For Shatzie

[mammaberger]

Shatzie, it sounds like you are in a great mind set. Lovelily it seems as if als is not the only devastating neurological disease. From what I understand most neurological diseases are not that treatable, they are going to take there course over time despite treatment als,poly,aps,ms etc. I think we have to remember als is not the only terminal devastating neurological illness.

 

[vmd]

Shatzie:

I am curious. You state that you have some slurring issues. Considering you are a teacher, how has this affected your teaching? I ask because I lecture to my classes and I am concerned about a decrement in my ability to teach, given some of my speech problems.

 

[Shatzie]

At this time the amount of speech difficulty is mild, but now nearly everyone I talk to can tell there is something wrong. The first time I went to my neuro in November, he said he couldn't tell there was a slur, but a month later he could. On a good day I sound like I have a lisp. On a bad day I sound like I have had a few drinks or a strong pain pill. Sometimes when I am teaching, I go to say a word and all that comes out is "blaah". I teach second graders and told them and their parents early in the school year that I am having speech problems and I am seeking medical help for it. Whatever the official diagnosis is, I plan to teach as long as I can. I feel like it would be possible even without speech, either with an electronic aid or teaching older students and writing most of the lesson. My principal is supportive and has told me she will do whatever she can to accommodate me.

 

[vmd]

I'm glad to hear your principal is so cooperative. I probably have the option of teaching internet classes, if I were to lose more speech functions.

 

[siuska]

Shatzie,
i am so sad to hear the news and wishes and prayers for you at Baylor...have they totally ruled out myasthenia gravis?

 

[Shatzie]

MG was what I originally thought I had, but according to my neuro, my extensive blood tests have ruled that out.

 

[Jamiet]

Sometime, MG is sero-negative, meaning it does not show up on Bloodwork.

Hoping for a miracle!

Rgds,

jamie

 

[siuska]

Bummer...jeez...i was hoping it was ME if you had to have anything...have you checked out www,als.net?
it's a non-profit organization who's sole purpose is to concentrate and find a cure for ALS...there are forums there that can help you with basic answers. There is also information on drugs/ research/ practical things...i have become a volunteer in fundraising (hard for an artist!). i am also interested in the research that is going on.
I found out there is no good data/statistics on PALS done at any significant level...i was really confused about this...because, this is usually done for any disease- it helps to identify a cause...i wrote about this in the forum and someone let me know there was a bill to obtain such data, but TOM COBURN is the sole block to this passing...He is from OKLAHOMA...i thought you should know this because you live in Oklahoma and your rep isn't repping you...i have a link to this forum Q and A


i am still waiting for answers too...i had an abnormal EMG with atrophy...plus i twitch and cramp so i am scared, but i found for me, being as proactive and looking at research helps.

 

[siuska]

sorry, don't quite understand why link to forum didn';t appear in post.
http://www.als.net/forum/topic.asp?TOPIC_ID=2314