Due to the rarity of corticobasal degeneration (CBD) it is likely that you will be referred to a specialist centre that has experience in CBD, such as the Institute of Neurology that is based 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
- providing you with support and advice to make your day to day life easier
Your care team
As CBD can have an impact on many different aspects of your life and health, the treatment of CBD is provided by a team of health and social care professionals working together. This type of team 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 to improve their co-ordination and range of movement
- a speech and language therapist
- an occupational therapist - a therapist who helps people to improve the skills and abilities that they need for daily activities, such as washing or dressing
- a psychologist
- a social worker - who will be able to advise you about the available support from social services
- an ophthalmologist and/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 - who will usually be your first point of contact with the rest of the team
Medication
While there are no medications that can be used to directly treat CBD, there are some medications that can help control some of the condition’s symptoms. These are discussed below.
Memantine
Memantine is a type of medication known as NMDA antagonists that was designed to treat Alzheimer’s disease. It helps reduce abnormal brain activity, which helps slow the progression of the disease and improve mental and physical functions.
Some experts have suggested that memantine may have a similar effect in people with CBD.
There is limited evidence about whether memantine is either effective or safe in people with CBD. So 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:
- headache
- drowsiness
- dizziness
- shortness of breathe
- constipation
Levodopa
Levodopa is a medication that is often used to treat Parkinson’s disease. While it is usually less effective for people with CBD, for some people it may provide short-term improvement in muscle stiffness and rigidity.
Levodopa works by increasing the levels of a brain chemical called dopamine by transmitting messages from your brain that control and coordinate 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 use 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
- confusion
- mood changes - for example, feeling more anxious
- drowsiness
Baclofen
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:
- dizziness
- drowsiness
- constipation
- diarrhoea
- headache
- an increased need to urinate
These side effects usually pass once your body becomes use to the medication.
Clonazepam
Clonazepam is a type of medication that can be used to treat symptoms of muscle spasms.
Side effects of clonazepam may include:
- fatigue
- muscle weakness
- dizziness
- loss of co-ordination
- light-headedness
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 clonzepam because it can make the side effects worse, as well as magnifying the effects of the alcohol.
Physiotherapy
A physiotherapist can provide you with advice about how to make the most of your remaining mobility by using exercise. Regular exercise can help to strengthen your muscles, improve your posture and prevent stiffening of your joints.
Your physiotherapist will also be able to provide advice about any aids that could be of benefit to you, such as a walking frame, or shoes that have been specially designed to reduce your risk of slipping and falling.
Cognitive stimulation
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.
Occupational therapy
An occupational therapist (OT) can provide advice about the best ways of increasing your safety and preventing 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 to 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 to communicate. A range of communication aids are available, and your SLT will be able to advise you about the devices that will be most suitable for you.
Treating dysphagia
Your SLT should also be able to help you if you have difficulties with 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.
There are also a number of physical techniques that can be used to make swallowing easier. For example, some people find that moving their chin forward while swallowing helps to 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, who will advise you about making changes to your diet, such as incorporating food and liquids that are easier to swallow while ensuring that 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 that is passed down your nose and into your stomach
- percutaneous endoscopic gastrostomy (PEG) tube - a tube that 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.
Advanced decisions
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 pnuemonia, 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.
