Frankie a reex

Pete, here is something for you to try…

My leg muscles became so weak I almost fell (more like a plop) onto chairs and needed help to stand. Low chairs were miserable. But, I found that at 8 yrs into having ALS I could actually rebuild my leg muscle strength. The key is to do 1-2 repetitions a day… then 3, then 4…

You can read about what I…[Read more]

Kathleen, I understand that ALS doesn’t manifest in only one type of people, but in all personality types and bookworms to athletes.

The challenge over the years is to discover what triggered our bodies to stop flushing out the toxins from our daily oxidative stress. It is the build-up of these toxins that causes our motor neurons to die.…[Read more]

Daniel – – you are my kind of person! I agree with all that you said.
High-fiving with you across the miles!

Beth – – you bet! Keep up that fighting spirit.

Although it’s great to have another ALS treatment join Riluzole and Radicava… I agree with Carolyn that at the price of $158,000 per year, AMX0035 (oops, Relyvrio) is unbelievably expensive.

All three medications slow symptom progression – – so why not choose the cheapest one? Less hassle with insurance coverage and availability.

Relyvrio (AMX0035) Approved in US for ALS Treatment

Relyvrio (AMX0035) Approved in US for ALS Treatment

Looks like AMX0035 has been approved by the FDA.

What do you think of this news? Is this a treatment you would want to try?

Karen and Kelsey,
I’m deeply sadden for your loss and sending you my heartfelt condolences. Thank you for sharing this information with our community.

Warmly,
Amanda

Hi Stephanie,

I’ve read a little about the Tregs clinical trials online. I believe it is looking at cells in an pALS’s body that don’t perform properly (removing blood and separating) and disrupt the immune system, specifically causing (?) or not preventing inflammation in the body.  I can’t remember the exact details.  Did you have specific q…[Read more]

Hi Stephanie,

I’ve read a little about the Tregs clinical trials online. I believe it is looking at cells in an pALS’s body that don’t perform properly (removing blood and separating) and disrupt the immune system, specifically causing (?) or not preventing inflammation in the body.  I can’t remember the exact details.  Did you have specific q…[Read more]

Hi Stephanie,

I’ve read a little about the Tregs clinical trials online. I believe it is looking at cells in an pALS’s body that don’t perform properly (removing blood and separating) and disrupt the immune system, specifically causing (?) or not preventing inflammation in the body.  I can’t remember the exact details.  Did you have specific q…[Read more]

Why do we resist and feel it is a matter of “giving in”?? Pride? Negative connotations of a walker? What others will think of us? There are a lot of emotional reasons and rationalizations.

Funny thing is that none of them include “safety, improved posture, less strain on non-ALS affected muscles.” Because those are logical, rational…[Read more]

Even though I know my doctor and the clinic team won’t judge me for wearing laid-back, casual clothes, I can’t let go of wanting to dress up just a little.

I’ve come to rely on a wellness strategy called “showing up.” It involves a combination of taking care of my appearance no matter how deep a mental funk I happen to be in, and not wanting t…[Read more]

And for the other side’s opinion… here is an interesting article:

“The FDA Is Rushing a New and Unproven ALS Drug”

FDA and its advisors are skeptical the drug works as well as the company purports, and clear evidence of its efficacy won’t be available until 2024 at the earliest. Still, the agency is widely expected to formally approve the d…[Read more]

Thank you Pete!!