pvale
Distinguished member
- Joined
- Apr 15, 2009
- Messages
- 106
- Reason
- PALS
- Diagnosis
- 08/2009
- Country
- US
- State
- NE
- City
- Lincoln
Notice to the left. Went to St. Louis today to Barnes-Jewish and saw my neurologist.
Diagnosis is now definite ALS, bulbar and limb onset. 2-3 yrs if I don't trache and vent.
Will have to go back shortly for a modified barium swallow test. And then we'll talk about getting a PEG fitted. Come back in three months. Went in and out in a wheelchair. FVC is 72%, so they want to get PEG fitted before it drops much lower.
So, here I am. I can still walk very carefully with a walker, but it wears me out if I have to go far. I'm using a Invacare Pronto M51 that I was given around the house right now. I've been measured, and insurance has approved a Permobile C400 with all the electric options, vent tray and Roho cushion. Stupid insurance co wouldn't approve a Quantum 6000 chair. Go figure. I hope I like a front drive chair, because this M51 is a mid-drive, and is helpless in my rough backyard.
BTW, is there anyone other than me that has a need to run 12VDC devices from the batteries on the chair? Insurance won't pay for it, but I can get a 24VDC-12VDC@20A DC-DC convertor for about $70. I've got a netbook that will run from 12VDC directly.
Perry
Diagnosis is now definite ALS, bulbar and limb onset. 2-3 yrs if I don't trache and vent.
Will have to go back shortly for a modified barium swallow test. And then we'll talk about getting a PEG fitted. Come back in three months. Went in and out in a wheelchair. FVC is 72%, so they want to get PEG fitted before it drops much lower.
So, here I am. I can still walk very carefully with a walker, but it wears me out if I have to go far. I'm using a Invacare Pronto M51 that I was given around the house right now. I've been measured, and insurance has approved a Permobile C400 with all the electric options, vent tray and Roho cushion. Stupid insurance co wouldn't approve a Quantum 6000 chair. Go figure. I hope I like a front drive chair, because this M51 is a mid-drive, and is helpless in my rough backyard.
BTW, is there anyone other than me that has a need to run 12VDC devices from the batteries on the chair? Insurance won't pay for it, but I can get a 24VDC-12VDC@20A DC-DC convertor for about $70. I've got a netbook that will run from 12VDC directly.
Perry