After the holidays would be great. I'm hoping to also meet up with some of the other local folks...it would be great to have something were we could all meet each other. Everyone's so busy, especially this time of year! You can email me at firstname.lastname@example.org or call me at (530) 848-4991, any time.
I also work on campus, so I'm pretty much "local" all the time.
My family & I also live (and work) in Davis. It sounds like you are such wonderful, involved grandparents to your grandchildren! I would love to meet you, sometime. My son, Joseph, just turned 13 and was diagnosed 7 years ago. He also sees Dr. MacDonald in Sacramento.
Hi Cathie. I am still trying to figure out this DMD website. Thank you for your reply, as I am so anxious to have others to communicate with. It sounds like you have more than your plate full with your own health issues and all. As my daughter said to me, as much as I am there for them, it would be great for me to have other grandparents to talk to, and she is so right. I don't know where to begin. I am so blessed in so many ways, but that doesn't stop me from being so sad and so angry about "my boys". It's a struggle, as you well know, and i welcome a friend to 'talk' to. take good care of yourself! laurie from new hamp[shire
I just read your note to all us carrier moms, and wanted to give you a better understanding of CPK for us moms. I have talked to my friend, a research scientist (PH'D)at UCLA for DMD. She is brilliant. Even though us carrier moms have a normal CPK (most often, than not), we can still manifest symptoms in 10-15% of us. In talking to a Neurologist last year at an MDA Summer Camp, we have to have a test for our two X's (since hat is why we are usually protected as we have the extra X where our boys do not. We are X X and they are X Y. If one of our X's is no good, that is where the symptoms come in. Regardless, we must have an echo every 3 - 5 years. Hope this helps some. Thank you for your post. I am so glad to have you here at PPMD Community. You are a blessing.
Hello Cathy, Welcome to PPMD;
Your grandson is a sweetie- you are a lucky Grama!
See my page for my story- as my son is nearl;y 32 yrs old.
I am very interested in your weakness and diagnosis as my sister (who is also a carrier) has had some sudden increasing symptoms that need to be diagnosed. Also how did you find and use the Global page on your site?
Thank you for being a supportive and involved Grandma. Every child with DMD should have one of you in their corner!
In health and happiness,
Rebecca in Berkeley
mom to Milo, 8 w/DMD, and Jules, almost 5, w/out
Hey Cathie! I go to the "Add Photos" icon underneath where my picture slideshow is playing and click on that...there is a green plus sign). It takes you to a menu that has a lot of boxes with "browse" next to them. Click on the first "browse" and it will let you find your picture folder on your computer, then just click on the pic you want to add. Keep doing that for each pic, then click on the "done" (I can't remember exact word). I can't tell if you have added your pictures to your "community box", or your "photo box". If you put them in the photo box, then you will have options to give them titles and also to have them displayed as a slideshow, etc. I have mine as a slideshow. When I first did it, I put them in the community box, but that seemed harder. Let me know if it doesn't work.