Specialist Care for Muscular Dystrophy and Huntington’s Disease in Bristol
Living with Muscular Dystrophy or Huntington’s Disease is often very distressing and frustrating for the person living with the disease, as well as their family and friends. Bristol Care Homes offer specialist care for both Muscular Dystrophy and Huntington’s Disease and we have qualified nurses on hand at each of our nursing homes in Bristol, 24 hours a day, 365 days a year.
As a nursing home with Muscular Dystrophy and Huntington’s Disease specialist categories, we have the experience needed to understand the impact of the diseases both physically and emotionally and we adapt care plans as and when needed to support and improve a person’s quality of life.
We have dedicated teams in each of our 4 nursing homes in Bristol and provide outstanding care to each of our residents every day. Our aim as a group of family-owned nursing homes is to provide excellence in all aspects of care for all of our residents, whatever a residents needs and circumstances in a homely and caring environment.
What is Muscular Dystrophy?
Muscular dystrophies (MD) is a group of genetic conditions that are inherited and passed down through families. The disease causes the muscles in the body to weaken which results in movement difficulties and more complex emotional and mental issues as the disease progresses. Over time muscular dystrophy can lead to an increased level of disability, however, there are many different types of MD with different symptoms and severity. Not every type of MD causes progressive and severe disability and some types don’t affect life expectancy. There are around 70,000 people in the UK who have MD, or a related condition that can start in children or adults.
MD is a progressive disease and the speed of its progression is different for every person. It normally starts by affecting a group of muscles before progressing to affecting more and more muscles within the body. Currently, there is no cure for MD, however, there are different treatments available that often help to manage and ease some of the symptoms.
There are some types of MD that can eventually impact the heart or the muscles used for supporting your lungs and breathing, and at this point, it can then become a life-threatening condition.
What are the different types of MD?
Duchenne MD – is one of the most common and severe forms of MD. It normally affects boys in early childhood and people with this type usually only live into their 20’s or 30’s
Myotonic Dystrophy – is a type of MD that develops at any age. Life expectancy is not always impacted, however, people with a severe form can have shortened lives
Facioscapulohumeral MD – is a type of MD that can develop in either children or adults, it is a type that progresses slowly and isn’t normally life-threatening
Becker MD – is a type of MD that is related to Duchenne MD but it develops later in childhood. It is normally not as severe and life expectancy isn’t normally affected as much
Limb-girdle MD – is a group of conditions that can develop in late childhood or early adulthood. For some people it can progress quickly and be life-threatening, however, for others, it develops more slowly
Oculopharyngeal MD – is a type of MD that usually develops between 50 and 60 years old. It doesn’t normally affect life expectancy
Emery-Dreifuss MD – is a type of MD that develops in children or young adults and most people’s life expectancy will be to at least middle age
Duchenne MD is the most common type of MD. In the UK, about 100 boys are born with Duchenne MD each year, and there are about 2,500 people living with the condition in the UK at any one time. Myotonic MD is the second most common type of MD, affecting around 1 person in every 8,000. Facioscapulohumeral MD is thought to affect around 1 in every 20,000 people in the UK, making it the third most common type of MD. This information has been sourced from the NHS here.
Why do you get Muscular Dystrophy?
There are specific genes involved in making the proteins that protect our muscle fibres and MD occurs when one of these genes is defective. The defective genes are normally inherited and they interfere with the production of proteins needed to form and maintain healthy muscles in our bodies. Over time this impacts a person’s ability to function properly and look after themselves physically. Each form of MD is caused by a genetic mutation particular to that type of disease.
If there is a family history of MD then you can ask your GP to refer you for genetic testing which will evaluate the risk of you developing the condition, and, or having a child with it.
What are the symptoms of Muscular Dystrophy?
The main symptom of MD is muscle weakness which gets progressively worse. Signs and symptoms can begin at different ages and in different muscle groups and this largely depends on the type of MD you have.
