rosec
Distinguished member
- Joined
- Aug 2, 2012
- Messages
- 330
- Reason
- Lost a loved one
- Diagnosis
- 11/2009
- Country
- US
- State
- CA
- City
- Costa Mesa
My PALS was diagnosed almost 3 years ago. He got his feeding tube about 18 months ago. Initially he was asked to to come to the clinic once every 3 months. When we go, his vitals are taken, his breathing (FVC ?) is measured, then his neurologist or the RN (a very fine RN) checks his arm/leg strength. For the past year or so he has been asked to come every 2 months. He is not keen on going that often. His main reason is that there is nothing much they can do, so there is no point in enduring the hassles, like my having to take time off from work, and the general disruption of his routine, etc. We average about once every 4 months.