13 April 2010

Sunshine Coast aphasia clinic – at last!

Off to Maroochydore this morning for the second in a series of eight Adult Communication Group workshops in Maroochydore. This clinic, specifically designed for aphasia sufferers and their partners, is a welcome and long-awaited regional initiative of the Queensland Department of Health.

The program has been developed by four speech pathologists based at various locations on the Sunshine Coast. Three of them are Interagency Speech Pathologists with Queensland Health and the fourth is from Eden Rehabilitation Hospital in Cooroy. Working in pairs, the four speech pathologists take turns organising and facilitating these weekly two-hour sessions, which are held in a meeting room of the Maroochydore Library.

Last week was our first session. Eight couples are participating. Most of the partners with aphasia have had a stroke which has caused their brain damage, but at least one person has aphasia as a result of a brain injury that damaged the language-generating areas of his brain. A seems to be the only person who has primary progressive aphasia. But all of us are living with aphasia, and it’s a lively and interesting group, with a wider age range than most groups we’ve participated in.

Some of the carers are very articulate, too, and frustrated by the fact that for most of them this is the first time they have had access to any group specifically designed for aphasia sufferers and their partners. Some said they and their partners had come all the way through the post-stroke hospital experience without ever hearing the term ‘aphasia’ used, without having their specific communication problems analysed and without being prescribed appropriate therapies to address their communication difficulties.

I think we will enjoy these clinics. And if the first two sessions are anything to go by, the sessions will be very well organised, too. The presenters prepare relevant and interesting activities and the handouts they distribute include visual clues as well as text. This shows their awareness that some people with aphasia can’t make much sense of written language.

Such is the case with at least one participant in this clinic, for example, whose command of oral language seems almost fluent by comparison with A’s. Yet he said he has difficulty making sense of written language. A, on the other hand, often has great difficulty speaking in even simple sentences, but he can read at almost his pre-aphasia level. Welcome to the Planet Aphasia**, where we all must now live.

In today’s session, we learned more about each of the couples – especially the partners who have aphasia. Each of them had to bring in an item to demonstrate an interest or activity that is or was important in their life. A brought in a couple of his scrapbooks containing clippings, theatre programs and other memorabilia documenting his 50+ years working in Australian theatre.

One man from France, married to a local woman, has lost most of his second language (English) as the result of his stroke, as well as having difficulties with his native French. He brought along a variety of small percussion instruments and led us all in ‘playing’ and singing several rounds of Frère Jacques (his name), which he himself could sing without hesitation – a phenomenon shared by A, who sings along on most days to familiar songs he has copied onto his computer specifically for this purpose.

Another participant brought in a selection of beautiful tropical flowers that he and his wife grow on their seven-acre property in the Sunshine Coast hinterland. One flower was a gorgeous tiger-striped orchid which trailed numerous thin tendrils some 10 cm long. He didn’t know the name of it but we took a photo which someone will try to identify.

One man showed photos of the pizza oven he had built in his backyard. He explained that he made pizzas for friends and family there, but for himself he mainly used the oven to prepare a classic Italian treat: slices of oven-dried pork, the exact name of which I can’t recall though when he said it I remembered having seen this in a delicatessen’s smallgoods section.

Everyone’s ‘object’ provoked good discussion, which was the main aim of the activity. And each week the organisers appoint one participant as timekeeper, whose job it is to make sure no segment of the agenda goes over time. That meant we had time left for each of our partners to mime or draw a given phrase which the rest of us had to guess – what we called our Spics ‘n Specs segment. Another volunteer makes brief notes of each week’s session and prepares minutes – no small task for anyone with aphasia who might take hours to write even a short paragraph.

What with morning tea and lots of chit-chat, the two hours fly by. I can’t help noticing how ‘at home’ I feel with these Sunshine Coast couples, too. Many of them live or have lived, like us, in semi-rural situations. And perhaps for that reason, this clinic has a different atmosphere to that of the clinic we attend in Brisbane. I don’t mean to imply the Brisbane clinic isn’t very good; it is. But not surprisingly, in Brisbane I always feel a little ‘at sea’, as we live a different kind of life up here on the Sunshine Coast than most of the people who attend that clinic. And whenever I go to the city for any reason, I tend to feel a little exotic. People there are friendly enough, but A and I have a different set of references, it seems. Up here on the Coast, however, we ‘fit in’ more easily. Maybe that’s more important to me, as a carer who needs to connect with others. But it’s a comfortable feeling of belonging. And with loneliness a hallmark of being a full-time caregiver, ‘belonging’ is no small feat.

Whatever the reason, we are delighted to finally be meeting a group of people from our region who, like us, have to learn to live with aphasia.


** From the Planet Aphasia is the title of an excellent blog by the American carer of a partner who has profound aphasia and apraxia. Check it out; it’s well worth a read!


Anonymous said...

It's nice to be with a group of people who are going through a similar difficulty. Since moving to Woodgate I have less contact with the parents of autistic kids, though I do have online contact - I miss the conversations. I'm glad you enjoyed the clinics.

Stafford Ray said...

Can you tell us A's stage name? Some of us may remember him from his years in the theatre.

Chartreuse said...

Gabrielle, I agree re the benefits of contact. Sometimes we 'carers' at the clinics get together in a separate room and it's always very enriching to share experiences (and coping strategies).

Stafford Ray, A was usually billed as 'Alan Harvey', though that was not the correct spelling of his first name. It just 'evolved' that way. He started out as a stage manager in Sydney, though in early days that often meant doubling up in small parts or filling in for sick or absent actors. His main work was as a director for theatre management groups all over the country (J C Williamson etc.) He did more acting in later years, and then a lot of ABC scriptwriting, finishing up in arts management (Australia Council, Tas Arts Advisory Board etc.) I will be posting excerpts of his memoires and some of the photos and memorabilia from his 13 scrapbooks documenting a long life in Australian theatre work.

Square and Circle Adventures said...

I would like to learn more about the communication groups. Who could I ask about the funding and the cost?

Chartreuse said...

Square and Circle Adventures: The clinic I talked about in this post is set of eight weekly clinics (each of two hours) sponsored by our Queensland (state) Dept of Health. The couples participating have all been referred by a local speech pathologist, and the clinic is free. The other clinic we attend is a weekly 2-hour clinic at the University of Queensland, which forms part of their training program for speech therapists in the Faculty of Health. For the latter we must pay $150 per semester (there are two semesters per year). Why not email me (chartreuse at ozemail dot com dot au) and I will send you more information about the two clinics, contact persons etc.

About me

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.