Your Guide to Living Well with Muscular Dystrophy Disability

Understanding Muscular Dystrophy as a Disability

Muscular dystrophy refers to a group of diseases that cause progressive weakness and loss of muscle mass. There are many different types of muscular dystrophy that can affect people differently. However, they all result in progressive muscle degeneration and weakness that can eventually lead to significant disability.

Muscular dystrophies are considered genetic disorders as they are caused by abnormalities in genes involved in producing proteins needed for muscle function. In most types, it is passed down through families genetically. The most common types include Duchenne, Becker, limb-girdle, facioscapulohumeral, and myotonic muscular dystrophy.

While the severity and progression varies, muscular dystrophy ultimately impacts muscle function and mobility. Most types will eventually lead to losing the ability to walk as leg muscles weaken. The muscles used for breathing and heart function can also be affected in some types. This makes muscular dystrophy a disabling condition.

Key Signs of Disability

There are several key signs that muscular dystrophy leads to significant disability:

• Progressive loss of muscle strength and bulk
• Impaired mobility - difficulty walking, climbing stairs, etc.
• Balance issues and falls
• Fatigue, exhaustion, and muscle cramps
• Trouble breathing due to weakened respiratory muscles
• Curvature of the spine (scoliosis) and joint contractures
• Cardiac issues like irregular heartbeat or cardiomyopathy
• Difficulty performing daily tasks like dressing, bathing, household chores

These symptoms tend to appear between early childhood to early adulthood depending on the type. They worsen progressively over the years and result in major limitations in motor function and independence.

Impact on Major Life Activities

Muscular dystrophy significantly impacts major life activities that are critical for functioning independently:

• Mobility - Muscle weakness in the legs and hips impairs walking, standing from sitting, climbing stairs, etc. Most require mobility aids like wheelchairs or leg braces.
• Self-care - Inability to bathe, dress, groom, or feed oneself without assistance as arm muscles weaken.
• Performing manual tasks - Difficulty writing, typing, grasping objects, doing household chores due to diminished hand and arm function.
• Seeing and hearing - Some types affect muscles around eyes and ears leading to vision or hearing loss.
• Breathing - Respiratory insufficiency requiring ventilator support is common in advanced disease.
• Cardiac function - Some variants weaken heart muscle increasing risk of arrhythmias and heart failure.

Due to these limitations, most living with muscular dystrophy require high levels of supportive care over time. This includes mobility aids, home modifications, special equipment, and personal assistance.

Receiving Social Security Disability Benefits

Given the disabling effects of muscular dystrophy, many apply for Social Security Disability Insurance (SSDI) benefits in the United States. The Social Security Administration (SSA) has specific rules for qualifying disabilities:

• There must be a medical condition leading to severe functional limitations.
• The condition must prevent working or limit functioning for 12 months or longer.
• Working is defined as Substantial Gainful Activity (SGA) - earning over a monthly limit.

Muscular dystrophy clearly results in severe impairments in functioning that prevent working long-term. Especially as the disease progresses, maintaining employment becomes impossible for most. While some may work early on, deteriorating muscle function and mobility soon lead to job loss.

To receive SSDI benefits, appropriate medical documentation must be submitted, including:

• Medical records outlining diagnosis and disease severity.
• Results of strength, pulmonary, and cardiac testing.
• Assessments of functional limitations and impairments.
• Medication lists, treatment plans, and prognosis reports.

Many individuals disabled by muscular dystrophy rely on SSDI benefits for income, health insurance, and work training programs. Benefits may also be available for dependent family members. Overall, SSDI provides a critical financial safety net.

Making Life Easier - Adaptive Equipment and Home Modifications

Living with muscular dystrophy and the resulting disabilities can be very challenging. However, there are many types of adaptive equipment, devices, and home modifications that can make daily life much easier and safer.

Mobility Devices

Mobility aids are essential for preserving independence and reducing risk of falls:

• Wheelchairs - manual or electric tilt-in-space models for comfort and support.
• Power scooters - for longer outdoor distances.
• Walkers, canes - provide stability when walking short distances.
• Grab bars, railing - assist with balance and transfers.
• Ramps - make doors and entryways wheelchair accessible.

Daily Living Aids

Equipment for self-care, communication, and household tasks:

• Shower chairs, bath lifts - allow safer bathing.
• Raised toilets, grab bars - ease transfers on and off toilet.
• Long handled tools - like combs, brushes, and scrubbers extend reach.
• Eating utensils - built up handles reduce grip needed.
• Speech generating devices - help communicate if speech impaired.
• Door openers, remote controls- reduce need to grasp and twist.
• Adaptive clothing - features like velcro closures and leg zippers.

Bedroom and Seating

Proper beds and chairs improve rest, sleep quality, and pressure sore prevention:

• Hospital beds - allow raising head and legs for repositioning and transfers.
• Patient lifts - powered devices that lift in and out of bed safely.
• Pressure relieving mattresses - reduce risk of painful skin ulcers.
• Reclining chairs and lifts - enable moving from sit to stand with less effort.

Making Homes More Livable

Home modifications maximize access, safety, and ease of use:

• Installing ramps, widened hallways and doors.
• Elevating electrical outlets and lowering counters.
• Non-slip flooring, well-lit rooms, and stair rails.
• Rocking light switches, touch lamps, remote controls.
• Front loading laundry and keyless door locks.
• Adjustable stove tops and roll under sinks.

With proper home adaptations and equipment, people living with muscular dystrophy can successfully manage their activities and live more independently.

Healthy Lifestyle and Wellness Tips

Although there is no cure, certain lifestyle measures can help maximize quality of life with muscular dystrophy:

Exercise and Stretching

While exercise does not slow disease progression, inactivity can worsen muscle loss and flexibility. Low-intensity activities like water therapy, stretching, and range of motion exercises promote mobility.

Proper Nutrition

Eating a well-balanced diet helps maintain strength and weight. Getting enough protein and calories is crucial to support weakened muscles. Nutritional supplements may also help those

Disclaimer: This article is for informational purposes only and does not constitute medical advice. Always consult with a healthcare professional before starting any new treatment regimen.