patricia1

great to hear from you .How is your progression .l pray it is slow

pat

hi pat,it was great to see you posting. i did see an old post of yours some weeks back and was thinking about you. good to see your still with us
hope you have a great xmas and newyear.
love caroline.

hi rose
thanks for your concern
l bought a new eyemax and couldn't get on without a password.Sooo frustrated but David helped
How are you ? Can you believe l am on my thirteenth years with als. no bipap or feeding tube .waiting for the shoe to drop.
l am against prolonging this torture
How your okay
pat

Pat, I hope you're doing well, and just haven't been on due to difficulty using the computer. Wishing you and your family a Happy Happy Merry Merry Christmas

does anyone know of a hands free device l can use from my bed to call poice family or neighor

Pat,

I have not seen you post in a long while, how are you?

why? whats going on

Hi, Pat. I'm so glad you're going to give it a try. I just this morning received my first batch of post-trial meds, and am hoping they work as well as the trial meds did.

I am on b/p med (beta blocker Metropolol), but it's to regulate my heart rate not b/p. Because I've had a heart attack and open heart surgery, they were worried about that. They did an EKG on every visit, and the only issue they ever found was a few extra heart beats when I first started. My cardiologist agreed with the neuro that it was nothing to worry about.

I could not feel them, and have had no problems. Good luck! Let me know how it works !!

Hi, Pat ... I am still able to put more energy and expression into my speech, but the articulation is really bad. Swallowing is OK ... I choke occasionally, but mostly I do pretty well, especially with solids. I still have the feeling of more overall energy and mental focus than before. Beth

Hi, Pat ... Because of my heart disease, they've been very careful. They give me an EKG at each visit, and the only problem was a few extra heart beats a few weeks ago. My neuro consulted with my cardiologist, and they agreed it was no problem. I hope you get the same benefits I did!

Still trying to find out about Zenvia. I e-mailed the clinical trial people, but they misunderstood my question. I go back on Friday, so I'll find out then, I hope

Beth

The stock price went down 2 points, but I don't see anything about discontinuing Zenvia. I think it's their biggest seller, as it's also a treatment for diabetes periferal (sp?) neuropothy (sp?). I'll e-mail the study manager tomorrow & see what she knows. Thanks again.
Beth

Pat ... no, I didn't hear that about Zenvia. Boy, I'm in trouble now... Thanks for the head's up. (Wonder what that will do to all the trials going on. Jimmercat's husband is in the same trial.)

Patricia, Thank you for your kind words and honesty. After all your speaking for living the life not scouring the internet for responses to me. I guess as you know as well more than I its just a hard thing to shake when you've read so much crap ya know?! My neuro merely laughed at me when I called at about 10 months into and said "you would KNOW not just ME but YOU would know and others around you would know if you had ALS @ this point". I guess I just think I will be a rare case. Ya know?
I'll give plenty of kisses to the little one..
Thank you ofr always being there for me.
DeeDee

Thank you for the kind words. I am trying my hardest to stay postive. The baby is growing so much, he will be 2 in jan. I hope you are doing ok.
Ashley