Living with CBD

There's currently no cure for corticobasal degeneration (CBD) and no treatment to slow it down, but there are lots of things that can be done to help manage the symptoms.

Care should be provided by a team of health and social care professionals working together. This is known as a multidisciplinary team. Members of your multidisciplinary team may include:

• a neurologist – a specialist in conditions that affect the brain and nerves
• a physiotherapist – who can help with movement and balance difficulties
• a speech and language therapist – who can help with speech or swallowing problems
• an occupational therapist – who can help you improve the skills you need for daily activities at home, such as washing, dressing, or getting around
• a social worker – who can advise you about the support available from social services
• a specialist neurology nurse – who may act as your point of contact with the rest of the team

There are currently no medicines that treat CBD specifically. Depending on the person's symptoms or complications, the following may be used:

• muscle stiffness of contractions – levodopa, amantadine, clonazepam, baclofen, gabapetin, or botulinum toxin injections to relax the muscles
• jerky movements – clonazepam or levetiracetam
• memory and related mental abilities – the medicines used to treat Alzheimer’s Disease may also be used in CBD, such as donepezil or memantine
• irritability or depression – medicines such as citalopram or trazodone
• sleep problems – short term use of temazepam, zopiclone,  melatonin or others medicines
• bladder problems and incontinence – medicines to relax the bladder, or help it empty more regularly may be needed, such as oxybutynin or miabegron
• pain and anxiety – simple painkillers and more specialist medicines like gabapeptin.
• bone strength – if people are prone to regular falling, osteoporosis (weak bones) and vitamin D problems should be ruled out or treated

In general, people with CBD are sensitive to medicine side effects. Doses may start low and be increased gradually. Some medicines should be avoided completely, such as haloperidol (a medicine used to treat some mental health problems).

Cognitive stimulation
Cognitive stimulation is a type of therapy used to treat dementia, and it may be helpful if a person with CBD has dementia symptoms. It involves taking part in activities and exercises designed to improve your memory, problem-solving skills and language ability..

A physiotherapist can give advice about how to remain safely mobile. Regular exercise can help strengthen your muscles, improve your posture and prevent stiffening of your joints. They can teach you breathing exercises to use when you eat, to reduce your risk of developing aspiration pneumonia (a chest infection caused by food particles falling into your lungs)..

Occupational therapy
An occupational therapist can give you advice about the best ways to increase your safety and prevent trips an falls during your day-to-day activities. For example, a person with CBD may benefit from having bars placed along the sides of their bath to make it easier to get in and out.
The occupational therapist can also arrange access to mobility equipement such as walking frames and wheelchairs. They can also arrange equipment to help the person or their carer manage other everyday activities such as washing, dressing, eating, and using the bathroom safely.

Speech and language therapy
A speech and language therapist can help assess and treat speech and swallowing problems.
They can teach people techniques to help make the voice as clear as possible and can advise you about suitable communication aids or devices that the person may need as CBD progresses.
A therapist can also advise you about different swallowing techniques and, working together with a dietitian, they may suggest altering the consistency of your food to make swallowing easier.

Diet and swallowing problems
You may be referred to a dietitian, who will advise you about making changes to your diet, such as including food and liquids that are easier to swallow, while ensuring that you have a healthy balanced diet. Feeding tubes may be recommended for severe swallowing problems, where the risk of malnutrition, weight loss, fatigue and dehydrated is increased. You should discuss the pros and cons of feeding tubes with your family and care team. The decision about whether and when to consider a feeding tube depends on the individual and should be discussed with a specialist.

Palliative care
Palliative care aims to relieve pain and other distressing symptoms while providing psychological, social and spiritual support. It can be offered at any stage of CBD, alongside other treatments.

Palliative care can be received:
• in a hospice
• at home or in a residential home
• on a day patient basis in a hospice
• in a hospital

Advanced care planning
Many people with CBD make plans for the future that outline their wishes about medical care and other decisions. They share these plans with both their family and the health professionals involved in their care. This can be useful in case you're unable to communicate your decisions later on because you're too ill. However, you don't have to do it if you don't want to.

There a number of organisations working in specific countries dedicated to providing information and support to people living with CBD. Read more: Patient Organisations