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Joanne Susi

"My life is separated into before and after. Before, I was a Senior Clinical Research Associate assisting in clinical trails with CAP working with Dana Farber, Tufts, Johns Hopkins, and others in Cancer research. Now I am a survivor and lucky to be alive". Read Kristin's story

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Joanne CogginsKaren Kelly and Family

"Everything she can do we're so grateful for.”

It was Oct. 13, 2008 when Karen Kelly received a call that would change her and her family’s lives forever. She was told that her mother, Joanne Coggins, who was visiting a friend in North Carolina, had a staph infection from dental work she had weeks earlier and was going to need surgery for acute bacterial endocarditis. Doctors needed to remove a growth on her heart which was caused by the acute bacterial endocarditis. During surgery, a piece of the growth detached and traveled to her brain, causing her to have a stroke.

Karen and her sisters rushed to North Carolina to be by their mother’s side. Because of the stroke, Joanne lost her abilities to speak (termed aphasia) and eat and had no strength to be able to walk. The right side of her body was also affected.

Because Joanne was being treated in a North Carolina hospital, staff expected her to receive care at a nursing home or acute rehabilitation center in the state, despite Karen’s wishes to take her home to Massachusetts. The judge granted Karen temporary guardianship of her mother, who was unable to communicate on her own behalf, so that she could be transported to Massachusetts for care.

Joanne received occupational, physical and speech therapy. She learned to swallow and eat again—both enormous accomplishments—and was able to regain enough strength to walk. Joanne now lives at home with a 24-hour caretaker. However, her aphasia continues to be a challenge.

“Everything she can do we’re so grateful for,” explains Karen. “Over time she has learned to compensate [speech] communication skills by learning different ways to communicate.”

Regardless, Joanne’s aphasia is a constant struggle. Joanne is aware of what is happening around her and knows what she wants to communicate, but is unable to find the words, which can be incredibly frustrating for her. “It really upsets her,” Karen says.

Despite the challenges she faces, Joanne remains determined to regain the skills she lost. She now receives speech therapy through a unique program with graduate students and is learning to form sentences—something she was unable to do for the first three-and-a-half years after her stroke. “She’s been able to communicate so much more,” Karen explains. “Her expressive language is so much better.”

Karen works with her mother on other skills, such as cooking, writing checks and verbal exercises even while they’re in the car driving to appointments. Joanne remains determined not to let her stroke get in the way of her goals. She’s even learned to kayak and ride a bike, so she can ride with her granddaughter to the park.
Joanne’s granddaughter, who is learning to read and write, inspires her because they can both learn together. “It motivated my mom to have someone to go through it with,” says Karen.

Although the family has a long journey ahead of them, Karen says they are hopeful. They want to see Joanne drive again, speak more fluently, be able to read out loud to her grandchildren and write on her own without having to copy the words.

“We don’t concentrate on the things she can’t do,” Karen says. “The more she learns the more independent she becomes.”

Although Karen says she knows they can’t change their circumstances, they want to change people’s lack of knowledge about brain injury. “I want people to know how important it is to know about brain injury,” Karen says. “One out of six people each year are affected by brain injury and if it’s not you, it’ll probably be someone you know.”

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