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Kas1

New member
Joined
Aug 10, 2013
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1
Reason
Loved one DX
Country
US
State
RI
City
P
Hello,

I have never posted on something like this before, but I don't know what else to do. My Mom has recently been diagnosed with Progressive Bulbar Palsy, and I am just filled with questions, because she's too scared to ask them. Here's the shortest version of her story so far. This past Easter (April 2013) my brother asked me if I noticed that she was talking a little funny. I see her everyday, as she watched my small children, and I hadn't noticed. I then looked for it, and I could ever so slightly hear a slur. We thought she was losing her hearing or had a mild stroke. She finally went to the Dr. in June, as her symptoms worsened, and was diagnosed with PBP. It is now almost 5 months since I first noticed her speech, and now I can hardly understand her. She doesn't want to talk to anyone, because it's almost incomprehensible. Here are some of my questions. What is the difference between PBP onset ALS and just PBP? Where her speech has so rapidly deteriorating, does that mean that it will progress to other areas sooner, or could it just stop at her speech? She currently doesn't have any issues with eating or swallowing, but she only eats soft foods anyway. Thank you all so much in advance for any help that you can give me! I am really getting scared by reading everyone's progression. Any answers will help me greatly!
 

KLHF

New member
Joined
Aug 30, 2013
Messages
8
Diagnosis
08/2012
Country
US
State
Alabama
City
Blountsville
Trying to figure out how this works. Wrote two replies, both disappeared. Just noticed the box at bottom. Hadn't scrolled down far enough.
 

KLHF

New member
Joined
Aug 30, 2013
Messages
8
Diagnosis
08/2012
Country
US
State
Alabama
City
Blountsville
OK that worked. PBP is considered a form of ALS. I read of a study where 87% develop full blown ALS. She may not have noticed eating problems since she is eating soft foods. I'll write more tomorrow. It's late.
 

vickim

Very helpful member
Joined
Sep 20, 2012
Messages
2,255
Reason
Friend was DX
Diagnosis
03/2012
Country
US
State
MO
City
aaaa
There is tons of information here. Maybe you and your mom could look together and learn together. It might help you both with your fears. There are some very smart and wonderful people here. Sorry you had to come to this site but welcome. Jump in when you are ready.
 
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