Signs and Symptoms of Prion Disease

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  • Caring for a Person with Prion Disease
Whilst there is no proven treatment for prion disease, it is possible to alleviate specific symptoms through medication, other therapies, trying out different caring strategies and adapting the environment. 
  • Behavioural Symptoms
Often mood disturbance e.g. aggression or loss of interest and personality changes persist into the illness.  Anxiety and depression are fairly common features.  There may also be a lack of social judgement and dis-inhibition.  People may prefer to keep to familiar routines, changes in the regular daily pattern of events, or new faces may cause distress and anxiety.
  • Communication Problems
Speech tends to become slurred (dysarthria) and quiet and as a result speech may become hard to understand, making communication difficult.  There is often a reduction in the content of language, word finding difficulties and there may be repetition of words or sentences.  Eventually the person can become mute. 
Problems develop with memory and thinking and there is often a general decline in intellect.  There may be forgetfulness of day to day events, often accompanied by disorientation and poor concentration or attention.  Everyday skills that we take for granted may be lost.
  • Movement Problems
Initially there may be a disturbance in balance and gait, leading to unsteadiness (ataxia).  Walking will therefore be affected and so extra care will have to be taken to try to prevent falls.  Involuntary rhythmic muscle contractions leading to jerky movements (myoclonus) and difficulties coordinating hand movements leading to apparent clumsiness.  Shakiness (tremor) and stiffness (rigidity) are often seen.  As movements become increasingly uncoordinated the individual will need help with carrying out their daily activities, for example, personal hygiene and use of the toilet.
  • Swallowing Problems
With the progression of the disease there may also be difficulty in swallowing.  There are a number of strategies, which may make swallowing easier and an assessment by a speech and language therapist can identify problems and give advice regarding strategies to help.
  • Visual/Perceptual Problems
Visual problems include double vision and difficulty moving eyes to follow objects. Hallucinations are fairly common.  There may be a failure to understand and correctly interpret visual stimuli.  There may be misidentification of objects/people, whereby something/someone may not be recognized accurately.
Very occasionally a person may suffer from seizures in the later stages of the disease. Medication is available to help control seizures should they occur.

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