Stroke of Hope creates aphasia program
By Sarah Stover
Staff writer
NORTH PALM BEACH - A local organization that helps stroke "victors," recently extended its services to include a program that helps those affected with aphasia.
While many are familiar with strokes, or brain attacks, they are less likely to know about aphasia, a communication disorder that can occur after a stroke.
The disorder impairs a person's ability to process language, such as finding the right words or understanding conversations.
Although stroke is the most common cause of aphasia, it can also occur after head injuries, from brain tumors or other neurological issues. The lack of awareness has caused issues for people with the disorder and their caregivers, since there is little help available to them.
Approximately 1 million Americans or one in 250 people have aphasia, and more than 100,000 are diagnosed with the disorder each year, according to information from the National Aphasia Association.
"As time has gone by, Liz Blake (executive director of Stroke of Hope) has realized there's no help for people with aphasia," said Penny Goree, an administrative assistant for Stroke of Hope.
Staff from the North Palm Beach-based nonprofit, which has been in existence since 1984, spoke with the Mike and Elaine Adler who founded the Adler Aphasia Center in Maywood, N.J., when they decided to create a program for "victors" with aphasia.
The center is the only one in the U.S., and a group of the staff or volunteers from Stroke of Hope will visit the Adler's this summer to learn more, said Mrs. Goree.
Stroke of Hope started an aphasia program in June and currently has 10 members. Speech pathologist Cathy Feld works with members either one-on-one or one-on-two, if they have similar deficits. They also work on writing, computers and arithmetic.
The program is held Tuesday through Friday from 12:30 p.m. to 2 p.m., and the organization is looking at expanding it another two hours. Members are welcome to come early, said Mrs. Goree.
The program has worked wonders for its members.
"One couple, the wife had a stroke and could not speak. She had not said a word, but then they came to us and within three weeks she spoke," said Mrs. Goree, who also knows the program's effects firsthand.
Her husband, Tim, had a stroke in 2000 and was diagnosed with aphasia shortly afterwards. The couple had a hard time finding help, and even worse, discovered his rehabilitation was not covered by insurance, at least not completely.
"It was in small print in our insurance contracts that we didn't get rehabilitation for strokes or aphasia and if we did, it was only short-term, but this is a long-term thing," said Mrs. Goree.
Mr. Goree was 50 when he had his stroke, and his aphasia diagnosis cut his career as a salesman short.
"Can you imagine a salesman not being able to talk?" joked Mrs. Goree.
Since he could not work, they were going to apply for disability benefits, but that was problematic.
"If you're under 60 and have a stroke, Medicare won't pick you up until you've been disabled two years and you have to be disabled for six months before you can apply. Tim had to go two years without insurance," she said.
"When I tell people they're just dumbfounded. Tim's also a Veteran, and that's what saved us, but they couldn't do rehab either."
Stroke of Hope was a blessing to the couple, they said.
Not only does the organization help the stroke victors, it also serves the caregivers. Its' aphasia program requires members, caregivers and families to take a 12-hour course, which educates them and assesses each member's needs. Anyone in the community is welcome to take the course, said Mrs. Goree.
"We make sure one of their caregivers takes our six-week course (because there is a lack of education about aphasia),"she said.
"One woman came in whose husband had a stroke 17 years ago, and she never knew he had aphasia (until then) because the doctors don't explain it to patients a lot of the time."
Although she knew Mr. Goree had aphasia and what it was, it was still difficult for her to adapt.
Her husband did not speak or drive for the first two years following his stroke.
"He was so excited when he drove for the first time again, and then kind of came home with his tail between his legs because once he got where he was going, he couldn't communicate," said Mrs. Goree.
However, he understands conversations and can read.
"His breakdown is when you ask him a question," she said.
Although Mr. Goree has a laid-back personality and can easily let it go when he is searching for the right word, other people with aphasia cannot. The couple has had to learn to communicate through body language and other ways.
"With aphasia, you have to spend time with them to understand what they're trying to say," said Mrs. Goree.
One of the signs of aphasia is saying the opposite of what is meant.
"Tim says yes when he means no, and no when he means yes, but it's gotten better (since we've been in the program)," said Mrs. Goree.
"It was very frustrating," said Mr. Goree, who said the program's very good and added an A-OK sign with his hand, just in case he was not understood.
"It never goes back to the way it used to be. You have to find a new normal. It took us five years to find ours," said Mrs. Goree.
Mary Ann and Ron Szynanski also had a difficult time getting the right help after Mr. Szynanski had a stroke two years ago.
The 55-year-old West Palm Beach resident had other complications at the time, because he was on chemotherapy for cancer and was in a nursing home, said Mrs. Szynanski.
She was not able to care for her husband at the time. He returned home from a stint in a nursing home last April. Shortly afterward, they learned about Stroke of Hope and later about its' program, which has helped them tremendously.
"I wanted to find something that would be beneficial, not just a day- care type of place," said Mrs. Szynanski.
"Before he would say a few things here and there, but he'll talk in phrases now. Every now and then, he'll come out with a phrase that makes perfect sense," she said.
"His stroke was very, very severe, so for Ron to say three to four words in a row is a miracle."
They started participating in October and it did not take long to see an improvement.
"The social aspect is very good for him, even though he's the baby there. He enjoys it. I think his brain is stimulated (from it) because on those days, he'll say more when he comes home," said Mrs. Szynanski.
Another West Palm Beach couple has benefited from the program as well.
Judy Mahaffey learned about Stroke of Hope from a friend of Ms. Blake's shortly after her husband, Bob, had a stroke almost 14 years ago. They have been going to Stroke of Hope since then and when the agency started the aphasia program, she signed him up immediately.
"It's really made a big difference. He was very depressed. He has a sharp mind, but he just has a hard time speaking," said Mrs. Mahaffey.
Bob, who will be 76 in April, now does crosswords and can work on the computer, she said.
"He's doing things I don't think the doctors thought he could ever do. They basically talked like his life was over. They kind of write you off, but there is life after stroke," said Mrs. Mahaffey.
Although the couple owned a print shop and had to close it after his stroke, Mr. Mahaffey uses a previous profession - teaching - to help others in the program, she said.
While the program has been helpful, the couple faced similar issues with the insurance companies to those of the Gorees.
"They allow only so much for stroke recovery and speech rehabilitation. They allowed $1,500 and if he showed improvement, they'd continue, but after two or three years they wouldn't cover him anymore," said Mrs. Mahaffey.
Although it's difficult to afford the aggressive therapy that is needed after a stroke or diagnosis of aphasia, another benefit of Stroke of Hope's program is that it's affordable, said Mrs. Goree.
It's only $30 a week for four days a week, she said.
Stroke of Hope wants to expand its center, but needs to start working on funding.
"We just need someone to hand us a big building or big bucks," she said.
In the mean time, the organization also recently started a program called Rehab Buddies at St. Mary's Medical Center in West Palm Beach. Staff, volunteers and members go once a week to visit people rehabilitating from strokes to cheer them on and talk to their caregivers, said Mrs. Goree.
For more information on Stroke of Hope call (561) 745-0400 or visit www.strokeofhope.org. For more information on Aphasia, call the National Aphasia Association at (800) 922-4622 or visit www.aphasia.org.