Specific Muscular Dystrophy Symptoms can include:
- Falling over or stumbling frequently
- Difficulty in getting up and out of bed or up and out of a chair
- Difficulty and uncoordinated running and jumping
- Waddling gait
- Walking on tiptoes
- Larger calf muscles
- Muscle pain
- Muscle stiffness
- Learning disabilities
- Growth delay for younger children
How do you know if you have Muscular Dystrophy?
The above symptoms can be a sign you have MD if they are ongoing. If you are concerned you should always seek advice from your doctor as there are tests that can be done to identify it.
Your doctor will talk to you about how you are feeling and the symptoms you are experiencing and will normally do an initial examination and then refer you to a specialist consultant for further tests if they think they need to.
What are the tests to diagnose Muscular Dystrophy?
There are different ways of diagnosing the different types of MD, some of them include:
- Discussing and investigating any symptoms
- Discussing family history and family history of MD
- Physical examination
- Blood tests
- Electrical nerve and muscle tests
- Muscle biopsy
Care after the diagnosis of Muscular Dystrophy
Care after the diagnosis of MD is really important both physically and emotionally. It is a tough diagnosis to hear your muscles and mobility will get progressively weaker and worse and it is really important that you, family members and friends receive support and help physically and through support groups.
Specialist Treatments for Muscular Dystrophy
There is no cure for MD, however, medication and therapy that has been developed in recent years can really help to manage the symptoms and often slow the progression of the disease.
Treatments for Muscular Dystrophy can include:
- Specialist exercises, physiotherapy and physical aids to maintain strength and physical muscle ability
- Surgery is sometimes offered to correct postural deformities, such as scoliosis which can develop in early years MD
- Steroids can help to improve muscle strength
- ACE inhibitors and beta-blockers can be prescribed to treat heart problems
- Support groups and counselling which hello to deal with the practical and emotional impact of MD
New research is looking at ways in which the genetic mutations and damaged muscles associated with MD can be repaired and there are some really promising clinical trials for Duchenne type of MD.
MD can affect you and your carer emotionally, as well as physically. There are support groups and organisations that can help you understand and come to terms with your condition and they can also provide useful advice and support for those carers of people with MD.
There are several UK charities that offer support for people affected by MD and you can also ask your GP or other healthcare professionals treating you about local support groups.
What are the aims of Specialist Care for Muscular Dystrophy care?
Bristol Care Homes offers specialist care for people with Muscular Dystrophy. The MD care that we offer at Bristol Care Homes is focused on easing the symptoms of the disease whilst supporting an individual physically and emotionally with day to day life. We have specialist nurses on duty 24 hours a day, 7 days a week in all of our nursing homes as well as experienced careers who understand the difficulties with the disease and the care needed. We support the treatments which relieve the symptoms of MD, including physiotherapy, exercises and walking aids. We work alongside your GP and specialist hospital team to ensure an individual’s care plan is regularly reviewed and supports the mental and physical well being of an individual as it progresses.
What is Huntington’s Disease?
Huntington’s is a rare and inherited progressive disease that causes the breakdown (degeneration) of nerve cells in the brain. It has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders. It is an inherited disease and unfortunately it is likely to get worse over time.
What is the treatment for Huntington’s Disease?
There is no cure for Huntington’s disease or any way to stop it from getting worse at this time, however, certain treatments and support will often reduce some of the symptoms and problems it causes.
Treatment can include:
- Medication prescribed for depression, mood swings and involuntary movements
- Occupational therapy to support a person to continue with everyday tasks which their brain is making harder for them due to the disease
- Speech and language therapy to support communication and feeding problems as the disease progresses
- Physiotherapy and exercises to help with movement and balance
- Support groups and counselling to help with the mental aspects, progression and debilitation of the disease
Research is underway to find new treatments for Huntington’s disease and positive progress has been made in identifying ways of slowing down or halting the condition by “switching off” the faulty gene that causes it. There are treatments now going through clinical trials and if they are found to be safe and effective, they could be available in years to come.
Why do you get Huntington’s Disease?
Huntington’s disease is caused by a faulty gene that is passed down through families which results in parts of the brain being damaged over time. If a parent has Huntington’s gene then there is a significant chance it will be passed down to a child or children.
