pbp

I was originally diagnosed with progressive bulbar palsy in January of 2018. At that time we were told that there was an excellent possibility of having several years before things really became troublesome. In April 2018 I had a PEG put in and speaking was no longer a possibility. My legs...

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...

Hi, I'm a realtively old member of the DIHALS forum, so I'll try to be as straightforward as possible to recap the basics: My father passed away from PBP at the of 56. No other family member had MND, and he encountered both head trauma and large amounts of diesel exhaust. I've had widespread...

Some says are wonderful , the next day is a nightmare .He has PBP and he is so disenfranchised from everything , decisions , and me.I will always love him , and stand by him , but I miss him so much. He show's no affection some days.He will try to tell me something , then becomes angry when I...

I was just diagnosed with Progressive Bulbar Palsy about a month ago. Was told by the ALS Clinic that my limbs were good and might remain that way for another year or two. Within this last month, though, I seem to have more of a problem breathing. This is more when I try to breathe through my...

Just received a written report of the EMG I had taken in late January. At that visit I was told that I was diagnosed with PBP. The report, however, says that although I was referred for a question of motor neuron disease, the EMG/NCS findings fall far short of electrical criteria for MND...

I was recently diagnosed with PBP while at UCSF. I have always considered myself a strong woman and I’m trying to continue to be mentally strong in spite of what is coming in my life. I find myself crying at silly things. If someone sends a card or text offering support, if they send flowers...

I am a 72 year old woman, diagnosed yesterday with PBP at UCSF. Was told that because my Emg only showed a problem with my tongue, speech and swallowing, i might have two to five years before losing muscle in my limbs. I understand might have a need for peg or other items to communicate. When...

My husband was approved for a 100% disability for ALS in August.The VA has been wonderful. We have been approved for a SAH grant.I would like to know what was important to you , if you had a remodel.What you wish you had asked for , or what you really didn't need.The whole process s...

Hi everyone, I wrote a couple of posts back in May after Dad's initial diagnosis but havent wrote anything since. Im having a bad day today so im hoping it might help. As I said my 63 year old Dad was diagnosed with MND in May but its only recently that it has been confirmed that he has...