Corticobasal degeneration (CBD) is a rare condition, so you will probably be referred to a specialist centre that has experience in CBD, such as the Institute of Neurology in London.
After discussion with the staff, a treatment plan for your care should be drawn up. The plan will probably involve:
- providing relief from the symptoms of CBD when possible
- giving you support and advice to make your life easier
Your care team
As CBD can have an impact on many different aspects of your life and health, treatment is provided by a team of health and social care professionals working together. This is known as a multidisciplinary team (MDT).
Members of your care team may include:
- a neurologist - a specialist in treating conditions that affect the nervous system
- a physiotherapist - a therapist who helps people improve their co-ordination and range of movement
- a speech and language therapist
- an occupational therapist - a therapist who helps people improve the skills and abilities they need for daily activities, such as washing or dressing
- a psychologist
- a social worker - they will be able to advise you about the support available from social services
- an ophthalmologist or orthoptist - specialists in treating eye conditions
- a palliative care specialist - a healthcare professional who specialises in treating people with terminal conditions
- a specialist neurology nurse - they will usually be your first point of contact with the rest of the team
While there is no medication to treat CBD directly, there are some medications that can help control some of the condition's symptoms. These are described below.
Memantine is a type of medication known as an NMDA antagonist, which was designed to treat Alzheimer's disease. It helps reduce abnormal brain activity, which helps slow the progression of Alzheimer's disease and improves mental and physical functions.
Some experts have suggested that memantine may have a similar effect in people with CBD.
There is limited evidence that memantine is effective or safe in people with CBD. Therefore, you should discuss the potential pros and cons of treatment with memantine (or possibly other medications used to treat Alzheimer's disease) with your care team.
Side effects of memantine include:
- shortness of breathe
Levodopa is a medication that is often used to treat Parkinson's disease. While it is usually less effective for people with CBD, it may provide short-term improvement in muscle stiffness and rigidity in some people.
Levodopa works by increasing the levels of a brain chemical called dopamine, which transmits messages from your brain that control and co-ordinate your body's movements. Therefore, an increase in dopamine levels may lead to a corresponding improvement in muscle control.
Common side effects of levodopa are:
However, these side effects usually pass within a few weeks, once your body becomes used to the medication. Other side effects can occur if you take levodopa on a long-term basis and include:
- involuntary physical movements, such as jerking
- mood changes - for example feeling more anxious
Baclofen is a type of medication that can be used to treat muscle stiffness and rigidity. It works by blocking some of the nerve signals that cause muscle stiffness.
Side effects of baclofen may include:
- an increased need to urinate
These side effects usually pass once your body becomes used to the medication.
Clonazepam is a type of medication that can be used to treat symptoms of muscle spasms.
Side effects of clonazepam may include:
- muscle weakness
- loss of co-ordination
As with baclofen, the side effects of clonazepam usually pass once your body has become used to the medication.
You should avoid drinking alcohol while you are taking clonazepam because it can make the side effects worse, as well as magnifying the effects of the alcohol.
A physiotherapist can give you advice about how to make the most of your remaining mobility by using exercise. Regular exercise can help strengthen your muscles, improve your posture and prevent stiffening of your joints.
Your physiotherapist will also be able to give you advice about any aids that could help you, such as a walking frame or shoes designed to reduce your risk of slipping and falling.
Cognitive stimulation is a type of therapy that is used to treat the symptoms of dementia. It involves taking part in activities and exercises that are designed to improve your memory, problem-solving skills and language ability.
Cognitive stimulation is provided by a trained carer and usually consists of two 45-minute sessions a week. During these sessions, you will be involved in discussions about a variety of topics, as well as taking part in word and memory games, and other activities, such as identifying pictures of famous people.
An occupational therapist (OT) can provide advice about the best ways to increase your safety and prevent trips and falls during your day-to-day activities.
For example, many people with CBD benefit from having bars placed along the sides of their bath to make it easier to get in and out.
The occupational therapist will also be able to spot potential hazards in your home that could lead to a fall, such as poor lighting, badly secured rugs and crowded walkways and corridors.
Speech and language therapist (SLT)
A speech and language therapist (SLT) can help improve your speech and swallowing problems. They can also teach you a number of techniques to make the most of your speech function by making your voice as clear as possible.
As CBD progresses, you may need some sort of assistive technology to help you communicate. A range of communication aids is available, and your SLT will be able to advise you about the devices that will be most suitable for you.
Your SLT should also be able to help you if you have difficulties swallowing food and water (dysphagia).
For example, they should be able to teach you exercises to help stimulate the nerves that are used to trigger your swallowing reflex and strengthen the muscles that are used during swallowing.
A number of physical techniques can also be used to make swallowing easier. For example, some people find that moving their chin forward while swallowing helps prevent any food from entering their airways.
Diet and severe dysphagia
As the symptoms of your dysphagia become more severe, you will require additional treatment to compensate for your swallowing difficulties.
You may be referred to a dietitian. They will advise you about making changes to your diet, such as incorporating food and liquids that are easier to swallow while ensuring you receive a healthy, balanced diet.
For example, mashed potatoes are a good source of carbohydrates, while scrambled eggs and cheese are high in protein and calcium.
Feeding tubes may be recommended in severe cases of dysphagia that increase your risk of developing malnutrition and dehydration. You should discuss the pros and cons of feeding tubes with your family and care team, preferably when your symptoms of dysphagia are at an early stage.
There are two types of feeding tubes:
- nasogastric tube - a tube is passed down your nose and into your stomach
- percutaneous endoscopic gastrostomy (PEG) tube - a tube is surgically implanted directly into your stomach, which passes through a small incision on the surface of your stomach or abdomen
Nasogastric tubes are designed for short-term use and last for 10-28 days before they need to be replaced. PEG tubes are designed for long-term use and last for up to six months before they need to be replaced.
Many people with CBD draw up an advanced directive. An advanced directive is where you make your treatment preferences known in advance in case you cannot communicate your decisions later because you are too ill.
Issues that can be covered by an advanced directive include:
- whether you want to be treated at home, in a hospice or in a hospital once you reach the final stages of CBD
- what type of painkillers you would be willing to take
- whether you would be willing to use a feeding tube if you were no longer able to swallow food and liquid
- whether you are willing to donate any of your organs once you die (the brains of people with CBD are particularly useful for ongoing research)
- if you experience respiratory failure (loss of lung function) due to aspiration pneumonia, whether you would be willing to be resuscitated by artificial means, such as having a breathing tube inserted into your neck
Your care team will be able to provide you with more information and advice about advanced directives.