Graybeard
Distinguished member
- Joined
- Sep 24, 2014
- Messages
- 440
- Reason
- PALS
- Diagnosis
- 12/2013
- Country
- US
- State
- Ca
- City
- Surf City
When I learned of this trial last July, my FVC was 70. The recruiting info said they were looking for PALS with 45-50%, so I waited until Oct to enter the trial. FVC was 50% by then, and to my shock, my phrenic nerves to my diaphragm were dead, so no DPS for me.
I didn't appreciate what I missed. I have been sleeping well with a bipap for over a year. Now I use it most of the day as well. I struggle to breathe enough just sitting at the keyboard without it. Making it portable means a ten pound battery pack and the bipap and hose and cables.
The DPS is a ten ounce box with four wires to the corners of the diaphragm. It is use as needed, like the bipap, except it uses the diaphragm muscle to breathe, instead of an air pump. Now I can see their claim of up to two years extended life.
I feel I cheated myself by not trying to enter when my FVC was 70%.
I didn't appreciate what I missed. I have been sleeping well with a bipap for over a year. Now I use it most of the day as well. I struggle to breathe enough just sitting at the keyboard without it. Making it portable means a ten pound battery pack and the bipap and hose and cables.
The DPS is a ten ounce box with four wires to the corners of the diaphragm. It is use as needed, like the bipap, except it uses the diaphragm muscle to breathe, instead of an air pump. Now I can see their claim of up to two years extended life.
I feel I cheated myself by not trying to enter when my FVC was 70%.