Status
Not open for further replies.

fifty5coop

New member
Joined
Dec 5, 2009
Messages
6
Reason
Loved one DX
Country
US
State
AZ
City
Tucson
I'm new to this forum but have been reading your supportive posts. I'm learning my way around the different forums, I posted on the PBP and the introduction forum already today but I'm not sure the best place to ask my questions. My brother was diagnosed in Nov of this year with PBP and he said the doctor stated ALS also. Is a PBP diagnosis the same an ALS diagnosis? The neurologist told my brother that his arms, legs, and lungs would eventually be affected...currently he has very slurred speech and difficulty swallowing. I have many more questions but wanted to ask this one first as he needs to have an ALS diagnosis in order to get any VA benefits, correct? We are all pretty freaked out right now, thanks for any input.
 
I have PBP and it is considered ALS with possible ALS. Although the Doctor says it is ALS there are distinct measurements one must meet to say definate ALS. I have no limb involvement at this time but expect it will someday move to the limbs. I am also slow progression so it is not clear if or when it will go to the limbs. For SS disability it will be determined to be ALS. I would think it is the same for VA benefits. Also, PBP is considered a terminal disease so I don't see why it would not fall into the same category. I don't consider it a terminal disease, I consider it living with ALS. I will do whatever I have to keep progression slow and live my life.
Nancy
 
Thanks for your reply Nancy, and I love your attitude about not focusing on ALS as a terminal disease and instead "living with ALS". I will learn more about his exact diagnosis when I fly back to Michigan early January to attend my brother's neuro appt. He lives alone but is considering selling his house and moving to Tucson to an apartment to be closer to family (that would be me). I worry about him, I hope he's ok being alone during this stage. He has increasingly difficulty speaking, swallowing, and is constantly clearing his throat. I've read some of your posts, how's your golf game going? thanks again!
 
Status
Not open for further replies.
Back
Top