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Muscular Dystrophy Care

Muscular Dystrophy can be hard for both the client and their family, with the disability increasing substantially over time. Although there is no known cure for muscular dystrophy (also known as MD), treatment can be provided to ease the symptoms and complex care can help to retain a sense of normality and independence.
More than 70,000 people in the UK are diagnosed with MD, and there are many different types of the condition. Therefore, finding the right carer to suit you and your needs is of the utmost importance

Muscular Dystrophy can be diagnosed at any age depending on the type of disease. Whether you are looking for complex care for your child, a parent or even yourself; we understand that this can be a stressful and frustrating time.

At Four Oaks Healthcare we have years of experience supporting people diagnosed with MD and have put together some frequently asked questions to help you. If you need anything else, from advice to a care assessment, get in touch and an experienced member of the team will be happy to help.

What Is Muscular Dystrophy?

Muscular Dystrophy is a hereditary disease caused by alterations in the genes responsible for healthy muscle structure and function. These alterations mean that the cells that should maintain your muscles can no longer fulfil this role, leading to muscle weakness.

There are some forms of MD that will eventually become life-threatening, however, many diagnoses don’t have an impact on life expectancy. Unfortunately, there is no cure for this disease at this time, however, treatment is available to help manage the symptoms.

At Four Oaks Healthcare, our approach to caring for clients with >Muscular Dystrophy is the same as our approach to everyone that we care for. We aim to enable and empower our clients to feel as independent as possible and to never feel isolated by their condition.

What Are Some Muscular Dystrophy Symptoms?

Symptoms of the condition vary greatly depending on the type and progression of the disease and the age of the client. Some symptoms can include:

Muscle weakness
Difficulty standing
Clumsiness
Walking on toes
Inability to sit
Lung, heart and breathing problems

What Are The Different Muscular Dystrophy Types?

There are a variety of different types of MD here are some common forms:

Duchenne Muscular Dystrophy: This is one of the most common forms of MD. It is also one of the most severe and impacts boys in their early childhood. People with this form of illness usually live into their 20s and 30s.

Becker MD: This is closely related to Duchenne Muscular Dystrophy, however, it is less severe and develops in later childhood.

Emery-Dreifuss MD: This illness develops in either childhood or early adulthood. The life expectancy for people with this diagnosis is at least middle age.

Facioscapulohumeral MD: This can develop in either childhood or adulthood. It has a slow progression and doesn’t usually come with a life-threatening diagnosis.

Limb-girdle MD: This illness usually develops in late childhood or early adulthood. There are some variants of this illness that can be life-threatening, however, your doctor will be able to offer advice based on your specific circumstance.

Myotonic Dystrophy: This diagnosis can develop at any age. Someone with a severe form may have a shortened life expectancy but it is best to discuss that with your doctor.

Oculopharyngeal MD. This form of Muscular Dystrophy develops in patients between 50 and 60 years of age. Life expectancy shouldn’t be impacted by this diagnosis.

Testimonials

What Our Clients Think

From the moment I contacted this organisation, the staff have always been polite and incredibly helpful. They have had to step in at short notice when other providers have let us down. They have provided everything we have asked for in a thoroughly efficient and professional manner. All staff have been incredibly caring and thoughtful when approaching my mother’s needs. As a family, we are incredibly grateful for the service provided and I personally have already recommended the organisation to a potential client and a potential employee. We will have no hesitation in using these services again.
Sandra H
My parents have a live-in carer from Four Oaks Healthcare. This service has enabled my parents to stay together at home. Since the live-in carer started caring for my parents, it has enabled the family to relax and feel confident that our parents are safe and being well looked after. As a family, we can now visit our parents and spend quality time with them instead of time spent caring and worrying about their health and wellbeing.
The regular live-in carer is extremely competent in relieving the family of the burden and worry, she is kind and respects the wishes of our parents. When the regular carer has a holiday the replacement carer was also very good, keeping the continuity of care. We are extremely happy with the service provided by Four Oaks Healthcare.
Christine S
It was very apparent from the start when the first carer walked through the door for this first time just how caring and committed she was. This continued as we met mom’s other 5 carers. Every single one of them were fantastic with mom, taking time to speak to her, find out what she needed and always making sure that they cared for her with dignity. Also on numerous occasions, asking if we needed anything, which has got to be well over and above what is expected and so very much appreciated.To be brutally honest we were all dreading having strangers coming into the house but this was a very short-lived worry as everyone was so caring, so committed, so professional and so polite, putting us all completely at ease.

In our experience Four Oaks were outstanding in every way.

Chris J

Perhaps the biggest single plus about Four Oaks over previous care providers is the ability to provide continuity of carer. I am convinced my mother has benefited from the stability of having the same compassionate, competent and dedicated carer for the past eight months

Paul K

What Muscular Dystrophy Treatment Is Available?

There isn’t currently a cure for MD, however, there are a range of treatment options available depending on your personal diagnosis. Treatment options include

Assistance with mobility and breathing
Steroid medication
Ataluren
Creatine supplements
Corrective surgery

and more. You can seek advice on what the best treatment pathway may be for you with your doctor.

The level of care and support required will vary significantly between each individual, which is why our clinical nurses and clinical nurse specialists will carry out an assessment to ascertain what level of nursing care is needed. From this, a bespoke, flexible continuing healthcare plan will be created.

This plan will be continually monitored and altered depending on your care needs. Through this, our goal is to focus on providing continuing healthcare rather than care just for today

Why choose Four Oaks Healthcare for your Muscular Dystrophy Care?

Our complex carers are here to provide emotional support in addition to nursing care. Our focus is on person-centred care, taking our client’s lifestyles, hobbies and interests into account wherever possible. We strive to motivate our client’s by continuously taking part in activities and helping them to interact with others.

The continuing complex care we provide can be as hands on as you or your family wish. For younger clients, our service is usually required as support for the whole family, as parents wish to remain their child’s primary caregiver.

Your clinical nurse specialist will continually supervise the care you are receiving and ensure that the best carer is assigned for the role. We will strive to match you with a carer that suits yours or your loved one’s personality and needs in order to ensure that the time you or your loved one spend together is enjoyed.

If, for any reason, you are unhappy with your carer, then simply let us know and we will assign a new carer to you. With a continuing healthcare plan to improve the client’s standard of living, and a team of highly trained, dedicated and passionate nurses, we will strive to make you or your loved one as content and comfortable as possible.

As the client gets older, or family are not as able to be around, our care can increase. We offer regular care visits straight through to 24-hour live-in care, allowing us to provide all the nursing assistance you require in addition to companionship.

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