When given a diagnosis of PCA, people naturally ask what will happen next. What challenges might they face and when? What support might be available?
On this page we have provided information on some of the early symptoms commonly associated with PCA as well as available support.
While we try our best to provide general guidance on how abilities may change during the course of PCA, it is important to bear in mind that not everyone will have the same symptoms or progress at the same rate. The experience of PCA will vary according to factors including age, general health and the disease underlying the PCA diagnosis.
Early symptoms
The first symptoms often include difficulties with seeing what and where things are (such as when driving or reading) and with certain everyday tasks.
Vision may be affected in the following ways:
- Problems with reading (for example, difficulty following lines of text, words jumbling up, or with certain text formats and sizes)
- Difficulties with coordination and spatial awareness (such as picking up objects, dressing, selecting the correct numbers on a telephone)
- Visual problems (including perceiving objects amongst clutter, double vision, difficulty focusing)
- Issues with judging distances and speeds (for example with moving traffic, walking onto escalators, descending stairs)
- Issues with recognising faces (including TV characters, friends, relatives)
- Light sensitivity and unusual colour experiences (such as washes of colour when driving at night)
PCA can affect people in different ways and vision is not always the first, or only, area of difficulty for people living with PCA.
Literacy, numeracy and certain coordination skills may also be affected and cause difficulties with the following tasks:
- recalling the exact spelling of words
- handwriting
- remembering the shape or name of particular letters or numbers
- mental arithmetic
- dealing with money and small change
- making gestures (such as waving or giving thumbs up)
- using particular tools, kitchenware or implements (for example scissors, cutlery, glasses)
- getting dressed
The pattern of symptoms that someone has depends on how and where the brain is affected.
There are many strategies that people living with PCA have found to be helpful in managing their symptoms. You can learn about some of these on our Living with PCA page. You may also find our FAQs section useful.
Community support
We run a PCA Support Group for everyone affected by PCA. This includes people with a diagnosis, carers, family and friends. Meetings provide an opportunity to meet others in similar situations as well as a range of professionals to get advice and support. Information on upcoming meetings can be found on our Meetings page.
As the symptoms of PCA vary so much from person to person it can be hard for people with PCA to receive the correct diagnosis. This can be frustrating and distressing. By increasing awareness and understanding of PCA, we hope to ensure that the medical profession, healthcare sector and communities are better able to support people affected by a diagnosis of PCA. Help us by sharing your stories and contacting us at contact@raredementiasupport.org.
