What is Muscular Dystrophy? Symptoms of Muscular Dystrophy

Muscular dystrophy (MD) is a progressive disease that gets worse over time, often requiring specialised care to slow down the worsening of symptoms and help with everyday tasks. Depending on the specific form of muscular dystrophy a person has, they may slowly lose the ability to walk and move for themselves.

Learning you or a loved one has been diagnosed with muscular dystrophy can be scary and uncertain, especially as it’s a group of diseases rather than one specific condition. However, getting all the information about it may make you feel more confident and prepared moving forward.

In this article, we’ll help by walking you through what muscular dystrophy is, its symptoms, signs to look out for and causes. We’ll also explore how a carer can help manage symptoms and improve quality of life.

What is muscular dystrophy?

Muscular dystrophy is the name for a group of rare conditions affecting the muscles, gradually causing them to weaken and waste over time. They’re otherwise known as neuromuscular conditions or as muscle-wasting and weakening disorders. They result in a loss of muscle mass, which makes it difficult to move and do things independently.

Muscular dystrophies are usually inherited and are caused by changes in your genes responsible for the structure and function of muscles. They’re progressive conditions, meaning symptoms will get worse over time. Unfortunately, there isn’t currently a cure for muscular dystrophy, although plenty of research is being done to hopefully change this in the future.

Muscular dystrophy is one of the most commonly known hereditary diseases. Some forms can be noticeable at birth, while others won’t show up until a person’s teenage or adult years. Some muscular dystrophies are more common in boys.

Types of muscular dystrophy

Muscular dystrophy is an umbrella term for many different conditions affecting the muscles, including: 

• Congenital muscular dystrophy (CMD): Usually becoming apparent in the first few months of life, babies may appear floppy and experience delays in reaching motor milestones.
• Duchenne muscular dystrophy (DMD): More commonly affecting boys, DMD is often present in early childhood. People diagnosed with DMD often have a life expectancy of 20 to 40 years.
• Becker muscular dystrophy (BMD): Related to DMD, although BMD’s symptoms often appear later in childhood, are milder and don’t affect life expectancy.
• Emery-Dreifuss muscular dystrophy (EDMD): Most people diagnosed in childhood or adolescence will usually live until at least middle age.
• Facioscapulohumeral muscular dystrophy (FSHD): Symptoms can develop in childhood or adulthood, and progression is often so slow that it might not affect life expectancy.
• Limb girdle muscular dystrophy (LGMD): Symptoms and how they’re reacted to vary greatly with LGMD, as some people with the condition progress quickly with a reduced lifespan, while others do not.
• Myotonic dystrophy (DM): This form of muscular dystrophy may develop at any stage of life, and doesn’t always affect life expectancy.
• Oculopharyngeal muscular dystrophy (OPMD): One of the latest-onset muscular dystrophies, OPMD’s symptoms may not appear until 50 to 60 years old without affecting life expectancy.

Signs and symptoms to look out for

Symptoms of muscular dystrophy may differ from person to person, depending on their age, the type of muscular dystrophy they have and other health factors. The most common signs to look for are:

• Muscle weakness
• Changes in mobility, such as difficulty walking
• Muscle stiffness or pain
• Difficulty lifting things
• Increased number of falls
• Tightness in the joints

Some, but not all, types of muscular dystrophy can affect the heart muscles used for breathing. Young children may take longer to reach certain milestones, like sitting up, crawling and walking.

Can muscular dystrophy be treated?

Yes – while there isn’t currently a cure for muscular dystrophy, a range of treatments can be used to manage your symptoms. You’ll be given a healthcare team of specialists to help with your specific symptoms and type of muscular dystrophy.

Medical treatments for muscular dystrophy

Several treatments may be offered to you, including:

• Physiotherapy to help with movement, tightness and pain relief
• Medicines to slow the progression of the disease
• Treatment for heart problems as a result of muscular dystrophy, including a pacemaker or beta blockers
• Surgery for complications, like scoliosis or joint tightness
• A machine to help with lung function

Support for day-to-day living with muscular dystrophy

Medicine isn’t the only tool to manage symptoms and make living with muscular dystrophy easier. You’ll also be offered support for a range of things, although what you get may differ depending on your symptoms.

The most common support aids are:

• Occupational therapy helps continue day-to-day activities
• Mobility equipment, such as walking frames or wheelchairs
• Home adaptations, like a stair lift or grab bars
• Muscular dystrophy support around the house, at work or school

Muscular dystrophy care: how a professional carer can help

Muscular dystrophy often significantly impacts mobility, especially as a person progresses into adolescence and adulthood. A professional carer will support you with moving around at home and outside, fostering independence and encouraging you to continue living life without being stuck indoors.

As your symptoms get worse as time goes on, you may find it increasingly difficult to get up from your bed or chair, cook and clean without feeling extremely fatigued and walk from room to room. Live-in care at home means you can get all the support you need without having to move away from your belongings and loved ones.

There are several benefits to muscular dystrophy care at home:

• Compassionate care throughout the day and night
• Encouragement to remain independent for as long as possible
• Help maintain your social life
• Peace of mind for loved ones
• A tailored care plan that can be changed whenever necessary, as symptoms progress
• Experienced carers knowledgeable in muscular dystrophy and symptom management
• Another professional in your care team who can liaise with doctors, ensuring the best possible care at all times
• Support from the comfort of your own home

How Trinity Homecare can help

At Trinity Homecare, we’re committed to providing our clients with the best possible complex live-in care, no matter what the circumstances. We’ll match you with one of our fully trained carers who has experience with muscular dystrophy and its symptoms, ensuring you’re in the best hands for managing symptoms and improving quality of life.

The care we provide includes:

• One-to-one support at home
• Completely bespoke live-in care that has been tailored to you
• Specialist care for a number of different circumstances
• Home carers carefully matched to your needs
• CQC rated ‘Outstanding’ live-in care services

From mobility assistance to supporting personal care, cooking and light housework, our carers keep independence and dignity as their main priorities. We’ll keep your routine as similar as possible, from the comfort of your familiar surroundings, to make sure you don’t have to worry about any unnecessary or upsetting changes.

Talk to us today

If your loved one requires home care, chat with one of our friendly care team today. We offer a free, no-obligation enquiry and assessment service and are happy to offer information and advice to help you find the perfect home care solution.

Call us on 020 4572 5583 in confidence for a free, no obligation quotation. If enquiring outside of our opening hours, please complete our online form and we will contact you the next day.