dartman
New member
- Joined
- Sep 27, 2012
- Messages
- 8
- Reason
- PALS
- Diagnosis
- 09/2012
- Country
- US
- State
- CT
- City
- West Hartford
I was told by doctors and neurologists that I have bulbar palsy, restrictive bulbar palsy, als onset bulbar palsy and progressive bulbar palsy. I wish they could get together and call it one thing. Is there a difference? The neurologist that specializes in MND called it PBP so I guess I'll go with that.
I have been told to get a living directive, check your life insurance and medical insurance, have a will, call the VA and fill out the forms since I'm a veteran, get in touch with the SSA about long term disability, medicare, Medicaid, look into SLP for speech ASAP, be proactive with the doctors and anything regarding my care, blah blah blah.
I'm overwhelmed, depressed, worried about my family (especially my 13 year old daughter) and worried I will lead my family into bankruptcy if I lose my job (or the ability to do my job).
So far my speech is getting worse by the day, along with swallowing. Today my breathing got very labored without any exertion. I had an EMG in September and it was OK. Everyone seemed surprised and I was urged to do a follow up EMG in early December. So far no signs of it progressing to full blown ALS, so I am still working. They say they will work with me on the speech to keep me at work for as long as possible, but I work in sales and project management so its getting tough.
I'm sorry if I'm in the wrong place. Is it OK to post here if I have PBP? Some say its the start of ALS and some say its separate but can lead to ALS.
As I said, IT'S ALL NEW TO ME!
I have been told to get a living directive, check your life insurance and medical insurance, have a will, call the VA and fill out the forms since I'm a veteran, get in touch with the SSA about long term disability, medicare, Medicaid, look into SLP for speech ASAP, be proactive with the doctors and anything regarding my care, blah blah blah.
I'm overwhelmed, depressed, worried about my family (especially my 13 year old daughter) and worried I will lead my family into bankruptcy if I lose my job (or the ability to do my job).
So far my speech is getting worse by the day, along with swallowing. Today my breathing got very labored without any exertion. I had an EMG in September and it was OK. Everyone seemed surprised and I was urged to do a follow up EMG in early December. So far no signs of it progressing to full blown ALS, so I am still working. They say they will work with me on the speech to keep me at work for as long as possible, but I work in sales and project management so its getting tough.
I'm sorry if I'm in the wrong place. Is it OK to post here if I have PBP? Some say its the start of ALS and some say its separate but can lead to ALS.
As I said, IT'S ALL NEW TO ME!