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Saturday, May 22, 2010

Words to live by

Last updated at 12:31 AM on 22/05/10  
After a stroke at the age of just 44, Arnold O’Neill of Iris is steadily working toward regaining his ability to communicate with the world

The Guardian

A severe stroke in 
February 2009 set Arnold O’Neill of Iris, then 44, on a path to recovery
 that is continuing at a slow but steady pace as he works toward 
regaining his communication skills and more mobility. GUARDIAN PHOTO BY 
A severe stroke in February 2009 set Arnold O’Neill of Iris, then 44, on a path to recovery that is continuing at a slow but steady pace as he works toward regaining his communication skills and more mobility. GUARDIAN PHOTO BY MARY MACKAY

One by one, the words are slowly coming for Arnold O’Neill of Iris.
Since a stroke at the young age of 44 fewer than two years ago wiped his linguistic slate clean, he has been working diligently to regain what he has lost verbally and also physically.
But no words he has said so far have sounded sweeter to his ears than the day he was able to say the names of his wife, Betty, and their two sons, Logan, 11, and eight-year-old Owen.
“Yes. Oh yes,” Arnold says, beaming with the memory of that momentous day which was earlier on in his long journey back to being able to communicate with the world.
Things changed dramatically for Arnold one day in February of 2009. He wasn’t feeling very well and his right arm seemed rather heavy, so after some hesitation he agreed to go to the Kings County Memorial Hospital. Medical staff there thought he had experienced a mini-stroke.
He had another mini-stroke at the Queen Elizabeth Hospital (QEH) in Charlottetown the next day.
“We were all amazed because he didn’t have any of the risk factors at all,” Betty says. 
“He doesn’t have high cholesterol. He doesn’t have high blood pressure. He was always active. No smoking. No drinking.”
Then Arnold was hit with a massive stroke that severely affected his motor skills on the right side of his body and the language centre of his brain.
“And all he could say was ‘yes’ and ‘no.’ He couldn’t feed himself,” Betty says.
“(Or) walk,” adds Arnold.
Despite this terrible blow, Arnold was determined to work his way back to as close as he could to his pre-stroke self.
Physiotherapy was essential for the physical side and speech therapy for his communication skills, both of which he pored his heart and soul into.
He was diagnosed with speech apraxia, a communication disorder that can affect stroke patients in which a person has trouble saying what he or she wants to say correctly and consistently.
Although Arnold’s auditory and reading comprehension was quite strong, speaking and writing skills were pretty much nonexistent initially after the stroke.
“Usually about 40 per cent of the stroke patients will have some definable speech difficulty . . . ,” says Rick Burger, speech language pathologist in the department of physical medicine at the QEH, who worked with Arnold pretty much from the start.
“In (Arnold’s) case, because he had speech apraxia, there would be a lot of struggle behaviour. Generally these folks know what they want to say and generally their comprehension is quite good . . . . So that struggle created the frustration and as good natured as he is it was still an immense frustration for him.”
Arnold started with about two hours of speech therapy five days a week. He also diligently repeated audiotape lessons in the evenings.
“Most of the strategies are what we call partner-assisted in the early stages where we provide 70 or 80 per cent of the support in terms of setting up the materials that he can recognize and deal with and then he can answer. In his case, probably by pointing in the first months,” Burger says, citing the example of a board with written words on it that allowed Arnold to make some communication choice options.
“As therapy went along the issue was to get him so he could initiate and control his own communication, which would involve primarily the speech and the writing which were both worked on extensively. With time and with using a multitude of strategies he’s getting his message across.”
For Arnold, pushing past that invisible zone that blocks the easy passage of words from his mind to his mouth is a challenge, to say the least. Imagine trying to have a typical conversation with just one- or two-word responses or questions in your repertoire at a time.
“We don’t realize it until we consider all the times minute-by-minute that we communicate in one fashion or another, whether it’s nonverbal or verbal. We’re doing it all the time,” Burger says.
