Duchenne muscular dystrophy (DMD) is a rare genetic disorder that starts in childhood and causes muscle weakness that worsens over time. There’s no cure for DMD, but new treatments have helped slow down the course of the disease.
As DMD progresses, the muscles of children with DMD weaken. Your child may need to use a wheelchair by the time they’re a teenager. As a caregiver, you may have to make modifications to your home to make it easier for your child to get around independently and avoid injury as they grow.
You can do some of these projects on your own, but others may involve major renovations.
When creating an accessible living space, the goal is to make it not only safer for your child to navigate but to provide them with a sense of independence, especially as they transition into adulthood.
To help make your living space more accessible, you can:
- create an open floor plan
- move light switches down to a lower height
- replace traditional light switches with rocker-style switches
- move power outlets higher up on the wall
- install smart home systems for turning lights on and off, locking doors, or changing a thermostat from a mobile device or through voice commands
- install automatic lighting around doorways and entrances
- install automatic door openers
According to sources such as the U.S. Department of Housing and Urban Development and the U.S. Department of Justice, doorways and hallways should be at least 32 inches wide to accommodate wheelchairs and scooters.
You may be able to widen them simply by removing the molding around the doorway. In some cases, you will need a contractor to cut into the walls.
It might also make sense to remove doors entirely. Curtains with tension rods can provide privacy.
For doors that remain, lever-style handles are easier to open for people with weak grips and limited mobility.
If possible, move your child’s bedroom to the first floor. You can also make other modifications like:
- lowering the height of a bed
- installing a motorized bed
- using a pressure-relieving mattress
- lowering the height of closet rods
The bathroom will need to be large enough to accommodate a wheelchair. If possible, consider dedicating a bathroom on the first floor to your child with DMD. A better option would be to have the bathroom connected to their bedroom.
Bathroom modifications can be costly but can help your child become fully independent.
To make your bathroom more accessible for someone with mobility issues, you can:
- install a roll-in shower with grab bars
- install seating in the bathtub
- install handheld shower
- put in non-skid flooring
- put in a motion-activated soap dispenser
- lower cabinets and counters
- raise the toilet seat and installing armrests and a bidet
- remove cabinets under the sink to allow wheelchair access
Reorganizing can go a long way to making your kitchen more accessible. To improve accessibility and safety in the kitchen, you can:
- relocate items that are used most frequently to make them easier to access
- move dishes and glasses to lower drawers
- adjust cupboards to a lower height
- install shelves or cabinet organizers that pull out
- purchase a rolling cart
- use a side-by-side refrigerator or a refrigerator with French doors
- install a side-opening oven and a roll-under stove top and sink
- install touchless kitchen faucets
Ramps can make it easier to get in and out of your home safely. Ramps can be made from wood, concrete, or aluminum. They can replace stairs or be built as a separate accessible entrance to your front door.
Lifts can help your child get up stairs and move on and off a wheelchair. There are many different types of lifts available depending on your needs and the layout of your home.
Before hiring a contractor and making big and expensive home renovations, first consider ways to make minor changes or incorporate accessibility products.
For example, rather than purchasing a new side-by-side refrigerator, you can make your refrigerator more accessible simply by placing more commonly used items in the produce drawers. Or, instead of raising your entire toilet with the help of a contractor, you can install a toilet seat riser to add several inches of height.
These general tips apply to our entire household:
- Declutter: The more stuff you have, the more likely it is to get in the way. Make sure to clear all walkways and hallways of potential obstacles.
- Rearrange furniture: You can open a floor plan simply by moving furniture around.
- Remove throw rugs: These rugs often get in the way of a wheelchair.
- Install hardwood or laminate floors: Smooth flooring provides less resistance to a wheelchair or walker.
- Consider the height of a wheelchair: A wheelchair user may find that transferring to a bed, couch, or chair is easier and safer if they’re the same height as the seat of the wheelchair.
- Stay up to date with new technology: A smartphone can connect to just about anything in your house nowadays. For example, doorbell cameras that connect to a smartphone app mean that you don’t have to get up to see who’s at the door.
- Plan ahead: DMD is progressive, so it’s important to plan ahead for the transition to adulthood.
You don’t have to completely remodel your home to make it more accessible. Storage solutions, accessibility tools, and new technologies can improve the functionality of your home for someone with muscle weakness caused by DMD.
In some cases, you might need to hire a contractor to modify your living space. Work with your care coordinator and social worker to make a plan for your home. Your care team may also be able to assist you with finding funding to cover expenses.