Janelle, please accept my deepest and most sincere apologies... I just came across this note from you nearly a year and a half since you posted it! BTW, between March of 2015 and now, my diagnosis was changed from PLS to ALS.
I too light candles galore for folks, Janelle, and will continue that cherished tradition just as long as humanly possible! All truly is well here... yeah, more than a slight bit of an inconvenience, but nothing nearly as bad as many have it!
God bless, Janelle!!! and I do hope to be seeing you around.
"Feeling lost is not so bad when you know someone will find you.
Very glad we found you."
You wrote that--one of the most beautiful things I've read--and the heart of the forum; in fact, I think it's kind of the reason we're all on this earth together. You are such a beautiful spirit, Janelle. Just wanted to say it. -Cindy
Hi Janelle, my brother is still in intensive care. They trached him this morning. Hopefully that will help. I hesitantly went to Chicago for the past three days to meet my two newest grandchildren for the first time . It was so exhausting and will take a few days to get back some strength. But was worth it!
Thank you for asking.
Hey there - I tried posting an update on your Voice Banking thread but can't seem to get it through/approved?... I found a pretty sweet group of people on FaceBook called "ALS - Patient and Caregiver tips for every day living", and was provided with what I found to be quite helpful feedback on our voice banking options. The most highly recommended for affordable (FREE) and user friendly options was by far and above - Model Talker. Here is a YouTube video of one gent who describes his own experience & provides some good tips for most effectively using the device. http://youtu.be/POlvpVSx970 and the site for the device itself is https://www.modeltalker.org/
Apparently it is in the 'Beta Phase' and this is the reason it is currently free of charge.
I truly hope the best for you, and would love to hear your thoughts on this option - if you do choose to go through with it.