Central Core Disease Myopathy

Hello All,

I am from Canada and I have been suffering with CCD since birth. My grandmother, father, and both brothers have it since birth as well. I thought my family were the only ones. My doctor says that CCD is a branch of Muscular Dystrophy but extremely rare.

Like many posts on here, I also am unable to run, jump, and climb stairs without a hand rail one step at a time with both feet planted. Anyone with this condition knows that leveraging your body to climb stairs by leaning forward with hands on knees is key to getting up them.

For me the emotional struggle far outweighs the physical one. Your not quite crippled enough to be left alone but to different that you stand out as not being normal. If I had a quarter for everytime a person honked their horn while using a cross-walk because they thought I was to lazy to speed up I'd be rich.

Only now at 29 yrs old am I starting to realize that being handicapped doesn't determine your fate it just makes for a longer uphill battle than the average person.

I know now in my mind that people around me never really had a problem with my disability it was me who did. I missed out on a lot in life because I was to shy or embarressed to expose my limitations to the world around me. I would be late for class everyday after lunch because there was no elevator in the school leaving me to use the service stairwell on the opposite end just to avoid other kids seeing my go up them. If one did come by and I was half way up I would stop and pretend I forgot something and go back down which is easy and then retry once they walked away. 

I really resented God for the better portion of my life for making me this way. I met a girl online and when I gathered the courage to go on a first date I drove to her apt and noticed there was no elevator...f**k! I said. I made an excuse for her to come outside so I didn't have to go up and when she came down I slipped in-front of her and fell down breaking my cell phone and my pride before even saying hello.

That was SIX years ago and we are happily married. She gave me the confidence I needed in life to live happily even with CCD. Since I can't get all those years back, if your young and reading this just don't wait as long as I did to throw yourself out there into the world!

I began six years ago working for the postal service and although hard I was able to do my job. A few years ago my condition worsened somewhat so I asked for a light duty inside job that was available for those with injuries but my supervisors declined and began harrassing me. I finally took my case to the Canadian Human Rights Commission and I'm now awaiting settlement but am finally being accommodated with a different job in the workplace.

I am also an inventor of a ground breaking new food industry product and am trying to pitch my idea to Starbucks in the near future! If I am successful I will have made the multimillion dollar dream a reality! I hope that if success finds me I will be able to inspire others and help the many other disabled people bring their dreams and ideas to life.

I have also been told by my doctors that rigorous excersise can cause damage to my muscles but something tells me that they could be wrong since the condition is so rare. This is why I just ordered a Bowflex Home Gym and Treadclimber so I can prove this to myself once and for all! I am 5'3" 135lbs and I can't lift a 4L jug of milk outward with my arm fully extended at shoulder height so that among others is going to be my starting point for gaging my progress. If I pull a muscle it heals and I have gotten stronger since being a baby so maybe rigorous working out can help me build muscle even if it takes longer than normal?? I am going to give it all I got and will post on youtube my journey if I start to notice improvement!

I hope this has been helpful and I will keep anyone who asks posted with my progess business and body. Disabled people can do great things, I just found that out far too late!

Have a great day!