Cindy

@Alan,
That’s what I’ve been telling the research team at Miami, “You can have my brain and body as soon as I’m done with them.” Great minds 🙂

Amanda

Maryann, Theracumin studies show it is helpful in reducing joint inflammation, increasing memory in older adults, and aides the gut with digestion – – but it had no direct effect on ALS symptoms.

In deciding to take a popular supplement, it is always good to know exactly what it can and cannot do. Regarding ALS and supplements a good resource to…[Read more]

I completely understand looking for a cure, or even a miracle. I really do! I’m the 15th person in my family to have ALS, and I’ve watch many family members succumb to the beast. Perhaps because ALS has been in my family, and life for decades, I’ve researched the daylights out of miracle cures and alternatives to the traditional treatments or…[Read more]

Rich, I believe your statement would be more on point if written this way: a lot of people have this bacteria which can lead to Lyme disease and they have been misdiagnosed as having ALS.

This article appears to be more of a literature review with various hypothesis. Most of these have been researched and continue to be investigated from what I’ve read in other articles. It is important to look at peer reviewed medical/scientific journal articles when researching and make sure the article is not someone’s ideas. Also, until they…[Read more]

Excellent! Excellent article – – and thank you Amanda for your contribution of facts, resources, and helpful tips.

Rich, brellie bacteria causes Lyme disease.

Congratulations on jumping through all the hoops to be able to take Tofersen! And, your recent interview was fabulous!

Cape Coral woman with genetic ALS to test newly approved drug

I’ve been taking Riluzole for 13 yrs now and here are my thoughts: taking it during or immediately following a meal gives me…[Read more]

That was a great interview Amanda! Thank you for helping to raise awareness of ALS. I’m so happy for you that you are approved for the new treatment.

(your tattoo looked pretty nifty too!!)

Hello Forum Members – – – these are all great tips! But I’m sure you all have more to share. Let’s fill this discussion topic with all your advice for other pALS and cALS. Here’s a recap of the request:

What are some of your tips, advice, or general words of wisdom or inspiration for other members of the ALS community? Maybe it’s something y…[Read more]

My tip: When at ALS Clinic appointments always listen, bring along an open mind and a positive attitude. Don’t be afraid to ask lots of questions such as, “What do you suggest I do to maintain where I am right now?” and write down everything so you can follow up at home.

Svarog, that is an impressive collection of charts! Are you the sole creator, or is this a collaboration?

Maryann, I’m curious… did you encounter any difficulty in having your health insurance pay for you to take all 3 Rs? ( riluzole, radicava and relyvrio)

Maryann, I’m sorry. I miss read the “who” part.