1. M

    Trach - pros/cons

    Hello friends in common! My husband has Bulbar onset ALS diagnosed 4/2013. Has a DPS and feeding tube. Eats through tube, can still talk some, can walk to the bathroom (with leg braces) with walker otherwise needs the power chair. Is all there mentally and a very intelligent man. His...
  2. G

    DPS Enrollment Halted

    http://www.mda.org/media/press-releases/enrollment-diaphragm-pacing-systems-people-als-halted In September, the Data Safety and Monitoring Board (DSMB), constituted to oversee the Diaphragm Pacing System in Participants with Amyotrophic Lateral Sclerosis (DPS in ALS) study, being conducted in...
  3. Nikki J

    Phase 3 tirasemtiv enrolling

    5 sites currently but there are going to be more so check back on the listing. No DPS, no Bipap, respiratory 70% or higher symptoms less than 2 years https://www.clinicaltrials.gov/ct2/show/NCT02496767?term=Amyotrophic&recr=Open&cntry1=NA%3AUS&rank=8
  4. Nuts

    DPS Surgery Discontinued at Duke

    We're at Duke for our quarterly clinic appointment and just learned that they've stopped doing the DPS surgery here. Apparently a study out of England showed that people who have the surgery are not living as long as those who don't. They don't know if it's the pacer wearing out the diaphram or...
  5. starente15

    Maybe this can help someone

    Since diagnosis last year, my parents have had a lot of difficulty accepting the situation, which is understandable, and have often been quick to say no to things without understanding or explanation. A month after his diagnosis, I told my father about DPS and how it might help him. I brought...
  6. lgelb

    DPS study report

    In this month's Lancet Neurology
  7. tripete

    DPS - PEG Seurgon

    I had my visit this morning to discuss getting the DPS (Diaphragm Pacing System) installed. For those who do not know this is where they surgically place electrodes on your diaphragm to stimulate the muscle. Wires come out of the side of your stomach and attach to a small box that controls the...
  8. tripete

    Clinic Today 6-3-15

    Bad News; My seated FVC down to 68% from 85% my prone down to 48% from 67%, right hand strength and left leg down approx 25%, clinic visits moved from 3 months to two months. Concern about my neck and chewing. Good News; FVC now qualifies me for DPS (Diaphragm Pace making System), they did...
  9. Graybeard

    DPS, Diaphragm Pacing System

    When I learned of this trial last July, my FVC was 70. The recruiting info said they were looking for PALS with 45-50%, so I waited until Oct to enter the trial. FVC was 50% by then, and to my shock, my phrenic nerves to my diaphragm were dead, so no DPS for me. I didn't appreciate what I...
  10. tripete

    Webinar on Diaphragm Pacemaker

    There is a webinar scheduled for today at 4PM eastern time on the Diaphragm Pacing System To register go here: https://attendee.gotowebinar.com/register/5494824017281538818 "Dr. Jeremy Shefner (Barrow Neurological Institute) and Dr. Jonathan Katz (California Pacific Medical Center) will...