Idaho2790
Distinguished member
- Joined
- Dec 22, 2017
- Messages
- 150
- Reason
- PALS
- Diagnosis
- 01/2018
- Country
- US
- State
- Idaho
- City
- Leadore
I was diagnosed with PBP a year ago this week. I frequently check in and read most of the posts for the day. It just dawned on my husband and I that none of the four neurologists I have seen have mentioned physical therapy or drugs that might delay the progression of this beast.
Until about two months ago I didn't even think of it because I had no problems with my limbs. I only found that my speech and swallowing were the biggest things to be non-existent at this point. Since before Christmas I find that I can no longer walk without a cane or walker. I have difficulty getting in an out of chairs.
When at the ALS clinic in November, my breathing was becoming a problem. I was given a BiPap and a cough assist. I'm afraid I haven't been using them on a regular basis because the saliva problem has taken over my life. I'm scheduled for Botox the end of the month which hopefully will help.
When initially diagnosed, I was told that it was entirely possible that nothing more would progress since I was in such good health other than the ALS. I'm now floating the idea in my head that because PBP is usually a rapid health issue, maybe exercise and drugs are just not worth the effort.
I'm trying to be very positive but there are times when I wonder if it is all worth it!
Until about two months ago I didn't even think of it because I had no problems with my limbs. I only found that my speech and swallowing were the biggest things to be non-existent at this point. Since before Christmas I find that I can no longer walk without a cane or walker. I have difficulty getting in an out of chairs.
When at the ALS clinic in November, my breathing was becoming a problem. I was given a BiPap and a cough assist. I'm afraid I haven't been using them on a regular basis because the saliva problem has taken over my life. I'm scheduled for Botox the end of the month which hopefully will help.
When initially diagnosed, I was told that it was entirely possible that nothing more would progress since I was in such good health other than the ALS. I'm now floating the idea in my head that because PBP is usually a rapid health issue, maybe exercise and drugs are just not worth the effort.
I'm trying to be very positive but there are times when I wonder if it is all worth it!
Last edited by a moderator: