This is my first time here and I'm pretty glad I found this place. I just hope it's active enough. I was diagnosed with FSHLG Muscular Dystrophy at the age of 8. I'm 26 years old now and I find myself falling into this ridiculous fits of depression over the MD. At times, I'll be fine. I'll be happy and not even give the MD that plagues my life a second thought. But other times, I'm very sad and depressed because the MD is all I'm thinking about. I suppose it's those late nights alone, too much thinking. Over the years, I've noticed a decrease in muscle and strength. I found stairs starting to become a challenge when in HS I was able to bounce up those stairs without hurting and slowing down. Nowadays, I stare at whatever staircase is in my way. Contemplating how I should go about getting up the stairs. If there is no rail, I'm scooting up the stairs like a little kid. I've actually taken a nasty fall this year down some stairs, I could have seriously hurt myself. My mistake was: going up those stairs alone. But this is where I find myself coping hard. I'm an extremely independent person, I don't like asking for help nor do I feel like I require it unless I'm desperate. In my mind, because I've been living with FSHLG since age of 8, I've adapted so much into thinking I was like everyone else. That I could do things I shouldn't be trying to do. I can't ride a bike anymore, I pushed myself to the age of 19 to ride. And I even retried at the age of 22 to see if maybe I could do it. I found out the hard way that I couldn't even get my legs to lift up to put my feet on the pedal. I attempted rollerblades at around the same time. That was a no go as I couldn't stay standing for even a second. I didn't have the balance I used to have. So I fell. A lot. Taking my friend who was trying to help me down every time. So to prevent hurting ourselves anymore, I called quits on the rollerblades. I can't run. I can barely walk. I have braces that help out a lot. Keeps my ankles in place and gives my step more of the bounce it needs. I have a cane, but I never use it. I wouldn't even begin to know to properly use one unless someone showed me. But I never learned, not even from my father. (We weren't close and his views on the MD are very bitter and resentful.) Losing the bike, rollerblading and running didn't bother me much. I was still able to do other things. But driving will soon become a problem, luckily I was trained on hand controls. BUT! What good will that do for me if I lose most of my muscle function in my upper body? My mother has explained to me that my grandmother was in a wheelchair when she was 26. I have the same form of FSHLG she does. We have two different kinds that run in the family. One starts from your shoulders and works it way down to your feet (my sister and father have this form.) the other starts from the feet first and work it's way up. (myself and my grandmother.) We are unsure of which type my brother has until test come back. So 26. She was 26, I'm 26. I feel like this is a death sentence on my independence. I can feel the decrease each day. It's been rapid in this past year. I've lost almost complete function of my left hand. I can only use my pointer finger and thumb. All my other fingers are curled in. Where there was once muscle is now loose skin. And it's taken it's toll on my self esteem. My body doesn't look like it should. I'm less than 100 pounds now and all because of the muscle lose. I was 160 pounds 3 years ago in a size 14-16 jean with some curves and meat on my bones. I looked healthy and "normal". Nowadays, I'm nothing. My Nana thought I was 'sick' because of just how thin I was. I've been questioned about being anorexic. I've become very self conscious about people watching me do things. If I fall in public, I am so embarrassed because of how I need to get myself off the floor. I have to crawl to something high up just to get the leverage needed. My MD has been my biggest demon to struggle with because I've had my father's bitter influence for a good chunk of my life until 15 when my folks divorced. I stayed with my mother and since she didn't experience what my sister and I do, she expected us to do some crazy things like normal kids. Forgetting we had limitations. This could be some explanation to my why my independence is so strong. I'm used to doing it all on my own because I had to. Nowadays, I can barely wash my own hair in the shower without fear that I'm gonna fall over because now, I've got hardly zero balance. Hell, I trip over myself. My boyfriend and best friend have been in my life for 4 years, they've seen the decline of my condition over the year. My boyfriend (whose name is Manny) is very supportive to me. He's one of the very few people I even ask for help from. He's seen me go from being able to do many things to being limited. He says he will always care about me and love me. And when I couldn't do it anymore, he'd take care of me. That actually terrifies me, not endears me. I saw what the MD my father had did to TWO of his marriages. Both failed. His 2nd wife was tired of physically caring for him. She'd had enough, or so that was claimed. I'm told by Manny that we're different from him. He says we're strong. And as much as I believe him logically, my emotions sometime get the best of me. What happens if one day, he can't handle it anymore? What happens if he becomes resentful toward me? What would happen if he becomes unhappy and I just become a burden? I don't EVER want to be a burden on anyone. And although many claim I'm not and I should believe them...I can't help but to feel worthless and helpless about a lot of things that I COULD do if I wasn't disabled. I've heard much advice about not thinking about all the things you can't do and think about all the things you CAN do, but that lick of advice is very difficult to follow when you're wishing you could hold your child in your arms when you give birth or playing with your child that other parents do. It's hard to follow when you want to do some of these wonderful things like be a doctor or a veterinarian. I know I can't be the only one who has difficulties coping with their condition. What's the best way you guys found worked for you? That's a healthy choice. What advice can you guys offer to me so that maybe I can keep working on being positive and maybe know that I'm not alone. We all feel alone in this world and that's why we're here. So we don't have to be, right?