Monarch103
New member
- Joined
- Jan 13, 2022
- Messages
- 8
- Reason
- PALS
- Diagnosis
- 04/2020
- Country
- US
- State
- NY
- City
- Mt. Vernon
Hello.
I’m new to the forum. It’s nice to have a place where others can relate to your situation and give support.
Diagnosed bulbar palsy April 2020. Retired in May 2021 because of inability to speak. Still mobile albeit slow go though with left hand and left frozen shoulder.
Got a PEG tube July 2021 bc couldn’t swallow.
I’m asking because I haven’t read anywhere of anyone having bolus feeding problems like me!
My syringe refuses to stay in PEG port. It slips out. Both port and tube have been replaced. Right now I have syringe taped to PEG tube with duct tape. Yeah. Call me McGuyver! Add this to the list my various doctors say we’ll hey back to you soon.
If anyone has had this issue and over come it please let me know!
Thank U much!
I’m new to the forum. It’s nice to have a place where others can relate to your situation and give support.
Diagnosed bulbar palsy April 2020. Retired in May 2021 because of inability to speak. Still mobile albeit slow go though with left hand and left frozen shoulder.
Got a PEG tube July 2021 bc couldn’t swallow.
I’m asking because I haven’t read anywhere of anyone having bolus feeding problems like me!
My syringe refuses to stay in PEG port. It slips out. Both port and tube have been replaced. Right now I have syringe taped to PEG tube with duct tape. Yeah. Call me McGuyver! Add this to the list my various doctors say we’ll hey back to you soon.
If anyone has had this issue and over come it please let me know!
Thank U much!