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Where's shirley??!!

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Old 08-31-2006, 06:56 AM #1
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Default Where's shirley??!!
I've missed her!
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~Alicia~who feels that four kids with a mitochondrial disease is like patching the Titanic with a bandaid at times, but I say.."SHUT UP, Sit Down and ROW"...
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Old 08-31-2006, 07:26 AM #2
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Hi,
I am Shirley. I think I am the only Shirley that usually posts on this forum. I do not recognize your name.
Shirley
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Old 08-31-2006, 07:31 AM #3
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It's Alicia
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~Alicia~who feels that four kids with a mitochondrial disease is like patching the Titanic with a bandaid at times, but I say.."SHUT UP, Sit Down and ROW"...
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Old 08-31-2006, 07:32 AM #4
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Oh hi Alicia. Good to hear from you.
Glad to hear you have a good doctor, but sorry to hear about the muscle troubles.
I finally found a neuro at a Centre for Movement Disorders in Toronto that recognized I am having a problem and my daughter has inherited it. I have been having a miserable time and my doctor kept treating me for an anxiety disorder and the neuro said that was a crock and put me on Tegretol. We will see if it helps. I am just getting started. He wants to hear from me in a few weeks and see me again in 8 weeks.

How are the kids? Jen is going into grade 12, I can't believe it. School starts Tuesday for both of us.

Glad you are back!
Shirley
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Old 08-31-2006, 07:38 AM #5
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Im so happy to hear you have found people to listen to you. I've decided listening is 90 percent of the battle! If a doc cannot listen to his patients, your doomed. They may not know everything about a particular disorder, but if they have the power to listen, you have the ball in your court! Toronto, eh? Sounds COLD!
Kids are doing well. Started back to school a month ago...Lauren is in 10th gr, rob is in 3rd and the twins!!!!! They started kindergarden! holy smokes! My house is so quiet! Overall, 3/4 are doing ok health wise. Lauren has developed some problems with her heart...( septal wall thining and a borderline ejection factor...) but we are headed to CCF next month for some more input on that. She's growing up, and we are getting ready for a sweet 16 shindig, first weekend in November! Cant wait!
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Old 09-14-2006, 11:52 AM #6
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Talking Hey, Alicia!
Nice to see you here .
Thanks for the update....but how are YOU doing?

mrsD
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Old 09-14-2006, 01:12 PM #7
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Mrs~D~ My fav!

Im hanging in there~ Headed to Miami in a few weeks for ME! Im getting weaker all over...but will be working on the heart stuff when I go down there. Im very excited to be going.finally~ have ME time!

Im happy to see you had a great vacation. Sounds like just the thing we all need. A cabin with no thoughts of phones, electric...I can handle that one!

How have YOu been? you've been definetly missed. Im glad to have access here. It's great to see some familiarity once again!
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