Meet people living with aphasia

Rita Harris

Primary Progressive Aphasia

Most people with aphasia can expect some improvement in speech over time. People with primary progressive aphasia haven’t had a stroke, accident or tumour.  They will continue to lose their ability to speak, read, write, or understand what they hear. The cause of this very rare condition is not fully understood. Rita Harris explains what living with this condition is like.

I’m 80 years old and I’m a retired college administrator. I was a busy extrovert, used to public speaking – and heckling!

During 2003, I became aware that my speech was becoming more hesitant. I had to introduce a speaker to a small gathering. I hadn’t forgotten their name – which was very straightforward – but found I just couldn’t articulate it easily.

What is the problem?

Regular scans showed no sign of stroke or other brain damage. Specialists usually refer to my condition as “primary progressive aphasia”, for which they can find no cause.

Sometimes I find in my medical notes the terms ‘dysarthria’ or ‘an apraxia of speech’, but what’s in a name? I know I have slow and effortful speech and it’s getting worse. That’s sufficient description - it doesn’t need a latin name.

It’s got to the stage where I often have difficulty in making myself understood. Neurologists I have seen find my case ‘atypical’ and are surprised I don’t present with any other language or general cognitive or neurological problems (yet). They haven’t got any treatment, much less a cure. I have had courses of speech therapy in both neurological and ENT departments but the therapists felt I could manage communication myself to the best of my ability and their efforts weren’t much extra help.

No treatment, no cure

I am disappointed that I wasn't offered any non-medical support. The medical personnel were interested in my condition but they didn't enquire if I have difficulty on the telephone, need counselling or help of any kind.

I have found Connect through my own research. They can offer me some support but it is limited because of the distance involved to access facilities. However, I receive their newsletters and have joined them on Facebook. I have found a local Speakability group too.

How I communicate

So far, I’ve not resorted to writing things down as an alternative to conversation. It seems to me, regardless of how unintelligent (or drunk!) I sound, once I stop speaking I really will have given in to this disability. People I know still show patience, and, for the present, people I don’t know seem willing to do the same. Initially, I say I’ve got a speech problem and continue from there. I’m not ashamed of asking for special consideration! Some think I must be deaf as well as slightly simple and speak loudly and slowly: I’m grateful for their well-meant attempts to cooperate. In face-to-face situations, nods, shrugs and other gestures come in useful but on the phone (I can’t always avoid the phone) that’s not possible.

Keep calm and carry on

I suppose I’m lucky that the aphasia has progressed so slowly up to now. Although I ‘keep calm and carry on’ there’s no disguising how frustrated and depressed I sometimes feel, especially the more I learn about progressive aphasia and how sufferers can expect other deficits as the disability goes on, such as difficulties with swallowing, other language and neurological problems, including personality changes and symptoms of dementia. In the wee small hours I contemplate a pretty bleak future.

Do you have primary progressive aphasia? We would like to hear from you. Perhaps you would like to meet others for support? Please contact us on info@ukconnect.org or call 020 7367 0840

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