Recent content by deana

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    North Carolina Walk

    Mary, Oh what a wonderful day Saturday was. The walk in Winston was this past Sat. and the out pouring of people was amazing. There was close to 1300 people there and they raised 97K! It was so great to see so many people come together to walk for this disease. I have attend other walks...
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    North Carolina Walk

    Oh Mary, what a wonderful story! What a blessing to have met her! I am looking forward to this walk. Raising money has turned to be a challenge, but we will do it. I hope you all enjoyed the walk you did! Blessings!
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    North Carolina Walk

    Just sharing this walk, in case there is anyone from NC interested. I am sure you may already know about it, just wanted to put it out here. Winston-Salem Walk to Defeat ALS®: Winston-Salem Walk
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    Layman's Interpretation, please

    Notme, That makes perfect sense. I had heard that too low was dangerous, did not realize the same effects could be if too high. We told the neuro this past Thursday about the cramping, but he did not seem to concerned. Actually, kind of like he did not even hear it. But, that could be me...
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    Layman's Interpretation, please

    Glimmer, thank you so very much! I will ask about these meds! I had not thought of magnesium, had ask if he could take potassium, but we were told a HUGE no due to his blood results.? Confusing to me. I (as many of other) have learned some wild things on this ride about how complex the...
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    Part 2 :-) The neuro says the next step is a speech therapist to find out which muscles are...

    Part 2 :-) The neuro says the next step is a speech therapist to find out which muscles are weak, he states it is palatal weakness and the SFEMG shows weaking in the facial muscles. Jeff tried to whistle to the Andy Griffin tune the other day, and he is no longer able to do that. So...
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    Good morning to you, Rose. You are so thoughtful! You sound just as sweet as your picture...

    Good morning to you, Rose. You are so thoughtful! You sound just as sweet as your picture portrays you! Yes, he went back yesterday. The neuro says that he has taken the wrong route of looking for MG. With the failed effects of Mestinon and Prednisone, symptoms of MG would have shown some...
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    Layman's Interpretation, please

    Update: We just returned from the Neuro and he (the neuro) is taking MG off the board, he indicates after almost 6 weeks of the prednisone, something should have let up. He has not taken ALS off, but says it is not likely since Jeff has no strength loss since his last appt. in October. The...
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    How are you, Rose? Thought about you and then it hit me, I could communicate with you when I am...

    How are you, Rose? Thought about you and then it hit me, I could communicate with you when I am not asking a 1000 questions!
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    Comment by 'deana' in media 'twilight trail run 060311'

    Looked through your photos...you have a beautiful family. Just beautiful!!! Your girls are precious!!
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    Glimmer, You have to be one of the sweetest people, your messages have a uplifting beat to them...

    Glimmer, You have to be one of the sweetest people, your messages have a uplifting beat to them. I hope all is well your way. I am sending you much sunshine too!!
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    Layman's Interpretation, please

    Toto and Old Dog, thank you both so much for the wishes of luck. I pray we will gain some knowledge Thursday. Old Dog, he has shown negative on three blood test for MuSK and Achr. I feel that is where much of the confusion is coming from for the neuro. The negative blood work I understand...
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    Layman's Interpretation, please

    Awe, thank you momap! That was so nice to find! Bless you!
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    Layman's Interpretation, please

    Yes! Thank you, Wright! I am sorry I have yet to thank you, we were out of town. I came on and read via my phone, but due to signal weakness I was not able to show my gratitude. Thank you so much. We go back to neuro this Thursday, so I am sure more test will be on the way. Thank you all...
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    Layman's Interpretation, please

    Thank you all so very much. I have read on here that Wright is the one to "go to" for the reading of EMG's, I just did not want to be overly presumptuous by going straight to him. Thanks again to each of you! Toto, thank you for posting on his wall, it relieves my nerves. Not knowing him...
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