Nancy

My sister arrived this week and we were roaming around South Florida the past four days.  The end of the school year is always crazy, and this year has been no exception. I just finished because my year was so busy it was extended by three weeks.  Some how I missed this news until I popped on to check in. I’ve been popping on to try and keep up t…[Read more]

awwww…. what “A–Love-Story” indeed! Congratulations and best wishes to you both! When you two have tied the knot, be sure to tell us all the wonderful details of the happy day… and all about your trip to Europe!

Congratulations Lisa! You certainly are having a lot of fun events right now (starring in a movie…daughter’s marriage…and maybe even more!) 🙂

It’s crack how money drives so much!

Here’s the beautiful Memoriam for Rick on the ALS News Today website:

In Memoriam: Rick Jobus, Feb. 6, 1958-June 19, 2022

Congratulations!!

Mary Kay, we share a birth date!! I turned 55 on Flag Day!

Whoot Whoot!!

Mary Kay – – Congratulations! May you have many ears ahead to continue celebrating with your husband and family!

This month of June – – I’m celebrating a milestone of having been writing my https://alsnewstoday.com/living-well-with-als-dagmar-munn/patient column for ALS News Today… for 5 years! It has been an honor to share my experiences with the ALS community!

That’s around 209 articles! Who knew that there’d be that many topics to write about?!…[Read more]

Sandra – – a couple of thoughts to share with you…

I like the model your friend is using. I’ve seen it used by others with ALS and they report that it is sturdy and of help. However, it seems best for those who have only problems with their Anterior Tibialis muscle (that flexes the foot up). I have in addition to the weak Anterior Tibialis…[Read more]

I don’t put much faith in “crowdsourcing” treatments. Especially if you have no idea if the others are real or fake patients. Plus, there is no medical oversight.

My family has the SOD1 mutation which I also inherited. The Pre-fALS study that I participate in also contributes to this study and many of the participants were in the clinical trials. I’ve been told that as soon as I show significant enough symptoms that I will be a candidate. Irom what I’ve read and from what the researchers have told me,…[Read more]

@Kathy,

Your post is touching and expresses raw emotions that I believe most pALS experience and some may have a difficult time discussing. You are brave and your contributions on the forum are insightful. Thank you for being able to express yourself and to encourage others when you can.

Amanda

Sandra, I have been using AFOs for 10 yrs now. Mine are polypropylene. I have a photo of them on this blog post: https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html
And yes, they are clunky. They feel like I’m walking in ski boots or snowshoe boots. I guess it’s due to the nature of correcting “drop foot” that they feel…[Read more]