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Sunnyflmom

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Joined
Nov 26, 2012
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24
Reason
PALS
Country
US
State
Fl
City
Orlando
I thought I'd introduce myself since I'm new here. My parents moved to Orlando a few years ago to be close to me (now we're all glad they did). Mom thought she had MS a year ago but turned out to be ALS. Her speech was slurred (people thought maybe she was drinking, which I read is common to sound like that). It took until last spring until they started doing tests which were not definitive until Oct. By that point, her speech and vocal ability was completely gone. I just installed Proloquo onto her IPAD but she is not receptive to alternative communication yet. It's almost like charades figuring out what she is trying to say (but not fun). She had chest congestion this past weekend. Her dr put her on anbibiotics but I'm not sure if that was the right coarse of action. Maybe the congestion is another symptom and not a bug to be treated with antibiotics. I'm going to suggest to my parents that we take a trip to the Tampa ALS clinic. I feel the need to have a team approach as well as a game plan. My mom welcomed me to her doctors visits back in the spring (they went up to NJ until Sept), but now that they are back mom went to some doctors by herself or only let dad go with her. I'm hoping they will let me back into the loop. I try to be unobtrusive at her visits but I also ask questions. They did not want to ask the dr about any prognosis which is understandable but probably can't be avoided forever. It's hard when the table turn to the child needing to be part of the caregiving team especially when my mom was always the one in charge.
 
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