
Barb McCullough's stroke sometimes makes it hard to communicate with her grandchildren, Learah, sitting with her, and Graeme, standing in back, and her daughter Koreen. Barb holds a recent pencil drawing of her two daughters when they were young.; In 2002 Barb McCullough suffered a stroke due to an aneurysm - a weakening or bulging in the wall of a blood vessel - and now deals with a condition called aphasia. The stroke, which left Barb with limited use of her right hand, has meant dramatic changes in how she uses her hands. She is able to hold utensils in her right hand and cut with her left, and is being strongly encouraged to rekindle the use of her right hand and "challenge" it to improve.
It's amazing how things can change in the blink of an eye - or overnight. For Barb McCullough, in August 2002, it happened over dinner.
"I'll never forget that day," says husband Ken Snider.
Ken and Barb, of Fonthill, were up at their family's cottage on Buckhorn Lake in the Kawarthas.
After finishing 18 holes of golf, Ken remembers them going back to the cottage, making dinner, doing dishes, then sitting and talking across the table.
"I got up to go to the living room and heard a weird sound come out of Barb," he says. "The right side of her face dropped, her right arm dropped and she slouched down over the table."
Barb does not remember this.
Barb, 47 at the time, suffered a stroke due to an aneurysm - a weakening or bulging in the wall of a blood vessel - and now deals with a condition called aphasia. It's a disorder that results from damage to portions of the brain that are responsible for language.
In most cases, Barb's included, aphasia occurs suddenly and in the left side of the brain due to a stroke or head injury.
Although she is able to comprehend what's going on around her and generally knows what people are saying, she is unable to fully put into words what she would like to say or what she is thinking.
She has a few words which are the basis for how she communicates, and says them often with hopes they are being received and understood by the listener.
Based on facial expressions, hand gestures and tone, a single word or phrase can mean many different things. She struggles with saying names, places, and times.
The names she can say are often confused as she tries to pinpoint who she is referring to.
"I know she wants people to recognize she can still understand everything," daughter Aileen Hutson says. "It's just that she can't speak."
One can imagine that any sudden change in social ability, such as communication, would have an immediate impact on the affected person's psyche as well as that of the family. Barb says her frustration is she often feels she isn't being heard.
When people aren't understanding her, she feels they get up and leave the room, not really putting in the time, and not really caring about her or her progress. She feels excluded. Her family admits frustration as well. If something is misunderstood, they say Barb might throw her hands up in annoyance, or even just walk away. "We feel tired a lot of times," youngest daughter Koreen McCullough admits.
"Communication is certainly difficult."
Ken adds, "There's a lot of miscommunication here."
Before the stroke, communication was definitely not a problem. In fact, Barb was a successful businesswoman most of her adult life. For many years she was the controller at Peninsula Ready Mix in Beamsville, running the office. Her family describes her as driven, confident and strong. Koreen worked for her mom at Peninsula and laughs that she was definitely "a tough boss."
Away from the office she was known to be a good mom, had an active social life and became an accomplished painter. Many of her paintings are displayed in their home.
But the stroke, which left Barb with limited use of her right hand, has meant dramatic changes in how she uses her hands. She is able to hold utensils in her right hand and cut with her left, and is being strongly encouraged to rekindle the use of her right hand and "challenge" it to improve.
Since her stroke, Barb has had very little feeling in her right hand, until now. She has talked about her hand starting to hurt, which might be a good sign.
Koreen emphasizes to her mom, "If your hand is hurting only now, maybe it's waking up. Try using it."
The night of the stroke, Barb was rushed to Peterborough by ambulance and was immediately flown by helicopter to Toronto Western Hospital where she was put on blood thinners after an angiogram confirmed there was blood clotting in the artery.
She spent five weeks in Toronto and another five weeks at Chedoke in Hamilton, where she underwent communication, occupational and physical therapies.
It wasn't until more than a year later that she was physically strong enough to undergo a procedure called GDC coiling - in which doctors insert platinum coils into the affected blood vessel. These coils mesh together, allowing the blood to clot around them, creating a seal.
Over the following year, some of her more specific therapies included speech, involving communication partners, as well as communication through drawings at Shaver Hospital in St. Catharines. She has also continued to go to an aphasia group at Niagara Arms Retirement Home, where she can socialize and identify with people having some of the same struggles.
One of her recent joys has been a newfound ability to draw with her left hand. Aileen encouraged her mom to take a "sketching with pencil" course at Brock University, where she rediscovered her talent, only with her other hand.
"At first she didn't want to go, but I told her she had to," says Aileen. "She enjoyed it right away and I hope that experience will lead to more classes."
She did a wonderful self-portrait during the class, as well as many other sketches. On her own time, she added a little humour in a comic strip - detailing how a gardening mishap left her with a black eye.
The natural reaction for anyone in Barb's position might be to slowly pull away - avoiding social settings which may seem uncomfortable or where the person may feel on display. Barb has had a tendency to keep her right hand hidden in public, admitting it's been tough and that she wants results "now." Ken says the only thing that bothers him is that it bothers her.
"But I give her credit for going out of her way to immerse herself in people."
She certainly has done this, and so have others. The amazing support of extended family and friends seems to have made it nearly impossible for Barb to pull away, even if she wanted to.
Barb now feels confident to go to Tim Hortons and present the server with a hand-written order - a large green tea, black. As well, she carries a card around with her describing aphasia and containing her vital statistics - allergies, blood type and who to contact if she encounters a medical problem, car accident or anything requiring public help. It's also very useful if she's going somewhere and introducing herself to someone. Basically it says, "this is my condition. Please take time to communicate with me."
Two of Barb's grandchildren, Graeme and Learah, have had different experiences communicating with their "mima."
Graeme, who was eight when it happened and who, with mom Koreen, lives with Ken and Barb, has known her both before and after. But Learah, who was too young at the time of the stroke to remember her talking, does understand what happened to her. All three communicate well with each other.
What Graeme appreciates most about Barb is that she's a constant in his life.
"She's home all the time. I know she's always going to be there."
He's also come to recognize some of her trends.
"She's a busybody. She'll clean your room when she thinks there's something suspicious," he says half-jokingly.
In describing what her mom's been through mentally to get to this point, Koreen says, "she's come a long way, but it's taken awhile." And speaking directly to her mom she adds, "I'm proud of you."
It's evident they're all proud of her. The whole family has great hopes for Barb's continued progress.
Doctors warned their family that after a year and a half of having a stroke, "what you have is what you have." But they've also come to realize that isn't always true. In fact, one of the families in a communication therapy session shared with them that their own dad could not speak or communicate for seven years and then was able to. It's been almost five years now since her stroke. Barb has had two coiling procedures done, and a third aneurysm, which was too risky to be worked on at the time, is being monitored.
Lately, her family has noticed significant changes in her listening ability and comprehension. She loves to read and play online word games and dominoes.
Says Ken: "The brain is not hard-wired; it can change" - something they're holding onto.
He points out with a smile the last thing he remembers Barb saying is, "I'm gonna put this sucker right on the green."
She is very determined and someday that just may happen again.