“And many people with strokes actually lose all the communication system. You might think someone who can’t speak can gesture (to signal what he or she wants) but all the language systems (can be) affected by the stroke (making even gesturing impossible).”
Being married for 24 years gives Betty an advantage when it comes to figuring out what is on her husband Arnold’s mind.
“But sometimes it’s a guessing game. He’s trying to tell you something so you keep going until you get the right answer,” she says.
“(It’s) hard,” Arnold says.
“Awww (yes),” he adds, shaking his head in affirmation.
Equally difficult was his working situation. 
A longtime lobster fisherman,  Arnold was unable to even think about fishing in the 2009 season. Fortunately, the community banded together to make sure that was not a worry for him and his family.
“Last year 10 fishermen each took 30 traps to fish for us,” Betty says.
“It was good,” Arnold says, who returned home full time in May 2009.
As time passed, the O’Neills knew it would not be possible for Arnold to fish anymore so they made the difficult decision to sell his lobster license and gear.
“That was probably the best idea,” Betty says.
The community also had a big benefit in 2009 that raised more than $18,000 for the family.
“We’ve had to depend more on people. You’re used to doing things yourself, but now sometimes you have to get help (to get things done),” Betty says.
Arnold is getting things done on a more mobile level now. He still has limited movement of his right arm and no use of his right hand, so he is learning how to use his left hand for eating and other tasks. A brace in his right shoe helps stabilize his leg for walking which he does now at a slow but steady pace.
“He walks with a cane, but he can walk, which is good,” smiles Betty.
Each day he runs through at least another hour of speech therapy exercises at home to increase his vocabulary and the ease of which he can recognize and say words.
“(Arnold) is also a little bit unique in that he has stayed on as an outpatient (at the QEH) for more than a year now. That’s quite unusual. We’re not able to do much outpatient therapy. The next phase of the (P.E.I. Integrated) Stroke Strategy is to put in place outpatient therapy, but that’s still the next phase,” Burger says.
“When we have some patients that are particularly (in need) and have good prognostic signs then we will continue on and try to support them when we know they’re changing . . . .
“Most stroke cases usually plateau, and then once they plateau there’s not much else we can do. We can help with maintaining what they’ve got but Arnold was continuing to improve.”
Lately at the QEH Arnold has been working on practical conversational scripts in various social environments, such as ordering a meal at a fast food restaurant.
“Relearning is very (repetitive) in apraxia. It just has to be done over and over again . . . because all the (communication) pathways have been disturbed. All the tracks have to be laid down again and so it has to be done with repetition,” Burger says.
“And so it can be quite boring therapy, but Arnold has risen to the occasion quite well by being willing to do things over and over again until he gets it.”
And no matter how long it takes, Arnold is confident he will succeed in his efforts to one day talk and move with ease.
“Yes,” he says, his eyes brightening and his smile broadening. “Oh yes.”
At a glance
May is Speech and Hearing Awareness Month, the one month in the year when thousands of professionals involved with the treatment of speech, language and hearing disorders come together to participate in a public awareness campaign that encourages early detection and prevention of communication disorders and seeks to increase the public’s sensitivity to the challenges faced by individuals experiencing them.
Speaking, understanding and hearing are essential skills in our society. One out of 10 Canadians suffers from a speech or hearing disorder. These people encounter many educational, social, psychological, emotional and vocational issues.
Common types of adult communication disorders include: aphasia (pronounced AH-FAY-SIA), a language disorder due to brain damage or disease resulting in difficulty in formulating, expressing and/or understanding language; apraxia (pronounced A-PRAX-SIA), a speech programming disorder which makes words and sentences sound jumbled or meaningless; dysarthria (pronounced DIS-AR-THREE-AH), a group of speech disorders resulting from paralysis, weakness or lack of co-ordination of the muscles required for speech; dysphagia (pronounced DIS-FAY-JAH), swallowing disorders that are common with all of the above and are treated by speech language pathologists.
Source: The Canadian Association of Speech Language Pathologists and Audiologists.
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