Drugs and PT for PBP?

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!

It is a struggle to be positive when you are losing control over your body. You won't be positive all the time. But most days, you'll probably want to seek out the information that will help line up your decisions with your core beliefs.

PT, as far as we know (it is a subject of current studies), doesn't delay progression of the nerves dying but helps preserve circulation, range of motion/flexibility, and reduce the pain of immobility/contractures. Massage and exercise can also help preserve skin integrity and prevent/reduce swelling.

So it is still worth it to see what PT has to offer. Showing your husband how to do exercises that you may not be able to help with later on, for example, is a distinct benefit. They can also do some direct therapy in your home at this stage.

As for drugs, you are eligible for riluzole, Nuedexta and possibly edaravone as far as I know, without knowing all your medical conditions and the logistics that IV infusions would require there. I would certainly ask the neurologist(s) you trust the most to walk through the pros and cons with you.

Best,
Laurie