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Just been diagnosed? Here are some answers to questions you may have.

Why was I initially diagnosed with something else, or why did my diagnosis take so long?

PSP and CBD are unfortunately all too often diagnosed late. It is common for people to be diagnosed first with Parkinson’s disease, depression or stroke. These other illnesses are much more common and can mimic the early stages of these conditions. The way PSP and CBD progress over time, and do not respond well to medication is often a clue to the real diagnosis and leads to referral to a specialist centre.

What causes PSP?

Although a lot is known about the changes that occur in the brain during PSP, we do not yet know why it starts in the first place. It is not thought to be due to obvious lifestyle factors like smoking, nor to occupational hazards like pesticides and not thought to run in families.

Once PSP has started we know that brain cells in certain parts of the brain are damaged as a result of a build-up of a protein called tau.

Normal tau occurs naturally in the brain and is usually broken down before it reaches high levels. In people with PSP, it isn’t broken down properly and forms harmful clumps in brain cells which stop brain cells from working properly. The amount of abnormal tau in the brain can vary among people with PSP, as can the location of these clumps.

Is PSP hereditary?

Less than 1% of those with PSP have a family member with the same condition. Unlike some other neurological conditions, there does not seem to be a single genetic cause of PSP. However, the role of genetics in PSP is currently under investigation but the likelihood of the condition being passed on through genetic mutations is very small.

A variant in the gene for tau protein called the H1 haplotype, located on chromosome 1, has been linked to PSP, but this genetic variation is very common and is not enough to cause PSP on its own.

What are the likely symptoms I can expect with PSP?

Symptoms can vary a lot from person to person.

  1. Balance and movement
    Early signs may be the loss of balance which causes you to fall backwards. Movements may be very slow or your muscles may become stiff especially in the neck and upper body area. Tremor is rare in PSP.
  2. Cognitive change
    Difficulties with memory, learning, language, poor concentration, apathy, altered personality and low mood may be experienced. Some of these effects may be quite subtle or occur before other more obvious physical problems, while for others the change can be more pronounced and noticeable.
  3. Speech
    May become slow, quiet or speech may be slurred.
    Swallowing –Eating, drinking and swallowing difficulties are common.
  4. Saliva
    People living with PSP have a reduced swallow reflex, resulting in a build-up of saliva inside the mouth. Sometimes saliva can also be thick and difficult to swallow.
  5. Vision
    An inability to control eye and eyelid movement, including focusing on specific objects or looking up or down at something. Blurred or double vision and dislike of bright lights are common.

What are the likely symptoms I can expect with CBD?

CBD is a very individual condition and every case is unique. However, some common symptoms are listed below.

  1. Movement and mobility
    Difficulties with the slowness of movement. The inability to use one side of the body, for example, the loss of use of one hand (feeling that one limb has a will of its own). Jerky, awkward movements. Problems with balance. Tremor at rest.
  2. Behavioural changes
    There can be varying degrees of cognitive impairment in CBD. Perception is often affected as well as problems with memory and understanding. Difficulty carrying out tasks that require planning and thinking ahead. Personality changes, such as apathy, irritability and agitation.
  3. Speech problems
    Speech can become slow and slurred.
  4. Swallowing difficulties
    Coughing when eating and drinking is an indication that food or drink has ‘gone down the wrong way’ into the airway. If this occurs regularly, it can lead to chest infections or pneumonia.

Are PSP and CBD life-limiting?

The number of years you can live with PSP and CBD varies a lot from person to person. It is common to read that life expectancy is six to seven years from onset of PSP but this figure does not take into account how very variable the condition is. It may appear to move quickly if there are complications such as infection. Although there is no cure for PSP or CBD yet, there is much that can be done to improve quality of life for the person with the condition.

Can I drive?

Depending on your symptoms, you may be able to continue driving for a while with PSP or CBD. However, you are legally required to disclose your diagnosis to the DVLA and your insurer. You may need to be assessed at a driving centre if you wish to continue to drive. The DVLA is likely to seek a medical report from your GP or specialist. Even with permission to continue driving, you may decide to stop if you feel uncomfortable or no longer in full control of the vehicle. This can be a difficult decision, as it affects your independence and may feel very challenging.

Can I go abroad on holiday?

Yes. Holidays are important and there is no reason for you not to take a holiday with some extra planning. It is a good idea to take information with you about your diagnosis, your specialist, NHS number and PSPA so that if you do need medical help abroad it is easier for your overseas doctors to get the information they need. PSPA has information on travelling abroad with details of insurance companies and holiday providers.

Why has palliative care been mentioned to me?

Palliative care is care that helps people live their life as fully and as comfortable as possible when living with a life-limiting illness. It can offer support with symptom management as well as emotional and spiritual support.
Palliative care can be provided in a hospice, home, residential or nursing care. The earlier the palliative care team gets to know someone the more support you can offer.

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