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Old 02-13-2012, 11:06 AM #1
djvallejo djvallejo is offline
Junior Member
 
Join Date: Aug 2009
Location: Tampa, FL
Posts: 31
10 yr Member
djvallejo djvallejo is offline
Junior Member
 
Join Date: Aug 2009
Location: Tampa, FL
Posts: 31
10 yr Member
Default Looking for info

Hi Everyone,

I am djvallejo's wife, Alison. It has been quite a while since my husband and I have been on the board so I hope you don't mind the intrusion. He is doing quite well on Mestinon only and we are very thankful for the improvement he has had. We sincerely hope you all are doing well also.

My reason for this post is to gather info - if you are willing to share. I am a former speech-language pathologist and have been asked to guest lecture at a local university on MG and its effects on the patient and caregiver. If you don't mind answering any (or all) of the these questions, I would greatly appreciate your input since my husband is my only source. Any info you provide will be kept confidential. My hope is to provide the graduate students with information that will assist them as they enter the workplace and also help them to see their patients as more than just another person on their caseload. Sometimes the universities fail to stress that there is a "real person" under all of the symptoms!

Have you experienced any speech or swallowing difficulties and how has it affected your daily life? How do you compensate for your limitations?

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?

Did a speech therapist assist with diagnosing or referring you to a doctor who could diagnose your MG?

How has your ability to work been affected by your MG? (Specifically interested in speech or swallowing issues but all info is appreciated)

How has your social life been affected? (Same as above)

Thank you all for any info you are willing to share. Even though we are not on the board often, please know that my husband I travel on this journey along side each of you...
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