- There is a 50% chance of children developing the condition – affected children can also pass the gene to any of their children
- Very occasionally, it is possible to develop Huntington’s disease without having a history of it in a family, however, this is normally known when a parent has never been officially diagnosed with it
What are the symptoms of Huntington’s Disease?
The symptoms of Huntington’s Disease normally, not always start between 30 and 50 years of age.
- Concentration lapses and memory loss
- Falling, stumbling and clumsiness
- Involuntary jerking or fidgety movements in the limbs or body
- Mood swings
- Personality changes
- Issues swallowing, speaking and breathing
- Difficulty in moving and walking
Full-time nursing care is almost always needed in the later stages and Bristol Care Homes are specialists in the care of Huntington’s Disease with qualified nurses available 24 hours a day.
How do you know if you have Huntington’s Disease?
Symptoms are different for every person and early symptoms can include:
- Concentrating issues
- Loss of memory
- Depression including low mood, a lack of interest in things, and feelings of hopelessness
- Falling, stumbling and clumsiness
- Mood swings including irritability and, or aggressive behaviour
If you have any symptoms you are concerned with you should book an appointment to see your GP. They will talk to you about your symptoms and do some initial tests. They may then refer you to a specialist for further and more detailed tests at a hospital.
Huntington’s disease develops over time and the symptoms can include:
- Involuntary jerking and, or fidgety movements
- Speech and communication problems including speaking clearly. In the later stages, communication can be very difficult and very frustrating
- Drinking and eating problems, problems swallowing solid food
- Lung infections (pneumonia) from food going down the wrong way
- Progressive slow and, or rigid movements
- Changes in personality
- Problems with breathing
- Movement difficulties including sitting up, getting out of bed and getting out of a chair
People with Huntington’s disease find their symptoms increase as time goes by and daily activities get more and more difficult, often they will end up needing specialist full-time nursing care from a nursing home like Bristol Care Homes.
What are the tests to diagnose Huntington’s Disease?
- Neurological exam and patient history.
- Diagnostic imaging (brain imaging, such as computed tomography (CT), magnetic resonance imaging (MRI))
- Genetic testing
- Prenatal testing is an option for people who have a family history of HD if they are concerned about passing the disease to a child
If there is a history of Huntington’s disease in your family your doctor can arrange a test which will tell you if you will get it, although many people choose not to have the test.
Specialist Care Treatments for Huntington’s Disease
Currently, there is no cure for Huntington’s disease or any way to stop it from progressing, however, progress is being made through research and there have recently been some promising results. There are other treatments and support that can help reduce some of the problems and symptoms caused by the disease both physically, mentally and emotionally. Huntington’s disease clinics run by specialist doctors and nurses offer different treatment options and support.
Medication to help ease some of the symptoms includes:
- Antidepressants for depression
- Medication to ease mood swings and irritability
- Medicine to reduce involuntary movements (jerking or fidgety movements)
- Occupational therapy to help with alternative ways of completing everyday tasks, adaptations to your home environment as well as equipment to support these tasks
- Physiotherapy support the active movement of muscles and often the disconnect between the brain and the body
- Help and advice with eating. At some points, a feeding tube may be needed
- Speech and language therapy to support communication
- Support groups and counselling
You can find lots of useful information and advice from the Huntington’s Disease Association here.
What are the aims of Specialist Huntington’s Disease?
Bristol Care Homes has the experience and specialist care category to care for people with Huntington’s disease. We have qualified nurses who understand the needs of someone living with the disease and we work closely with GP’s and hospital teams to adapt care plans when it is needed. We support exercise and physiotherapy plans, diet requirements and our chefs will adapt meals and snacks to ensure they get enough calories and nutrients in sometimes smaller portions, as well as ensuring they still enjoy their food. We commit to supporting them and their family both physically and emotionally to be as independent as they can for as long as they can.
To find out more about our Specialist Care in Bristol contact us today. We can help you with any questions you may have and would welcome you and your loved ones to come and meet with us and our compassionate team.