I see that no one has responded to your question. My son had DMD, but I know a few people with SMA. They have never complained of that problem to my...
There are, of course, many things this may turn out to be...It could be Bell's Palsey which is a virus of one of the cranial nerves. Sorry, I forget which one....
JSavant99@...
Dec 1, 2008 10:55 pm
21609
Sorry, missed the original post, having trouble with email lately. Anyway, MJ, age 20, SMA 1+ has had a couple times where her smile is gone...especially...
Thanks for the replies to my post. I ended up deleting it because after talking to him more in depth about it, I found out that it is a "twitching" and not a...
Hi everyone: No, not a rambling update or deep thoughts of mine for today, just a regular update. First of all, thanks everyone for visiting and signing my...
Hi all: Just thought I would update again, since I kept forgetting to this past week. After calling the hospital to see if my culture was done and...
I would like to wish a Merry Christmas to all who are in this group because they are affected by some form of neuromuscular disease. I pray that God's hands...
Thank you Tod and ditto to you, may God continue to bless your spirit and help you keep the faith, he is going to give the wisdom to the doctors for the...
hello, it's just after 9am and snowing a lot here in Barstow, Ca. in the high desert, very cool and wish i had my cam now lol. Sticking good on the road now in...
hello, it's just after 9am and snowing a lot here in Barstow, Ca. in the high desert, very cool and wish i had my cam now lol. Sticking good on the road now in...
Snowing in the desert! I bet it is very pretty. I never responded to you before, but I enjoy your stories of how your days go. Rosa seems like a jewel,...
I need to get better with posting and back to every day and will next year for sure. Been doing so so here and getting by the best i can. But i do stay upbeat...
That's great my friend. Staying upbeat is truly the best policy, even though I do have my days and I'm sure you know how that goes. I'm glad to hear you are...
Greg, I didn't think California got snow! We got 15 cms, my 15-year-old spent most of the weekend building his first ever outdoor ice rink in the back yard,...
Greetings from the lovely little city of Waynesboro. Not much happening around here today. We went Christmas shopping yesterday at the big bad Wal-Mart. It...
Greetings to all! My primary purpose for writing is to ask if anyone has any information on SMA and strokes. Angie Wright (SMA 2) suffered a stroke in April...
Did you see the article where a family in Minnesota sued the drug company making PTC 124 because they would not allow the 17 year old to participate in the...
Kmmx2@...
Dec 18, 2008 6:46 pm
21626
Hello all, Hope you are all doing good and staying warm. We had a lot of snow on Wed. , 7 inches on out part of town and my mom and sisters got a lot more and...
Many hugs and much love back to you Gregg...thanks for the post...you really motivate..and God has you here for that purpose, its a gift!.. Reina ... From:...
Gregg..my daughter always ask how you are doing..and said she sent you a Christmas card...so if you got one from Natalie..thats my daughter....blessings Reina ...
MERRY CHRISTMAS AND HAPPY HANNUKAH!  May you and your families have a peaceful, and happy holidays.  Peace to all, John  There is no cure for birth and...
Hello Everyone: Well another week has come and gone. I can’t beli eve Christmas is Thursday! I’ll be heading to GJ’s for 2 weeks tomorrow and you know...
Hello all, hope you all had a great holiday long weekend and doing the best you can now and staying warm. I got Rosa bad cold the other day after looking like...
Greg... i hope you're feeling better very soon. I love how upbeat and positive you always are. You're an inspiration. Today is my son, Kevin's (CMD) 21st...
MzBet@...
Dec 30, 2008 6:06 pm
21636
I always try and stay up beat and happy, a bad mood does not help anyone here. I am very sick now and trying about every thing i can i have here and mom is...
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