lakelover
Active member
- Joined
- Sep 5, 2011
- Messages
- 54
- Reason
- CALS
- Diagnosis
- 08/2011
- Country
- US
- State
- NC
- City
- Greensboro
Ralph's progression started in his left arm. He can still walk, very limited use of his hands and arms. still able to swallow and speak although his voice is getting weaker by the day. His breathing is what is going so fast. So fast that in 4 months his FVC went from 84% to 52% and his MIP went from 76% to 40%. He wakes up in the middle of the night unable to breathe so now I get very little sleep. The doctor just wrote us a prescription for a BiPap three weeks ago but his breathing is declining on a daily basis. He can barely say two words without taking a breath, barely able to cough, unable to blow his nose. He is having a difficult time using the BiPap because of the settings so we had to go back to the ALS Clinic today to have them reset. I am having a very difficult time dealing with this. Here I am waiting on him to lose his ability to walk, to swallow and all of the use of his hands and arms and just never thought his breathing would be the next to go. Three weeks ago he was still working but was extremely exhausted at the end of the day. Has not worked since Friday before Christmas. Christmas Eve I spent the night walking the floor stressed out because he was having difficulty in breathing. He has tried to go back to work twice but lasted only an hour because he was so exhausted. How is this happening? This is so scary. I hate this disease!
Wanda
Wanda