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Spotting Duchenne Early: Support and Practical Advice
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Limb-girdle muscular dystrophy (LGMD) can affect many aspects of daily living. Because it targets muscles in the lower and upper body, it can make tasks like walking or reaching difficult. Though there is no current cure for LGMD, treatments aim to make daily life a bit easier and safer.
There are many subtypes of LGMD that have different onset times and progression rates. Keep reading to discover strategies and tools that can help you maintain independence for as long as possible as the disease progresses.
LGMD causes weakness in muscles around the hips and shoulders that can spread to other areas as the disorder progresses. It has different severities and progression rates, all of which can affect daily life.
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As the muscles around the hips and thighs begin to atrophy, you may have a harder time with tasks like walking and transfers. Leg muscles are important for being able to initiate movement to get off surfaces such as a chair or the toilet. These tasks will become more difficult as LGMD progresses.
Walking also requires leg strength and muscle coordination. A waddling gait pattern is often one of the first signs of LGMD. Stair climbing will also become progressively more challenging, and you might need to use the handrail more often.
In addition to your lower body becoming weaker, your shoulder girdle and upper body muscles experience the same changes. Movements like reaching, lifting, and holding objects can get more difficult.
When upper body muscles become weaker, tasks such as getting dressed, brushing your teeth, fixing your hair, bathing, preparing meals, cleaning, and eating become more challenging.
Despite daily life challenges, there are tools and strategies that can help you maintain some independence.
Mobility aids are a general term for any piece of equipment that can support you while standing and walking. As LGMD progresses, you may end up using a few or even all of these devices.
Canes and walking sticks provide an extra contact point with the ground. If someone’s slightly unsteady, it can provide enough support to keep them upright. There are different types of canes with various features, such as multiple points, collapsible shafts, and ergonomic handles.
Walkers provide more support for walking and standing. The standard walker has either four rubber-tipped feet or two feet and two wheels in the front. Rollators have three or four wheels and often come with a seat to allow for rest breaks. These can be helpful to promote safe mobility and prevent falls.
Once leg weakness becomes more severe, it’s often time to have a wheelchair handy. Manual wheelchairs might be used for shorter trips or when you have help. Because LGMD affects the upper body as well, manual wheelchairs aren’t as common for self-use.
Power wheelchairs and scooters can provide you with more independence to be able to get around on your own. These can also come with many different features, such as tilting, elevating, and driving controls.
Professionals in the rehabilitation world can help you choose the equipment best suited to your needs. Physical and occupational therapists can recommend equipment and help fit the equipment specifically to you. As your abilities change, they can monitor and reassess your equipment needs.
Physical and occupational therapists are also experts in teaching modifications for daily activities. Let’s talk through some practical ways you can adapt daily activities to make them a little easier.
There are tools that can make getting dressed easier. Using dressing sticks to help hook onto and hold clothing can help make it easier to get your arms and legs in. Reducing your clothing with buttons and zippers can make it easier to get things on and off. Button hooks are available if you do have any favorite shirts that happen to have buttons.
Shoehorns can help you slide your feet into shoes more smoothly. You can also get shoes that are elastic and Velcro to avoid having to tie your shoes. When you’re getting dressed, it can be a good idea to be seated so you can save some energy and reduce your risk of falling.
Bathroom activities also require a fair amount of strength and coordination. Raising your toilet seat can make it easier to get on and off of it. Grab bars are great tools to have installed around the toilet and shower or tub to help with safety while transferring in the bathroom.
While in the shower, you can use a shower chair or bench to help conserve energy and reduce fall risk. For bathing and toileting maneuvers, there are long-handled tools to help with cleaning and wiping.
Reorganizing the kitchen so the items you use most frequently are within easy reach can help reduce the amount of overhead reaching you’ll have to do. Lightweight dishware can also make it easier to move things around in the kitchen.
Tools that stabilize jars or use electricity to open cans may help you conserve your energy and use alternative muscles. Easy-grip utensils may also be helpful for meal preparation and eating. Long-handled reachers can be handy throughout the house to reach objects far away.
Difficulty swallowing, known as dysphagia, can occur with LGMD. If it does, speech therapists can help you improve your feeding strategies and discuss options.
Overall, daily activities can be tiring. It’s important to prioritize which activities matter the most so you can use your best energy on these tasks.
A great strategy is to take breaks during activities so as not to burn yourself out. Sitting down during tasks such as dressing and meal preparation can also help to reduce fatigue and improve safety.
Let’s talk through some more practical considerations for how to make your home safer and more accessible while living with LGMD.
Clutter can easily become a tripping hazard, especially as you add mobility devices that need to glide over surfaces. Make sure your hallways and walkways are clear of clutter to avoid tripping over items. Remove loose rugs because they are a common tripping hazard around the home.
Make sure handrails are available in areas where you may need help moving around, such as entranceways and staircases. Good lighting can also ensure you have a safer time navigating around your home.
Doorknobs can get tricky to use. Switching out knobs for handles can make it easier to open doors and closets around your home, making it more accessible. Adjusting chair and bed height can help make it easier to get in and out of them.
Along with smaller changes, there are bigger changes that can help make your home more accessible. Adding ramps to doorways and between split-level parts of the house will make it easier to navigate wheeled devices such as walkers and wheelchairs. Widening doorways may also be required depending on the width of your wheelchair.
If you have stairs in your home, adding a stair lift may be beneficial if you still need to access different floors. Another option is consolidating the rooms you need to access on the main level of your house — such as moving your bedroom downstairs, if it’s typically upstairs.
Rehabilitation therapists can also come in handy here. They can do a home accessibility evaluation and make recommendations for your space.
Being prepared for the changes ahead will allow you to handle them better as they arrive. Having a solid care team in place can make this easier so you can feel supported in your journey.
Your medical team will be made up of many different types of healthcare professionals, including doctors, rehabilitation specialists, social workers, case managers, and more. It’s important to keep your team notified of any changes in your health status so they can best assess and treat you throughout your life.
Your needs will continually change over the course of your life. As changes happen, you’ll need to be reassessed for both your medical and adaptive needs.
Your team can help you make decisions about which equipment and home modifications will be needed and when. If you have any specific questions, chat with your healthcare team.
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Spotting Duchenne Early: Support and Practical Advice
14 Articles
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