Blog 7: DIAGNOSIS – APHASIA
The month of August, 2007, was an important time for us because it was at that month’s follow-up visit to the hospital that we were given a diagnosis for Bill’s speech problems. Bill, the doctor told us, had a condition known as Aphasia (pronounced a-faz-yah). “Aphasia?” we said to each other. We had never heard the word and had not the slightest idea what the condition was all about. It was not until we got hold of a copy of Angela Berens’ and her co-authors’ book, The Australian Aphasia Guide, that we began to understand a little.
“Aphasia”, Berens writes, “is a language difficulty caused by injury to the brain. It may affect everyday communication, relationships and everyday living and the person who has Aphasia may find it hard to understand words, speak, read, spell, write, gesture and use numbers.” (Berens, A., Rose, T. and Howe, T., The Australia Aphasia Guide, Australian Aphasia Association Inc., 2006, p.12).
You would think that Bill and I would be devastated by such a diagnosis but we were actually elated to have a name for that condition which had plagued him for almost two years. We felt that, now we had a name, we could fight it. Berens, et al, gave us some hope that people with Aphasia could sometimes relearn that which had been lost and the good doctor booked us in to see the hospital’s speech therapist. If anyone could beat this thing, we believed, it would be team Bill and Fay.
We worked hard at that speech therapy for almost two years, often attending bi-weekly sessions at the hospital and then doing an hour of homework each day. I took photos of Bill’s tools, of fruit and vegetables, of clothing etc. and we practised saying their names and placing the written word under the matching picture. We worked on various work sheets with some degree of success.
Bill did well on any exercise that included an automatic element, e.g., a worksheet about “Pairs” ….. Adam and ______; black and _________; knife and _______; salt and ________.
Or the one about Proverbs ….. Too many cooks spoil the _____________;
A stitch in time saves __________; Don’t put all your eggs in one _____________.
But Bill found the effort of keeping a daily diary exhausting and his writing skills, by the end of 2007, were something like those of a six-year-old.
In th mrnin, he wrote in one entry, I rak th leevs and wip th tabel.
He was having similar difficulty naming the photos that I had taken of his tools etc. It was hard, hard work for him and what he could name this week, was forgotten the next. We struggled on and I think that the effort was worth it but, although we didn’t admit it to ourselves at the time, the evidence was there for us to see if we wanted to ….. this man, who had been awarded a Master of Education Degree in 1990, was fast becoming illiterate.
Fay
But was that diagnosis accurate? Did Bill suffer Aphasia for a couple of years and then fall into Dementia? Or is Aphasia itself a form of dementia and just part of the relentless, unstoppable downward slide that characterises the disease?
Sharon Hendy-Moman
I love this photo of Bill.
Fay
Taken around 1990, Sharon, when Bill was in his early 50s. It’s quite extraordinary. Bill’s looks didn’t change dramatically from then on until he was really ill. Fay
Suzi Carson
I think the Speech Therapy made a difference
And importantly I think it made it easier for awkward visitors, like myself, to begin conversations somewhere….I found it was a great way to ‘be’ with Bill….given that being with him was a little different to my way of being with him all my life to that point…..
And yes- I think it may not have been pure aphasia….but no doubt you have readers who have experienced a similar presentation in their loved ones, perhaps after, rather than before the diagnosis of ‘dementia’ was made……..
S
Fay
Hi, Suzi,
I think that the Speech Therapy in itself did not do anything to stem the continual and ongoing language losses that Bill experienced but I do think that it gave us props and strategies that helped Bill exist in the real world. People were sometimes astonished when, mid-conversation, he’d pull a photo album out of our bag, sit someone down with him and make them go through it with him. It usually happened when he felt himself being inadvertently cut out of the circle of conversation. You knew that he was crying out: “I’m here, I’m here, don’t ignore me!”
Sonia Hendy
On the occasions that Bill was able to communicate, it was such a joy to know he was “still there” and knew he had the love and respect of his friends and family.
Fay
It was that love and respect that sustained us through the whole journey, Sonia ….. and still sustains me now. Because of his inability to communicate, Bill often felt “shut out” I’m sure, but that wider feeling of love and respect, that was always there, helped him to bare that load.
Harold and Nola
We agree: it is so much easier to handle when you can put a ‘handle’ onto an illness. To have some sort of diagnosis does come as a relief. Although, as you question, was that first diagnosis the right one? To be treated for the wrong thing can well come against the sufferer – not to mention the carers.
Fay
And, in the end, Nola, the diagnosis gave us good reason to keep on fighting the disease. And that was a good thing. We didn’t know that Bill, at that stage, only had another four years to live. We thought he would go on until he was 90 and conducted our lives accordingly. Sometimes it is a good thing in life to be blinkered and naive. It was a good thing for us in August 2007.