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Old 10-19-2009, 08:18 PM   #2 (permalink)
t34gib
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Registered Member
Join Date: 2009
City: Fort Pierce
State: FL
Country: USA
Diagnosed: 12/2008
Posts: 133
t34gib is on a distinguished road
Default Re: Just found out best friend has PBP

Well, if you believe what you read online, the prognosis is 2-3 years after diagnosis. But Don't believe everything you read. Every case is different and there are no concrete answers. Beth and Rose may be able to give you their stories. I hope they see this.
I was dx in Jan with PBP, but looking back I have had symptoms for at least 18 months previous to that. I began with speech slurring and some difficulty swallowing. I too, have to repeat myself. I have an IPhone and a computer that I can type and it will speak for me. I am still working full time and just starting to have problems eating. It is getting difficult and soon I will ge the peg for feeding. I have noticed my pulmonary function getting lower but there are things to do.
I don't know if your friend has any limb involvement but I do not yet have any. Dr. says i am a slow progressor. But you know how fast time flies.
I don't have any words of wisdom other than, support your friend and stay close. Give her a safe place to cry or just dump her feelings on. She will be going up and down and then back around for awhile. It is a very hard thing to hear and to accept.
She has a lot to live for and I know that having purpose is important.
Has she gone to an ALS clinic?
I am sorry for your freind's diagnosis, but I am sure she is lucky to have you around.
NancyS
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