Muscular Dystrophy affects everyone differently, so sometimes care can be especially difficult. The group of nearly 30 diseases can appear from early childhood to later in life. Furthermore, the type of Muscular Dystrophy you have determines how it affects your life. This disability makes even the most simple of daily activities difficult, so as we age, a caregiver is sometimes necessary to help those with Muscular Dystrophy with their daily needs.
Below, we’ll cover everything you need to know about caring for someone with Muscular Dystrophy.
What Muscular Dystrophy Is
Muscular Dystrophy, or MD, is a combination of genetic diseases in which abnormal genes interfere with the creation of proteins necessary for healthy muscle. This causes progressive weakness throughout the body and loss of muscle mass. Due to the loss of muscle, many affected by MD use a wheelchair.
Typically, symptoms for MD include:
- Frequent falls
- Trouble with movement of the arms and legs, running, and jumping
- Muscle pain and stiffness
- Learning disabilities
- Delayed growth
- Heart and breathing problems
Even though there are many types of MD, there are a few distinguishing factors. Below are the many different types of Muscular Dystrophy:
- Duchenne – Considered the most common form of MD and more common in childhood for boys.
- Becker – Progresses much slower than Duchenne and is seen more commonly in the teens to mid-20s.
- Myotonic – Consists of the inability to relax muscles after contractions. The face and neck muscles are often affected first.
- Congenital – Apparent at birth. It can either cause slow progression and mild disability or progress very quickly and be a significant impairment.
- Limb-girdle – Begins in the hips and shoulders. Those with this type of MD tend to trip more frequently due to difficulty lifting the front of their foot.
- Facioscapulohumeral – Muscle weakness begins in the face, hips, and shoulders at almost any time. This form of MD can become apparent in childhood or even much later in life.
- Oculopharyngeal – This refers to the effect MD has on the eyes and throat. This type happens later in life and commonly shows in impaired vision, limited eye movement, difficulty swallowing, and more.
- Distal – Appears first in the lower legs and arms, but can spread throughout the body. This type usually doesn’t become apparent until later in life, typically between 40 and 60.
- Emery-Dreifuss – This type is categorized through various heart issues. A person suffering from Emery-Dreifuss MD may experience arrhythmias, heart palpitations, bradycardia, fainting, heart failure, and more.
Limitations a Person With Muscular Dystrophy Has
Muscular Dystrophy can cause a variety of limitations depending on the type you, or your loved one has. Mobility is the main limitation that comes with MD as the muscles weaken. This also means that walking, standing, running, and motor control are limited. However, the limitations caused by MD aren’t limited to movement. MD affects muscles throughout the body, which causes respiratory problems, impaired vision, intellectual impairment, speech problems, thyroid problems, heart issues, and many more.
The first step to caring for a person with MD is to understand their type of muscular dystrophy and symptoms to understand how their disease will progress and to see which ways you can alleviate their day-to-day life.
How to Care for Someone With Muscular Dystrophy
The symptoms of MD are different for everyone, so you’ll need to provide care tailored to their needs. In most cases, though, those with MD will need some sort of mobility assistance to maintain some form of independence. Crutches, wheelchairs, walkers, canes, and scooters are all common for people with MD.
However, there is much more that goes into caring for someone with Muscular Dystrophy.
Understanding the Needs of Someone With Muscular Dystrophy
In general, one of the best ways to understand the needs of someone with MD is to have a robust knowledge of MD. First, attending the doctor’s visits of your client or loved one gives you a greater understanding of their current challenges and gives you an insight on what to anticipate. In addition, since there are many types of MD, having the knowledge of how a specific type of MD affects your client or loved one will be beneficial for caring for them.
Since MD affects people differently, it’s essential for monitoring and understanding how the group of diseases is progressing. Their mobility will decrease, and other symptoms will arise, so do your best to accommodate accordingly.
Assisting Your Loved One in Their Mobility
Decreased mobility is the most prominent symptom of MD, but there are ways to overcome this obstacle for your client or loved one. It’s important to encourage them to be as physically independent as possible, but inevitably they will need assistance with their mobility. Changes you can make to their day-to-day life include:
- Avoid stairs. Have everything, including bathrooms and bedrooms, on the first floor of their home if possible. Ramps are also useful for stairs near doorways.
- Railings throughout the home are great for maintaining balance when necessary. In addition, replacing door knobs with lever handles and getting a lower bed frame makes life a bit easier.
- Accessibility is key for improving the overall quality of life. Accessible shower stalls, wider doorways that can accommodate wheelchairs, and car modifications are all common.
- There may not always be accessibility options in places they frequent, like schools or work. It will be your responsibility, as well as theirs, to advocate for changes to these places to accommodate their needs.
Getting the Support You & Your Loved One Need
As the disease progresses and your loved one’s needs increase, it’s important to ensure that they receive the care they need. Hiring an outside caregiver or taking on more caregiving duties will be necessary to help them with daily activities like dressing, cooking, driving, and more. However, it is important to ensure that you don’t become overwhelmed and burnt out from constant caregiving.
In addition to hiring outside help, there are also resources available from the Muscular Dystrophy Association (MDA) that help in the process of providing adequate care.
The Importance of Finding Adequate Care
Muscular Dystrophy is an ongoing and progressive disease, so it’s in your best interest to not only support your client or loved one but yourself as well. As their disease progresses, the amount of care they need increases. Medical care, physical therapy, medication, and other healthcare-related needs will arise, so adequate care and attention are necessary for maintaining the quality of life.
How Home Care Agencies Help
Home care agencies, like JEVS Care at Home, work with loved ones and caregivers to ensure they have the resources and support necessary to care for those in need of extra care. We ensure our caregivers have the training they need to provide quality care and increase the quality of life for our clients. Caring for someone with Muscular Dystrophy can be difficult, but at JEVS Care at Home, we’re here to help and ensure you don’t have to do it alone.