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  • I am almost a year into this ugly journey and overall I’m coping fairly well. My biggest issue is the saliva that seems to control my life. Just passed my cherished 55 year class reunion because I couldn’t bear seeing all my old friends with a handkerchief stuffed in my mouth! I take 6 Ruboinol tablets daily and no help at all. Has anyone had the Botox injections? I go through no less than 5 men’s handkerchiefs daily!
    My speech and swallowing is rapidly deteriorating. No issue whatsoever with my limbs. Now, a little over two months later, I'm finding that my crying is increasing, my energy level is nil and none, and my speech and swallowing is progressing weekly. I understand that PBP is a fairly fast progressing disease and that the prognosis to live with it is significantly less than with a standard ALS. I am just moving from bed to chair it seems. I have not be sent for physical therapy or had any tests for breathing issues. I do have an appointment at the ALS clinic in San Francisco in early April and am trying to get my concerns in line. Since my personality has always be positive, this is something very new for me. I don't know whether to go in armed asking for something that no one can provide? Or if there is a drug or something that may slow down progression. I just can't bear being one of those 1 year to 18 months from diagnosis = death patients!
    It was good to meet you today. I'm glad that I realized you were from here on the forum. I knew as soon as you guys said you were from Idaho and went to USF.
    I began slurring my speech mid summer, ended up being referred to a neurologist in October who suggested that ALS might be a possibility and referred me to UCSF. Met with a neurologist there in December who agreed it was a possibility and referred me to the ALS clinic at UCSF. I met with a total of 8 people for nearly 6 hours including having an EMG test done. My exam showed a clean EMG except for my tongue. My speech has gotten worse as well as problems swallowing. I was diagnosed yesterday with Progressive Bulbar Palsy. We were told that because nothing showed in my limbs, I might be free of problems in that area anywhere from 2-5 years. We know that a peg and something to assist with communication will be lots sooner than that. My question is does that sound reasonable? When I look up PBP on the net, it sounds as if it is quickly over! Just looking to add to my information so we can plan our lives...
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