Tradition of Hope

[Mtzu]

Last night Andrea and I attended the Augie’s Quest Tradition of Hope Gala at the Beverly Hilton Hotel. The food was great, the entertainment was spectacular, and most important we met many wonderful people who are very dedicated to finding a cure for ALS. Last night over a million dollars was raised that will be utilized for research for a cure for this disease.

One of the people we had the pleasure of meeting was Augie. He has created an amazing organization that is very dedicated to finding a cure. He's definitely a force of good for all of us. Another person we got to meet was Dr. Steve Perrin from ALSTDI. He flew out from Boston just to attend this event. As busy as he is, he's willing to take time to talk and answer questions. He gave me some great insight with regard to exercise for pALS. He also indicated that great strides have been made toward finding the cure that we all so desperately want. The sliver of hope I got from that conversation is more than I've had since diagnosis. We met so many other wonderful people but the list is too long to list here and now.

I'd say the takeaway for us is how many people are dedicated to helping us. And, the increasing amount of resources that are being developed by those people. Hope is often hard to come by with ALS. So I thought I'd share the little bit that I found.

 

[rogeriopaguilar]

Can you write what he said about exercise for pALS?
Thanks.

 

[Mtzu]

At one point during the conversation, we were talking about physical activity and exercise to which I expressed my concern about the breakdown of muscle tissue due to exercise and that the tissue may not be regenerated. He told me that moderate exercise can be helpful and that I should be doing it.

Additionally, last night I also learned that Augie has actually gained a little bit of strength in his legs from some the exercises he's doing. I will try to find out more about what it is he's doing. I didn't know increased strength was even possible.

 

[rogeriopaguilar]

Thank you. Maybe you can gain strength in a place where you didn't lose all. I don't know. If you discover anything more about this please post here. I became curious about that too. I know that in the deanna protocol they recommend doing some exercises too.
Thank you very much.

 

[Nikki J]

Here is a link to an ALS-TDI page about exercise theory
Story: Exercise: stretching the limits of ALS care | ALS Therapy Development Institute

 

[Mtzu]

Nikki, Thanks so much for this link. That's a huge help. I didn't know they had a resource like that available. So much to learn and so little time.

 

[rogeriopaguilar]

Cool, Nikki. I will read the article.

 

[Green Queen]

Michael I can tell the night out lifted your spirits immeasurably. That alone is awesome.

Thanks for sharing the information on exercise Nikki.

God bless, Janelle x

 

[chally]

hey michael, thanks for the uplift, i needed that good to know folks are out there helping . love ya chally