more]

Amanda replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month ago

On May 14th we have an ALS Walk to Defeat ALS in Estero Florida.

Amanda

Amanda replied to the topic A collection of ALS awareness events in the forum ALS Awareness Month 1 month ago

Dagmar,
I love this idea! Let us all focus on what IS happening around us that is shining a light on ALS. Also, what are we going to do to get involved? There are so many things that pALS and cALS (and all of our friends) can do to advocate and raise awareness!!

Amanda replied to the topic I would like to remember those in my family who have lost their battle with ALS in the forum In Loving Memory 1 month ago

John,

I’m so sorry for all of your losses. ALS is devastating, and it looks like your family may have a genetic predisposition. That also carries a heavy weight to bear. You have my deepest condolences.

Amanda

Amanda started the topic What are you Doing for ALS Awareness Month May 2022? in the forum ALS Awareness Month 1 month, 1 week ago

I just started a team for the May 14th ALS Walk to Defeat ALS in Estero Florida. I’m excited because this is the first time since the pandemic started that I’ve been able to coordinate a team for the walk. I moved to SWFL just before the pandemic started. It looks like about 10 of my coworkers and friends (so far) are joining me. If you are…[Read more]

Amanda replied to the topic ALS Awareness Month- May 2022 in the forum ALS Awareness Month 1 month, 2 weeks ago

Kathy,

You asked me about this in our message and I forgot to respond!! I’m so sorry. Dagmar and I have been communicating but our plans are not concrete yet. As soon as things are set in stone we will make an announcement!

Amanda replied to the topic What's the latest news on AMX0035? in the forum Research Topics 1 month, 2 weeks ago

Duane,

I understand your opinion and your post response. My father felt similarly regarding ALS treatments. He did not want to live longer because of his quality of life being poor in his opinion. He did not seek medical attention or take anything to address ALS or any of the symptoms. The only time he accepted medical assistance was when he…[Read more]