billybob

I love your take on joy. My late husband and I made it a mission to seek joy. ALS was not allowed to rob us of that. After his death, I earned an LMSW and work at the ALS Clinic of the MidSouth. That is my mission - ALS WILL NOT STEAL YOUR JOY. Reach out to me any time.

Hi billybob-

You've posted on your own profile page and not the general forum. I am copying your post and will place it on the forum so folks can see it. Here is the link: http://www.alsforums.com/forum/people-als-pals/41723-billybob-s-post-re-emst150.html#post439291

Hello! At my last visit to the SLP therapist, my MEP average was 58. Discussion followed regarding a PEG and ventilator. After sharing with her I wanted to try everything else to forestall those devices, she gave me a gizmo called EMST150. It's an "Expiratory Muscle Strength Trainer. Has anyone else had experience with this device? If so, did it help improve your Maximum Expiratory Pressure (MEP)?

Does anyone have knowldge and experience with ACE claim status. I was told yesterday by the Orlando VAMC that my ALS claim is being moved to ACE status. The person on the phone told me ACE stands for "Accepted Claim Evidence"??. I wonder what's next as it moves through the system

Btw, I meant to specify ebenefits site was where I tried to enroll him. You can check your claim status there as well as view your med records and do much more.

Hi Billybob!

I don't know how the message meant for you from me I posted to Gregk's page. I'm can be a whack a doodle.

Timeline: my twin diagnosed on 8/26 @ Duke after being referred there by neurologist, Dr Radoff in Knoxville. Va referred him Radoff after a couple of years of failure to dx. 9/18, full MRI ordered by Radoff.

9/25, PVA did intent to file. Week later, Radoff confirmed Dukes dx.

PVA gave my brother a VA ALS questionnaire for Radoff. Completed and submitted w/ claim. Brother called PVA, said they hadn't heard anything. Same afternoon PVA calls to say he's approved?

Couple of days ago called VA 1 800# after getting locked out of site for failure to complete w/in 2 min. time frame. Just for the hell of it asked about his claim ($) and was told that his 1st check was scheduled for direct deposit into his account on 11/1.

Let me know what's going on with you and if you need help.

Tina

Hi Billybob, hope you don't mind me posting message here. My partner spent a few months at Shands for treatment. I live in Polk County so when I would visit, I normally stayed a few days at a motel. I got lost one time and ended up at the VA there and was amazed at how huge the facility is! My brother is working w/ an Rep from PVA. Da Chief, a member on this forum also had help from the PVA. They're very good. Which organization has helped you? Da Chief said all my brother needed was a single page letter w/ dx stating "ALS"