ALS News Today Forums | Quaintance | Activity https://alsnewstoday.com/forums/members/quaintance/activity/ Activity feed for Quaintance. Sun, 19 Apr 2026 05:29:35 -0500 https://buddypress.org/?v=2.19.0 en-US 30 hourly 2 c1ab4288297809184e17bd9609d61281 Quaintance replied to the discussion What is most difficult for you? in the forum Living With ALS https://alsnewstoday.com/forums/forums/topic/what-is-most-difficult-for-you/#post-25309 Thu, 07 Mar 2024 22:11:31 -0600 Reply to What is most difficult for you?

By far the breathing and all the annoying equipment to help it like Bipap and the Cough Assist and suction.

]]> 09e924885538df585f156c7865b2d7c0 Quaintance replied to the discussion DPS is abbreviation for diaphragm pacing system . . . is anyone here trying? in the forum Research Topics https://alsnewstoday.com/forums/forums/topic/dps-is-abbreviation-for-diaphragm-pacing-system-is-anyone-here-trying/#post-25014 Sat, 23 Dec 2023 04:54:43 -0600 Reply to DPS is abbreviation for diaphragm pacing system . . . is anyone here trying?

The pacing system does not seem like it causes a natural breath, more like a gasp. Also, I wonder why nobody tries one of those turtle shell type chest cuirass negative pressure ventilators. No trach required. I like Bipap but it cuts into your ability to communicate.

]]> 246048566e6b640a3f59495f41bc5c5d Quaintance replied to the discussion Stem Cell therapy for ALS in the forum Using Our Forums https://alsnewstoday.com/forums/forums/topic/stem-cell-therapy-for-als/#post-25013 Sat, 23 Dec 2023 04:48:14 -0600 Reply to Stem Cell therapy for ALS

The documentary Gleason on Amazon is a gut wrenching story of a thirty something NFL player with ALS. You actually see him getting stem cell therapy. Very discouraging because his ALS progressed faster after the stem cells.

]]> 036947fd538b3840d5ec22f1c649ef35 Quaintance became a registered member https://alsnewstoday.com/forums/activity/p/21380/ Mon, 18 Dec 2023 14:10:15 -0600 1