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Old 02-14-2012, 10:15 AM #5
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jana jana is offline
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Join Date: Apr 2009
Location: Tenn
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15 yr Member
jana jana is offline
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Join Date: Apr 2009
Location: Tenn
Posts: 554
15 yr Member
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Have you experienced any speech or swallowing difficulties and how has it affected your daily life? How do you compensate for your limitations?
Yes, I have had both -- the speech difficulties are CONSTANT -- the swallowing difficulties are mostly when I'm trying to swallow pills, when I'm trying to swallow ANYTHING late at night, and when I'm in exacerbation. See below for compensation techniques.

Were you seen by a speech language pathologist? Any positive or negative experiences you would like to share? Therapy techniques they tried that did or didn't work?
YES, I was seen by a sweet, compassionate, and SMART young woman who spent a lot of time testing me and then explaining exactly what was going on. She then showed me techniques for swallowing (which I used SUCCESSFULLY about an hour later at a restaurant -- chin tucked over shoulder and swallow -- YAY!!) When she mailed me a final report, she included EXTRA materials about MG that she had researched after my visit. She even called about a month later to see how I was doing.

Did a speech therapist assist with diagnosing or referring you to a doctor who could diagnose your MG?
No, I had already been diagnosed.

How has your ability to work been affected by your MG? (Specifically interested in speech or swallowing issues but all info is appreciated)
I am no longer able to work due to speech issues.

How has your social life been affected? (Same as above)
I have always been more of a listener than a talker, so it hasn't been a BIG problem. But, when I DO talk (I can say a couple of sentences, usually) -- I tend to slur badly. My family and close friends can USUALLY understand me -- I tend to keep paper and pencil close at hand, just in case. I also do a lot of hand "motions". It also helps that I am NEVER left alone. A family member or close friend is ALWAYS with me (due to possible serious breathing problems -- MG "fun", ya know?) -- so, the people who are MOST likely to understand what I am trying to say are close at hand. Life "ain't" so bad!
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