View Full Version »› seeking info on PBP
lauretta
11-30-2006, 01:37 PM
My husband just got diagnosed with PBP and we are trying to find out as much info as possible. Its very hard to understand how this came about and what caused it. He started slurring his words about 1yr ago but was under a lot of stress taking care of his dying mother. After she passed, we thought it would get better but it did not. We have been to 3 neurologists to finally get this news. He is having problems swallowing with extra saliva and drooling problems. He is working with a speech therapist and we are revisiting an ENT specialist. Is there anything else we can do or try? Does anyone know how long this progresses or is everyone different. By the way, he is 56 and we think that last year he might have taken a spill on the ice and hit his head-is that what could have started all this? Is stress a factory in all this?
Lots of questions, so if anyone can help, I would appreciate any comments about doctors or clinics in the PA area.
Thanks.
Hi Lauretta. If you look back through the forums you will find a surprising number of people with different motor neuron diseases that have suffered different head and body trauma. Others have told of symptoms starting after bouts of extreme stress. I personally think these both might have something to do with it as well as environmental toxins. No researchers have put a definite tie in to it but they are working on it. We are all very different in our time lines for the progression of the disease but bulbar symptoms do usually happen faster. Saying that though with the information that we also have people on the forum that have had bulbar symptoms for 4 and 5 years so don't give up hope. We have a few members form PA so hopefully they will see your post and offer info on clinics there. AL.
lauretta
12-02-2006, 11:29 PM
Al,
Thanks for your words of encouragement and I will go back and read thru some of the other postings, Its just very hard to read about what could happen down the road. i know for sure I'm a not dealing with this very well. I trying to keep face.
Lauretta
Without getting into specifics Lauretta, are you getting any help? This disease is sometimes as hard or harder on the caregivers. Have you registered with the ALSA or MDA? They have support groups and they are not just for patients. Everyone needs a little help and support to deal with this. Don't ignore yourself. Keep yourself well. AL.
lauretta
12-06-2006, 11:07 AM
Al,
How do I register on either one of these groups? I really thought this was my support ?
I am confused but willing to try and talk to anyone at this point.
Thanks
Lauretta
Hi Lauretta. We can be your support if you'd like but if you wanted check the ALSA website for the number of the ALSA or MDA office nearest you and call them and ask to be registered. I have no idea where your county is in PA so can't look up the number for you.
There is an ALSA Chapter in Ambler and one in Philly. Look them up at www.alsa.org and click on the in your community link and then look for PA chapters. Hope this helps. Let us know how you make out. AL.
Lauretta -
Use both supports. We're informal, nonprofessional, personal. The other is organized, professional, has resources, etc. Don't put all your eggs in one basket.
Liz
lauretta
12-18-2006, 10:50 AM
Al and Liz,
Thank you. I will look into a local group as well.
The visit to the ENT doctor did not provide us with any more help. He told us he has not seen any cases of PBP for awhile. He told us to continue doing what we are doing and if we need him, call. I guess I was expecting him to suggest some drug or other to help with the swallowing. He said as long as Bill has the gag reflex (which he does), he should be okay for awhile. He wants us to see a nuitritionist which Bill wants nothing to do with right now. I also got some info on Dynovox but have not had the courage to read about it yet. I am just trying to cope with Xmas and all.
Have a great holiday!
Lauretta
