Imagine if you will, that you woke up one morning with all your thinking and knowledge of the world unaffected but your ability to use words destroyed. You would not be able to even explain what had happened. Nobody would be able to understand what you were feeling, thinking, trying to explain…. You couldn’t talk with your loved ones, go to work, use the phone, pay your bills, organise your finances, even tell your doctor if you were ill……….this is the everyday plight of people with aphasia.
It is estimated that at least 17,000 New Zealanders have stroke-acquired aphasia – a language disorder, that leaves the intellect fully intact while eroding the ability to talk, read, write and understand what is being said. The very nature of the aphasia means that access to information regarding what it is, the implications of the disorder, and how to access support and therapy can be extremely difficult. There are many personal stories from people who have not been told that they have aphasia and who have ‘found out’ by fortuitous accident many years later. These people relate their feelings of concern that they had ‘lost their mind’ and tell stories of friendships disappearing and family relationships breaking down. Many tears are shed at the realisation that there is a name for their difficulties, and that there are other people who also share these difficulties and understand the struggle and frustrations involved.
Most people develop aphasia as a result of a stroke. Stroke is one of the greatest causes of major disability in New Zealand. Each day about 24 New Zealanders have a stroke and 6 or 7 will acquire aphasia. This number does not include those who suffer from aphasia as a result of other causes such as a head injury or brain tumour. The true extent of aphasia in New Zealand is not known as we do not have comprehensive statistics for those with aphasia.
Aphasia can affect people of any age, although it often affects older people. Aphasia affects not only the person with aphasia, but also their families and friends, and people in their community.
AphasiaNZ was formed in direct response to the expressed needs of people with aphasia, when a significant number met at the first New Zealand aphasia conference in late 2005. We have consulted widely and at length with those affected by aphasia in order to ensure that our vision and purposes reflect their wishes. In 2012 AphasiaNZ transitioned to a Charitable Trust so as to help all people affected by aphasia, and not just members. Aphasia is more common as Parkinson’s Disease, yet is a term which few have heard of, and even fewer have any knowledge about. AphasiaNZ is committed to changing this and to ensuring that people with aphasia do not find themselves isolated and marginalised by society.
If you think that you or someone that you know may have aphasia, there is help available. Please visit us at www.aphasia.org.nz for more information.