Inclusion Body Myositis – Treatment

Falls

Falling is a hazard of inclusion body myositis. Unexplained falls are often the symptom that first brings someone to the doctor, and are a frequent cause of injury. Falls must be taken seriously. Broken bones and other injuries are more dangerous if you have IBM, because your muscles can atrophy and weaken during the time that you are less mobile and recovering. In addition, injuries make it even harder to function; if your wrist is broken, you can’t use your arm to help you stand up. Some IBM patients have died from head injuries caused by falling.

People sometimes ask, “How many falls do I have to have before I’m ready for a cane (or a walker, a rollator, or a wheelchair)”. One fall is too many. Each fall is a potential disaster. If you are unsteady, start using an assistive device BEFORE you have frequent falls. Don’t let your pride or embarrassment get in the way of your safety. Unfortunately, there is sometimes a stigma to using mobility devices like rollators (walkers with wheels) or wheelchairs. To many, they are a symbol of age, frailty, and dependence. In reality, mobility devices can be a ticket to freedom: freedom to move, freedom to travel, freedom to go where you want without fear of falling.

Those who have foot drop from tibialis anterior muscle weakness often trip because their toes catch on the ground or low objects. Ankle foot orthoses (AFOs) help maintain normal foot position, aiding gait and reducing the risk of falls. A wide variety of AFOs are available. Many IBM patients do well with light carbon fiber AFOs with an anterior-placed calf cuff and long strut, which help extend the wearer’s knee.

Fall prevention includes more than mobility aids. Clean up clutter at home. Remove loose rugs, or at least secure their edges. Light up your living space. Inspect your home, and fix anything that might contribute to a fall.

If you do fall, how do you get up? Weak muscles make it difficult or impossible for many inclusion body myositis patients to return to their feet without assistance. Plan ahead. Learn special techniques for standing up from the floor. Consider buying equipment that can help you get up again.

Here’s a video that demonstrates creative ideas for helping yourself if you are trapped on the floor after a fall.

What if you simply can’t get up at all, and you are alone? You need to be able to call for help. Keep your cell phone with you at all times. Besides calling for family, friends, or neighbors, you should know that emergency assistance providers (call 911 in the United States) routinely provide assistance to people who have fallen and can’t get up. Consider getting a medical alert device so you can push a button to request help. Home fall detection systems can recognize falls automatically and call for help even if you are incapacitated.

Amazon’s Alexa and Google Home, the voice-controlled speakers and virtual assistants, are useful new high-tech systems. Finally, consider having a family member or friend check-in with you every day.