- May 1, 2017
- Loved one DX
Thought I would give status on my husband for those few with this ALS type. After 10 months of tests, his final diagnosis was July 2017. He is weakening and hasn’t left house for several months. Just better since breathing is very tough. He is on trilogy 18 hours a day. A blessing that he tolerates it, but mask irritates his nose. We use creams and have tried different masks. The one with a foam liner works best. He takes lorazepam twice a day to help with anxiety, and hospice has encouraged more low dose morphine. He uses a walker and can do stairs once a day. Good appetite and no pain. No bulbar symptoms, and just weakness in limbs. Can’t tell if weakness is because his breathing is so hard, or if limb involvement is increasing. Even at ALS clinic doctors say no one knows a lot and we just keep trying to see what works. He has no pain, so we are blessed in many ways with this awful disease. Just thought I would share status for those others who may be in similar stage. Blessings to all!