Having Duchenne muscular dystrophy is scary for a number of reasons. High up on that list is experiencing a fall.
That’s especially true for those who have been on steroids for many years. Our bones aren’t as strong because of it. For those of us in a transition stage between ambulation and nonambulation, losing control and potentially breaking a bone, which could lead to more side effects down the road, is a well-founded fear.
I’ve been fortunate to have only fallen a few times, with none of them leading to breaks.
To prevent falls from happening to you, your son, or a friend, it’s always important to lean on something when standing, maintain control of your power chair, conserve energy as much as possible, and communicate with your caretaker.
Having the ability to safely stand on your own is great, and the best way to maintain that is to avoid falling. When I am up and about, I usually take stock of the things around me. Where are the errant dog toys? Are there any changes in surfaces? Are other people in the house moving around?
I plot my path ahead of time and make sure my footing is sound. Walking and standing with Duchenne is like negotiating the highest peak of the world all the time, but it’s extremely important to do so.
You should also identify objects that can help you stabilize if needed, such as couches, chairs, or counters. That way, if you are ever off balance, you can quickly reach out and brace yourself. If something happens and there’s nothing to stop you from falling, you can do it in a way that minimizes the risk of a break.
It’s extremely important to know your limits and to be honest with yourself. If you think it’s impossible to stand without immediately falling, don’t do it. Being careful also applies to people who can stand and support their own weight.
If you aren’t at home, I would try to stay in your chair as much as possible, as there may be too many variables to control and too many obstacles to trip you up.
Power chairs are lifesavers for people with Duchenne. They are our legs and our portal to participating in the outside world. At the same time, they are powerful machines that must be handled with care if you want to avoid falling or sustaining a serious injury.
In one instance during a college lecture, I got out of my chair to get my computer and tripped on the caster wheel upon returning. Sometimes it’s easy to forget the large footprint some of these chairs have, so you must be equally careful getting in and out of the chair as you are walking around. And please, turn the power chair off before you make any movement. I’ve almost run myself over several times by accidentally bumping the joystick.
My parents have instilled in my head that I should conserve energy as much as possible. This idea applies to falling, too, because if you are tired, you are more likely to lose control of your muscles and end up wondering how you got on the ground. You must be in tune with your body and know when it’s time to stay in your chair, and when it’s safe to get up.
For some, there is also the risk of being dropped by someone else. This is where communication needs to be clear. A caretaker will obviously be trained to pick you up correctly, but it’s on you to speak up if something is wrong. The last thing anyone wants is for you to get hurt.
Sometimes falls do happen, and that’s why bone health is extremely important. I take calcium supplements and a bisphosphonate used to treat osteoporosis to ensure my bones are as strong as possible. What works for me won’t work for everyone, so I recommend you consult with your doctor before trying anything.
Falling is one of the most frightening things that can happen with Duchenne, and I hope that with these tips, we as a community can prevent it from happening as much as possible.
When you are standing or walking, be aware of your surroundings and take extra care, because a little bit of horsing around is not worth the risk of breaking a bone.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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