NANDHINI

Mary Jo, …range of motion exercises, every day! Bravo!

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!) 🙂

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

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

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.

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]

Lynn, (and interested pALS) “getting up from a chair” used to be a huge effort (and often impossible) for me too. Interestingly, I challenged myself to strengthen my leg muscles by doing 1 or 2 air squats every day. I thought if my muscles didn’t respond, I wouldn’t be any worse off.

That was 3 years ago, and I’m up to doing 40 chair squats/day -…[Read more]

Those are interesting observations Chris. Question – – have you considered daily gentle exercise to help prevent muscle atrophy. Like chair exercises or doing them on your bed mattress? Even having someone help you with passive range of motion movements can be of help.

Yes, I miss being able to take off running too. Interestingly, I use a rebounder to walk in place… once in a while I go a little faster (soggy jog!) and it “feels” like I’m running.

Yes, gulping down a glass of water. For a long time, I had yearnings to drink 7-up. Missed that tart fizzy taste 😉

I agree Maggie. It was hard for me to always ask others “please, can you help me do…?” But I’ve since found that others really want to help and feel good that they did.