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Life with dementia: A poet loses his words

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Award-winning poet David McFadden, who is losing his words due to dementia, and his partner, Merlin Homer Above, award-winning poet David McFadden, who is losing his words due to dementia, and his partner, Merlin Homer. (Photo: Stuart Ross

Earlier this year, David McFadden, one of Canada’s most prolific poets and author of over 35 books of poetry, fiction and travel writing, was awarded the Griffin Poetry Prize for his collection of poems entitled “What’s the Score?”

Accepting the award at a gala attended by a veritable who’s who of the literary world, McFadden, 73, appeared at a loss for words.
 
“I can’t talk, I’m sorry, but I can read,” he said as he referred to the notes he had prepared for the occasion.
It’s easy to attribute McFadden’s flustered state to being overwhelmed by this recognition. But what no one could have guessed was that McFadden was actually being literal.
 
He was at a loss for words and worried that he wouldn’t be able to remember the words needed for his speech on his own.
 
Last year, McFadden was diagnosed with logopenic variant primary progressive aphasia, a type of Alzheimer’s disease that affects a person’s memory of words.
 
McFadden was a writer who was losing the words he needed for his craft, but managed to write a complete book of award-winning poetry.
 
“I can write very well except for one thing: I’m much slower than I used to be,” he explained. “It’s very slow, I have to remember and think…if I’m using the word ‘no', n-o, I’m not sure if there should be a ‘k’ in front of it, that kind of thing, and I have to think about it, and think about it.”
 
Dementia's slow progression

McFadden’s cognitive impairments had progressed slowly over the last few years. It first manifested itself as confusion when it came to words, something that many people normally chalk up to the aging process.
 
He would stop mid sentence, unable to recall the word he needed. Sometimes he substituted a word and the sentence didn’t make much sense or was incorrect.
 
Eventually, however, his partner – Merlin Homer, a visual artist – noticed that McFadden often needed information to be repeated to him, that he was forgetting appointments, was misplacing or losing things and had difficulty concentrating.
In May 2012, McFadden was referred to Dr. Carmela Tartaglia, a neurologist at the Krembil Neuroscience Centre’s Memory Clinic who formally diagnosed his aphasia.
 
“By the time he came to see me, McFadden’s symptoms had moved from the language domain to include more classic memory problems,” said Tartaglia. “Not only was he having difficulty recalling people’s names and getting anxious when he couldn’t think of certain words – characteristic of his aphasia – but he was also struggling to plan things, stay organized and could no longer help in the management of the household.”
 
'Impression of being confused'
 
Patients with this type of aphasia often give the impression of being confused. Although they are perfectly capable of reading and writing, they have trouble with vocabulary recall, or thinking up words on the spot, which makes it difficult for them to follow and participate in conversation.
 
Early on, people with aphasia – especially those with extensive vocabularies – can compensate by word substitution. But as the illness progresses, it becomes more apparent as the sentences get shorter, sometimes down to "yes" or "no" answers only. They begin to seem more withdrawn and more extensive memory deficits become apparent such as increasing difficulty in recalling events or conversations.
 
In retrospect, Homer now recognizes that McFadden was struggling with dementia, but she was perplexed by his behaviour at the time.
 
“There were confusions between the two of us – I would ask him a question and get a very clear answer but the answer was the opposite of what he meant,” she said.
 
What's happening in the brain
 
Although McFadden’s story might seem quite tragic – a writer losing the memory of the very thing he most needs for his craft – it is not as sad as it seems.
 
McFadden can still write and continues to have new ideas for poems. In Alzheimer’s disease, the salience network, the part of the brain that focuses attention on things that stand out and where ideas are thought to originate, is unaffected unlike other networks such as the one associated with language.
 
So, although McFadden now sometimes writes two versions of the same poem because he forgets having written the first, the saliency of the object or event that triggered the idea for the poem is the same, because the aphasia does not affect the ‘idea part’ of the brain.
His neurologist is more than encouraged by his situation.
 
“What is great about McFadden is he is doing well. He is still a pretty independent person. His Alzheimer’s affects his memory of words, but not his creativity,” Tartaglia said. “It’s important for people with Alzheimer’s disease to continue to be engaged and find things to do. You can still accomplish great things when you have Alzheimer’s disease.”
And you can also try to do something about it.
 
Writing and exercise
 
McFadden is the first participant in a study led by Tartaglia that will look at the effects of aerobic exercise on people already affected by dementia. For six months, he will go to Toronto Western Hospital three times a week for a 40 minute session of aerobic exercise.
 
“There is a lot of scientific evidence showing that, when started in mid-life, exercise activity – especially aerobic exercise – can delay the onset of neurodegenerative disease and slow its progression when it starts,” said Tartaglia. “What’s not as well-known is the effect of aerobic exercise on a person already living with dementia which is what we will investigate with this research.”
 
Tartaglia and her team will build on the existing preliminary evidence from other research studies showing that aerobic exercise might change the course of Alzheimer’s disease, and be a more effective treatment than medication. In addition to helping lessen the effects of vascular disease, increase blood flow and increase blood vessels, there is some evidence that molecules released during aerobic activity may be beneficial for forming connections in the brain.
However, when working with patients that have Alzheimer’s disease, part of the challenge is getting them to commit to and remember the goal. Therefore, the research will also look at the barriers and obstacles that prevent these patients from exercising regularly and how to overcome them.
 
McFadden's new normal
 
On a recent visit to Toronto Western Hospital for his exercise session, McFadden said that his reasons for participating in the study were that he thought it would be a good idea and that he is happy to do so. But when asked what he hopes to gain from the experience, signs of his aphasia become apparent and he struggles to elaborate: “I’ve lost my mind now, lost my memory for a moment,” he said, and couldn’t finish his thought.
Homer, who sometimes accompanies McFadden to his sessions, stepped in to help with a suggestion.
 
“Are you hoping that your memory and words will improve?” she asked him.
“That’s exactly it,” he replied.
“I know that David’s inability with words has stopped him from going to events because a situation where he has to talk and explain himself is going to make his memory evaporate on the spot,” Homer added. “I am hoping that by participating in this research, he will become less symptomatic or at least that the progression of his disease will slow.”
 
It is a small but poignant display of how aphasia is affecting McFadden and how he, and Homer, are learning to live with it. But they haven’t let it become the focus of their lives.
 
'Amazing thing about David'
 
“The amazing thing about David is, that although he has ups and downs, he is a wonderful person to be in relationship with,” she said. “Some things he is brilliant at, his mind is very playful, he’s affectionate and intelligent in wonderful ways, but then he won’t know what month it is. That’s what I have to get used to.”
 
Since winning the Griffin Prize, McFadden has written several more books, one of which, Mother Died Last Summer, a travel memoir, was published this past April. Another book of haikus written over his lifetime is expected to be released next spring. He continues to do public readings of his work at various literary festivals. But most importantly, McFadden hasn’t let his aphasia change how he feels about life.
 
“I’m a happy guy,” he said. “That’s never changed.”
 

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