Navigating Mobility Challenges in Limb-Girdle Muscular Dystrophy: Tools and Resources

This blog is dedicated to people living with Limb-Girdle Muscular Dystrophy. It focuses on the mobility challenges they experience and explores practical approaches to support daily activities. This includes physical therapy, mobility aids, assistive devices, and home modifications, all aimed at enhancing independence and improving overall quality of life.

What is Limb-Girdle Muscular Dystrophy?

Limb-Girdle Muscular Dystrophy (LGMD) refers to a group of genetic conditions that cause progressive weakness and wasting of the muscles, primarily affecting proximal muscles (those close to the center of the body), such as the muscles of the shoulders, upper arms, pelvic area, and thighs. As the disease advances, muscle weakness leads to mobility challenges, making daily activities increasingly difficult.^{1, 2, 3}

This blog focuses specifically on how Limb-Girdle Muscular Dystrophy affects mobility and explores practical tools, assistive devices and resources that can help individuals navigate daily tasks, maintain independence and enhance their quality of life. If you’re looking for a broader discussion about Limb-Girdle Muscular Dystrophy — including other symptoms, diagnosis, available treatments, and investigational therapies  —you can explore our blog dedicated to these topics.

Mobility Challenges for People with Limb-Girdle Muscular Dystrophy

Individuals with Limb-Girdle Muscular Dystrophy often face mobility challenges due to progressive muscle weakness, particularly in the hips, legs, and shoulders. The first signs can appear in both childhood and adulthood, with earlier onset generally leading to a faster progression of the disease. However, the onset and severity of the symptoms varies widely among the different subtypes. ^{2, 3}

Common mobility challenges for people with Limb-Girdle Muscular Dystrophy may include:

• Changes in walking pattern, a “waddling” gait because of weakness of the hip and leg muscles. ^{1, 3}
• Trouble getting out of chairs or rising from a toilet seat. People with Limb-Girdle Muscular Dystrophy may need to use their arms to push themselves up from a squatting position due to weakness in their thigh muscles. ^{1, 3}
• Difficulty climbing stairs or running. ^{1, 3}
• Weakness in the shoulder area can make tasks like reaching overhead, holding arms outstretched, or carrying heavy objects challenging. ^{2, 3}
• Joint stiffness (contractures) can also occur for some people with Limb-Girdle Muscular Dystrophy, restricting movement in the hips, knees, ankles, or elbows ^{1, 3}

Physical Therapy for Limb-Girdle Muscular Dystrophy

Physical therapy for people with Limb-Girdle Muscular Dystrophy can help improve or maintain mobility and strengthen certain muscles to allow greater flexibility in the joints and reduce the risk of contractures. ³ Physical therapy programs are generally tailored to individual needs, as it is necessary to balance muscle training to improve mobility with the need to protect the delicate muscle fibers, which could be damaged by inappropriate exercises. ⁴

There are two main types of exercise generally considered potentially beneficial for people with muscle disorders like Limb-Girdle Muscular Dystrophy. ⁴ Before starting any exercise program, it is important to consult a physician or healthcare provider to ensure the exercises are safe and suitable for individual conditions.

• Strength or resistance training: This form of exercise aims to maintain muscle strength and endurance and typically involves performing repeated muscle contractions against resistance. Strength or resistance training may include a variety of exercises, such as step-ups, free-standing or assisted squats, and knee flexion and extension. ^{4, 5, 6}
• Low-impact aerobic training: This type of training involves gentle, rhythmic, and continuous movements such as walking, swimming, water exercises, or cycling. These activities can help support muscle and cardiovascular functions whilst preventing muscle atrophy. ⁴ Swimming or water exercises can be particularly effective for maintaining muscle tone. Additionally, the buoyancy of water helps reduce stress on the muscles and joints, lowering the risk of strain and injury. ³

Mobility Aids and Devices

Mobility aids and other assistive devices can help people with Limb-Girdle Muscular Dystrophy stay mobile and maintain independence for as long as possible.⁷ A trained physiotherapist or occupational therapist can assess individual needs and recommend the most suitable mobility aid while also providing guidance on proper use. ⁷

Some of these may include:

Walking aids

In the early stages of Limb-Girdle Muscular Dystrophy, the use of walking aids can provide support to prevent falls and reduce fatigue and stress on muscles. ⁴ Some commonly used options include:

• Canes: A cane, a simple walking stick with a handle, can be helpful for individuals with mild balance issues or those who need occasional support. Canes can help make walking easier and reduce the risk of falls. ^{2, 3}
• Walkers: A sturdy, four-point frame designed to provide stability and balance while the person walks. They are often equipped with wheels or rubber-tipped feet that move along with the user. ²

Wheelchairs and Scooters

While walking aids can help individuals stay mobile for as long as possible, additional support, such as wheelchairs or scooters, may become necessary as Limb-Girdle Muscular Dystrophy progresses. ⁷ Choosing the right device depends on individual needs and daily activities:

