If I had the opportunity to really spread a message, it would be about the importance of exercising regularly and as actively as possible, even if you have Osteogenesis Imperfecta. So far in my adult life, my Type IV OI has presented mildly. I was heavily involved with exercise a few years ago, including step aerobics, kickboxing, and traditional aerobics. I was sidelined by a knee injury that I acquired while trying to develop a running program (which was stupid to try, but I wanted to be normal for a minute) and have gradually been getting myself back to the active point I was at before I hurt myself.
However, even I can never get back to that point, I work hard to maintain a challenging walking program and try to play active Wii games a few times a week on top of this. I also like to practice Pilates in an effort to keep my core strong and healthy. Obviously, every one who has OI can’t do these things, and many sufferers can suffer fractures or breaks from sneezing or leaning over a counter too roughly which makes anything impacting a no-go. However, for some of us, light to moderate exercise can help us develop a stronger muscular and skeletal system that will help us stay balanced and prevent falls (which lead to broken bones) and also lead to greater bone density in general (within reason depending on your exercise).
While you absolutely should talk with your physician before beginning any exercise program, especially if you have OI, you should also take any advice given and ask questions about alternate exercise possibilities if the activity suggestions your doctor makes aren’t feasible. For example, when I was first diagnosed with OI at age 8, my parents were told that swimming would be a good exercise for me because it builds strength without impact. We did not have a pool, could not afford a pool, and lived in a very rural area without access to a YMCA. The two public pools at the parish seat were always so full of people in the summer, one could not swim in them for exercise if one wanted to. Swimming was not a feasible activity.
My parents did not ask about alternate exercise methods that they may have been able to provide. Instead, I went marching toward adolescence with a list of exercises and play activities I could not engage in and nothing on my list of activities I could participate in. I went from being a little pudgy to morbidly obese over the next 6 to 8 years gaining weight at the somewhat standard rate of about 10 pounds a year. When I decided to start losing weight after high school, I had to greatly reduce my calorie consumption to begin to lose weight and couldn’t even do light exercise because I weighed too much. After a couple of years, I had gotten small enough that I could do more than just walk and actually begin to shed weight in earnest.
I think it is important for you to realize your limitations if you have pushed up against them but not to relegate yourself to a life of staying still as it is not healthy. Your doctor or a physical therapist should be able to help you design a workout program that accommodates your condition while challenging your body.
I want to continue to preach this message.
And on that note, I want to leave a link to Next Step Fitness. This inspirational place has assisted a great many people with spinal cord injuries in maintaining strength and keeping their bodies fit and healthy through paralysis. Let this be an inspiration for your own journey