Respiratory Onset- Update

[Chrismarie]

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!

 

[mrsharris]

my dad was diagnosed with als last May initially they thought it was bulbar onset as he had some minimal bulbar issues but the bulbar weakness has not progressed at all in the last year where his breathing has rapidly deteriorated so now they believe it is respiratory onset.
We have found the following to be helpful for my dad.
- use a motorised wheelchair instead of a walking aid, it allows him to have more freedom and get fresh air while not expending too much energy. Took my dad a while before he agreed to a wheelchair but it has changed his life for the better.
- morphine is your best friend. Dad uses liquid morphine and slow release it helps his breathing and energy levels immensely.
- Get out in the fresh air. on the days that my dad doesn't leave the house he needs to be on the NIPPV for about 20 hours a day but when he is out in the fresh air he can go a lot longer without needing it (but we have a portable one so we always make sure its with us just in case)
- high calorie supplements. Since his weight has dropped dramatically due to the strain on his breathing my Dad needs to take lots of extra supplements in order to maintain his weight.

hope this helps xxx

 

[Chrismarie]

Thank you, Mrs. Harris. We are in similar place. Yesterday my husband sat outside for first time in months. He enjoyed that a lot. Hope you and your dad have good days together. Thank you for sharing.