• Mobility scooters – Designed primarily for outdoor use, these devices are controlled using handlebars and are useful for covering long distances. ⁸
• Power wheelchairs – Suitable for both indoor and outdoor use, these wheelchairs are highly customizable and maneuverable. They can be steered via different methods, such a joystick, switches or head arrays. ⁸

Orthotic Devices

Orthotic devices, also known as orthoses, are braces designed to support weakened muscles during walking, improving comfort whilst also helping to prevent contractures from getting worse.⁹

Common options include:

• Ankle-foot orthoses (AFOs) – These devices cover the ankle, foot, and the lower leg below the knee. AFOs can help improve mobility and alleviate pain while walking. ⁹
• Knee-ancle-food orthoses (KAFOs) –  Similar to AFOs but extending support to the knee joint, KAFOs may help limit excessive joint movement, may reduce pain, and improve alignment and stability. ⁹

Given the progressive nature of Limb-Girdle Muscular Dystrophy, it may be recommendable to consider not only current mobility needs, but also future challenges. Selecting the right mobility aid with long-term quality of life in mind can help individuals maintain independence and comfort as their condition evolves.⁸

Home Modifications for Limb-Girdle Muscular Dystrophy

Adapting the living space for people with Limb-Girdle Muscular Dystrophy can make daily activities more manageable and safer. Since this condition is progressive, it is often advised to think about not only the equipment that is required at the present but the equipment that will be necessary in the future. ¹⁰ Depending on the individual situation, severity of the condition and how fast it progresses, some of the home modifications can include:

Access to the house

• Where possible, a property should have step-free access. ¹⁰
• If the person can still walk and is unlikely to need a wheelchair in the immediate future, it may be helpful to create shallow steps. ¹⁰
• If the person uses a wheelchair, supplementary ramping may be necessary. If a ramp with the correct slope is not feasible, a short rise lift, or step lift can be installed for easier access. ¹⁰

Doors

• Exterior doors may need to be widened to fit a wheelchair or mobility devices. Additionally, doorbells and spyholes should be placed at an accessible height. ¹⁰
• Inside the house, swing or sliding doors can be easier to use for individuals with restricted upper limb movement.¹⁰

Bathrooms

• The type of floor can be selected based on personal needs. For example, a non-slip surface can help those people who can walk but experience balance difficulties. ¹⁰
• Installing a roll-in shower, grab bars, and a shower chair can enhance safety and independence.
• It is recommended that sinks have enough space underneath for a wheelchair to fit comfortably. ¹¹
• Faucets (taps) with lever handles or electronic sensors can make it easier to turn water on and off without needing to twist the wrist or grasp onto a knob. ¹¹
• Toilet modifications, like adding a raised seat or placing a spacer under the base, can make it easier and safer to use. ¹¹

Kitchen

• Whenever possible, the kitchen should have enough open space to allow easy movement with a wheelchair. An open layout, like an island-style design, can help improve accessibility and make daily tasks more manageable. ¹¹
• Countertops should be at a lower height to accommodate seated use. ¹¹
• Sinks and ovens should have enough space underneath to allow wheelchair access. ¹¹
• Storage areas should be adjusted so frequently used items are within easy reach. Cupboard and drawer handles are best designed as D-shaped for ease of grip and use. ¹⁰

Bedrooms

• Positioning the bed in the center of a wall provides caregivers with easy access from both sides. There should also be enough space around the bed to allow for easy wheelchair access and the use of hoisting equipment. ¹⁰
• Hospital beds with adjustable height can help make getting in and out of bed safer and more comfortable for both the user and caregivers. ¹¹
• Wooden or laminate flooring is often preferred for easy cleaning and smoother wheelchair movement. ¹⁰
• It may be useful to have an ample number of electrical sockets to accommodate medical equipment, such as ventilators, cough assist machines, or adjustable beds. ¹⁰

For further guidance, you can visit the Muscular Dystrophy UK Adaptations Manual and the MDA Home Modifications Guide for detailed recommendations on accessible home modifications.

Conclusion

Managing mobility challenges for people with Limb-Girdle Muscular Dystrophy can involve a combination of therapies, assistive devices, and home adaptations to maintain independence and improve quality of life. Physical therapy, including strength and low-impact training, can help preserve mobility, strengthen muscles, and reduce contracture risks. Mobility aids like canes, walkers, wheelchairs, and orthotic devices can provide support as the disease progresses, reducing fatigue and enhancing comfort. Additionally, home modifications — such as installing ramps, roll-in showers, grab bars, and accessible storage — can significantly improve safety and ease daily tasks. By integrating these strategies under the guidance of healthcare professionals, individuals with Limb-Girdle Muscular Dystrophy can optimize their independence which may improve overall well-being.

Currently, there are no approved treatments that can modify the progression of Limb-Girdle Muscular Dystrophy. Currently, different investigational products are being studied in clinical trials with the aim to treat Limb-Girdle Muscular Dystrophy.

At myTomorrows, we have a team of Patient Navigators, who are multi-lingual professionals with a medical background, who can help you to explore your treatment options and support you through your journey.