Last post Thu, May 01 2008 9:24 AM by Crusty59. 6 replies.
My name is Brad and I just discovered that I don't have a clue what I'm doing. I started a Muscular Dystrophy Group on Disaboom about a month ago. I guess I don't know the difference between a blog and a chat room. I've been posting blogs under that group and have been wondering why no-one has had any input, oooooops. I have Faciaoscapulohumeral MD. I was diagnosed when I was 13 and was basically able to get by physically, not necessarily mentally, until about 6 years ago. I am now 41. It has been getting steadily worse, slowly anyway, since then. Now I'm so freaked out about falling, I rarely leave my apartment on my own and need to use a cane. Right now I'm more worried about how I'm suppose to pay my bills as I rely on SSDI and some help from my mom, but she's getting ready to retire and I don't want to go to a nursing home.
Hey Brad!
No worries about the blog/chat/group confusion--I think we're all still getting the hang of how to best use groups...Sometimes it's hard for me to remember to check mine so I tend to give a heap of feedback when I do stop by instead of the pretty regular ramblings I make in forums. You'll figure out what works for you and I hope the group gets more active soon.
Regarding your money concerns...are you able to work part-time to supplement your income in any way? It sounds like a stressful situation so I wish you the best!
Yes, I got mixed up when I first hit this site...I am still not good at it. I suppose the first thing that pops into one's head when someone says nursing home is a place where old people go, however the future is not all that bleak. There are some homes that have places that are equiped for individual living with nurses that assist and check on one as the day goes on. There can be meeing in the front with people that have things in common and are really up on the latest things. Keep looking for what you need. Got to go, just a drop by...Ni The Ancient One
HELLO BRAD ! WELCOME TO DISABOOM A GREAT SITE ! COME IN AND JOIN US FOR A CHAT RAINEY826
Welcome to Disaboom, Brad!
Welcome to Disaboom Daniel! Yeah, I was pretty lost too when I got here, having never posted to any kind of forum before. It just takes a while to learn your way around. Stick around, there are a lot of very nice people here.
Hang in there.
Becky
Hello Brad, Hi everyone
Brad, you and I don't seem that different. I have inclusion body myositis (IBM) it is one of the muscular dystrophies. I lived my life as a cabinet maker. At 32 years old I was stlii living without knowing. Then I started falling and droping things, They diagnosed me soon after that began. I am now 48 and have very weak legs and arms. I get around the house okay, but when I venture out, I use a power chair. I am also deathly affraid of falling, I can't get myself up anymore. When I started using the chair I always felt insecure, but now I feel it's a life saver for me. I have very few limitations about when and where to go. In fact in a few minutes I am going to get in my van and head out for homedepot (one of my favorite places). I too live on SSD. I am fortunate that I found a wonder woman who fell in love with me and now is going to marry me. She makes good money so that made life a little easier. I have been running an internet business from my home, The Cookie Nook it is called. I baked cookie gifts. I just sold it so that I can start doing wood crafts in my garage. It's been a dream of mine to do this again. It won't be easy, but I know I will enjoy it. Talk with you soon
Chris
