Barbara writes: "I am most scared of the insurance companies and what they will do to my monthly rates." Barbara, (1) Contact your local Muscular Dystrophy...
Walking every day with my cane while traveling, I've been experimenting. (I don't usually use a cane at home). Traveling, the cane is a valuable signal device,...
Welcome, Barbara. Good to have you with us. Please come back often. You do not say where you live or even if you live in the USA. Also, you do not say what...
My wife, the retired pediatric nurse, says that this does not sound good and that Rebecca should be seen by a doctor and soon. Her pediatrician would be the...
Let's Chat Sunday Our regular times on Sundays are 2 PM and 9 PM Eastern DAYLIGHT Time in the USA. Here is how to get to the chat room: (Please note that you...
I notice that the entire link did not show up under number 1 below. I had to copy and paste the enitire URL ( http://client0. sigmachat. com/sc.pl? id=157560 )...
The problem with going to Rebecca's Dr is that even if he is a pediatrician he's clueless . There is real shortage of Dr's in St.catharines. I hopefully can...
I call it "The Gimp Factor". When I walk without a cane it seems that it does not register in people's minds that I am disabled. They see that something is...
Yeah, Amy, that's great and I enjoy being the recipient of such graciousness...as long as it is not overwhelming which it can be sometimes. Paul, the doubly...
Does Rebecca have FSH? Either way, I haven't heard of bowel involvement in FSH of any kind, so my guess would be it isn't related and so should be investigated...
I believe that one or two members here have Chron's Disease or have someone close to them suffering from this painfully debillitating disease. So here is an...
A regular appointment is for individuals who don't have immediate problems. If you phone your doctors office and clearly state that your daughter is severely...
Well, this is frustrating! Now I notice that there are spaces after the first two dots and the question mark. I had to delete those spaces in order to get to...
Paul, I am the former military member you are trying to hook this person up with, and I did answer the email you sent me a few weeks back on the subject. I...
What goes it the top determines what comes out the bottom. If the stool is a hard lump it will not move through the colon or be eliminated easily. So she needs...
I haven't talked to Dr.Tarnopolsky for a few month. He did mail a letter with Rebecca's diagnosis of FSHD and he stated to continue with the supports she...
Thanks, Phil. I have not heard from him again. Does everyone know that although our complete email addresses are not shown, email can be sent to us by...
Well, be pushy with your doctors. This is not necessarily an issue related to FSHD, it may well be some other infant related bowel disorder so ensure those...
I was researching how to add fiber to her diet so I decided to make my own candy up , large oats,wheat germ,coconut,prunes,organic high fiber cereal and ...
I have 2 adult brothers that have FSHD. They were both diagnosed in their 30's. One has it more severly than the other one. Is there a possibility that my...
Hi Ray and Paul, I no sooner squeak out a few words than I hear from two of my favorite guys. Aren't you nice to say hello! Yes, I've been sort of gone from...
If you've been genetically tested and found not to have FSH, the only way your children could have it is through spontaneous mutation, which is comparatively...
Have you been DNA tested to prove that you do not have FSH? If not, then you might still have the deletion but not be showing symptoms. If you have the...
HI BEV HERE; I DO NOT KNOW, HOW TO ANSWER YOU.But however, you can be tested, I had this at late onset, I'am 62 and was diagnosed in 1989, but had, have...
Welcome, db. Good to have you with us. Please come back often. I can sense your worry for your children. Having FSHD in the family can be very scary,...
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