PROGRESSIVE NON FLUENT APHASIA

Tell us a bit about yourself here.
Thanks for your kind help and useful suggestions

My wife can read and write (although not 100% accurate).
In that case, she would definitely benefit from some systems to make communication easier. Makaton is very easy to learn, as it's designed for people with LD.
My son doesn't need to use it now, but as a family it's still incredibly useful. If you want to tell someone in the family 100 yards away that dinner is ready, when they are amongst a crowd of people, it's so quick. (We own some vintage steam engines so attend lots of shows in summer).
Hi Thomas. That is a hard place to be.

I’m going to relate what we use here, although I recognise that most you will be doing and some will not be relevant to you - apologies if it is not helpful.

My husband has dysphasia following a brain tumour and treatment. He can talk fluently about abstract things -‘how are you?’ ‘we had a good time’ - but cannot name people or things - so not ‘put the cup on the table’ or ‘John came to see me’. He tends to mix up I/you and he/she etc. We do a version of Twenty Questions a lot, but yes/no is not reliable, which leads to some interesting situations :)

The Speech and Language team has tried to tap into alternative ways of word-finding, without success. So they have provided a key ring with small cards holding essential information (name, hospital number, date of birth, my mobile ‘phone number). He has, instead of the flash cards mentioned above, laminated sheets with useful words/pictures, grouped by subject (e.g. foods, drinks, rooms in the house, clothes, things he uses regularly, likely medical symptoms, family members, feelings). He has a notebook and pen (but one of those erasing message pads would do) where he can sometimes write but often draw what he is trying to name. The therapist suggested colours pencils to help eg to distinguish between similar things. (You need to bear in mind that naming 'stuff' looms quite large for us as he has recently had a stroke as well, so I tend to over-emphasise this!)

We also have a laminated sheet of instructions for ‘How to communicate with X’ to show to, in particular, medical professionals meeting him for the first time.

As his carer, my greatest worry is having the responsibility for someone who cannot ask for help in an emergency or if anything happened to me. So he has a pendant alarm and the first contacts are me and our close family. They don’t live nearby but do know our needs and who to call to check on us. I carry a Carer’s card provided by our Council. It has a registration number and the 24/7 emergency Council ‘phone number. I have registered his care needs and our family ‘phone numbers so if I am in an accident/taken ill someone will be called. When he could still walk, someone advised me to keep a ‘photo of him handy, in case we ever got separated and I lost him (he does not have dementia, but it was a worry).

He finds it very hard to read and understand, so I always ask for the clear text version of any leaflet he is given. I also ask for the text to be emailed to him because on a tablet he can use the text to speech reader so he can listen to it as many times as he needs.

You mentioned the impact on your relationship. That is a hard one. I find I use up most of my energy on day-to-day stuff, like food and medical needs, so there is not much left for personal conversations. I treasure good moments. There was a day after he came out of hospital, when my husband suddenly said ‘I love you’ one night. I have to remember that that represents the true person, not the bad times when we cannot communicate at all.

Every good wish to you.
The prognosis for PNFA is deterioration to the point where any form of communication is lost.
Complications emerge over time e.g. pneumonia. Associated diseases such as MND and PSP can also develop.
There is no cure available or medication to alleviate the symptoms.

So the situation is dire.

SLT have discharged her as no further therapies can help.
Hi Thomas, Fellow Traveller,
PNFA is one of those "rare dementias". I am very sorry to hear of your wife's suffering and yours too. Such a cruel disease.
My mother has recently been diagnosed with it. There is an organisation called something like Rare Dementia Support and there are some groups that meet regionally. There are meetings/events at, I think, Kings College in London - or maybe UCH.
I haven't managed to get to any of them. I did a free OU course that had some useful links. Quite honestly the outlook was so grim and the knowledge that it might be hereditary was too depressing to pursue. My Dad is terminally ill too.

Mum reads avidly. She can barely write any more. When she's under stress her ability to speak seems worse.
Some good ideas here re Makaton and the picture card thing. I keep meaning to make more effort to engage Mum with e.g music but I'm worn out with trying to keep the rest of their show on the road.

We are not alone. Reaching out is hard but each of us has made a start.
What do you enjoy doing that is completely unrelated to illness?