02 June 2011

Another round of therapy ends

Tuesday dawned bright and sunny up here on the Sunshine Coast, and we could happily have sat out in the late autumn sunshine for the rest of the day.

But just minutes after taking this photo, we were off to Brisbane for the last of 12 sessions in a semester-long Aphasia Clinic at the School of Health and Rehabilitation Sciences, University of Queensland. This is the third time that we've participated in this clinic – we did our first UQ clinic in 2009, not long after Allen's release from hospital, and we went again for one semester in 2010.
Each clinic group contains six or seven participants who have some form of aphasia – most of whom acquired the condition as a result of stroke. Almost all the participants come along with a family member (usually a spouse, but sometimes a son or daughter). Each week's session includes one hour of group therapy activities, and one hour of individual therapy. Here small groups of participants have to rearrange a series of pages, each of which contains text and a photo, into a logical sequence to make a story. This demonstrates clearly that aphasia therapy is about much more than just speech. The full spectrum of mental processes can be affected by the deterioration in areas of the brain that affects a person's ability to use language. Sequencing difficulties are just one of many other problems that people with aphasia may experience.

The UQ clinic program is conducted by Undergraduate Speech Pathology students working under the supervision of a Speech Pathologist from the teaching faculty. The moderate cost of $200 per clinic, or just over $8 per hour, is exceptional value for speech pathology sessions. And the group environment is particularly good for building confidence.

As well as developing and delivering Allen's individual therapy sessions, Dana and Caitlin, the two students assigned to us, administered standard speech pathology tests to Allen over the 12 weeks: the Boston Naming Test and two subtests of the Psycholinguistic Assessments of Language Processing in Aphasia (PALPA): subtests 47 (Spoken Word-Picture matching) and 48 (Written Word-Picture Matching).

Testing is worked into therapy sessions in a relaxed and friendly manner, so Allen's performance was not adversely affected by any anxiety about the process. Then at the final session, Dana and Caitlin presented us with a comprehensive 6-page report summarising Allen's test results, and comparing these to results from previous years. The report also documents his progress on therapy goals we had set for these sessions, and gives recommendations for future therapy.

Allen's poor score on naming simple objects (19/60) confirmed that he has severe word-finding difficulties. This result is down from 29/60 in 2009 and 39/60 in 2006, when he was first diagnosed (55 is considered an average score). However, when he doesn't have to name an object himself, but simply has to match a given word to a picture, or vice versa, he scores almost perfectly (37/40 and 39/40). This confirms that his comprehension of words is relatively intact – as we know from the fact that he is still an avid reader. (Currently he's re-reading Dickens and recently finished a couple of Bill Bryson's travel books.)

In past years, when we have presented a copy of the UQ report about Allen's progress to the gerontologist who treats him for aphasia, and who administers his own tests once a year, he has been very impressed with the quality of the UQ reports, and the depth of coverage. We, too, have been well pleased with all three of the UQ Aphasia Clinics we attended over three years. And I would certainly encourage anyone with aphasia to participate (the Speech Pathology Clinic webpage gives contact details – but remember to specify that you're interested in the Aphasia Clinic, which is not specifically listed on the website).

In spite of this, I think we may not be participating in further clinics. I tried to explain my reasons for this in an email to our student therapists, part of which read as follows:

I’m not sure how much Allen can profit from continued therapy that ‘challenges’ him. Whereas this used to have a good effect on him, when he was able to feel he could make progress, I’m afraid now he mainly gets frustrated by what he can’t do. His intelligence is not affected – so he knows how badly he’s performing on some therapy tasks. And sometimes this depresses him. I’m not saying this has happened too much this semester. But I have noticed a difference in his reaction to therapy.

I am inclined to think that it’s better for us to organise more social occasions – visits with friends, going out to see plays and such – than to take part in too much therapy. The truth is that Allen isn’t going to improve; he is only going to deteriorate – that’s the unfortunate nature of Primary Progressive Aphasia. But luckily, Allen is highly motivated and undertakes quite a lot of mental activity at home – he routinely works on his daily word-finding puzzle (seeing how many words he can make from a given set of 9 letters) and inevitably scoring very well) and on various other pen-and-pencil activities, plus he does lots of reading every day. So I think it’s best for him to continue that kind of activity – plus our two-times-monthly sessions with members of our own Sunshine Coast Aphasia Group – and perhaps undertake more physical activity, maybe even another round of physiotherapy.
I think a more relaxed lifestyle may be better for Allen than having to work on set tasks, or homework, that he tends to worry about finishing. And that’s why I’ve decided it’s best for us not to continue with clinics – especially since the distance we have to travel is quite a strain on both of us. It’s been a very good experience for both of us, but I think the time has come for us to be a bit more relaxed in how we deal with Allen’s aphasia.

God knows I’ve pushed Allen very hard for the past few years, and in many ways that has benefited him. But I think the time has come when we should go along at a more relaxed pace, and enjoy life without pressuring Allen too much to try and perform at a level that is difficult for him. Does that make sense to you? We’ve lived with this situation for quite a few years now, and I guess in some ways we are both rather tired of the hard work. So I guess I need a break as much as he does. Maybe by next year I’ll feel differently, but for now I think more time in the sun and less on the road is the way to go.

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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.