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Sen. Kirk's recovery will be uniquely personal, stroke survivors say
People who've been there talk about the long journey that lies ahead of anyone with a serious brain injury
For every survivor of a serious stroke, recovery takes a unique path.
Some fight through rehabilitation to return to their old jobs. Others get back to work, though to a less challenging job. For some, the journey never leads back to the workplace.
When Sen. Mark Kirk suffered a stroke last weekend, people across the country — hundreds of thousands, according to statistics — could identify with the struggles that may lie ahead of him.
Strokes come with little warning, hitting people of all ages and races, those who are fit and those who are not. While some remain relatively unaltered, others lose their ability to move and think clearly.
"It's difficult to predict," said Dr. James Sliwa, chief medical officer of the Rehabilitation Institute of Chicago. "Some people get tremendous recovery back and move on. Some people have more deficits. The process of recovery and rehabilitation goes on for months."
Doctors have given Kirk, 52, a relatively encouraging prognosis, even as he has undergone multiple surgeries to minimize damage from brain swelling that followed the stroke. Doctors say they expect the senator to regain his mental faculties, but he could suffer some lasting paralysis on the left side of his body.
His recovery, they say, likely will be a long one.
The stories of some who have had strokes and other serious brain illnesses show the many paths recovery can take.
SEN. TIM JOHNSON
There's one man in the U.S. Senate who can identify directly with the challenges confronting Sen. Mark Kirk, of Illinois.
Sen. Tim Johnson, of South Dakota, was close to death after suffering a rare brain illness five years ago. He was in a coma when his 60th birthday came and went. He endured about nine months of therapy and treatment before he was able to return to the Senate.
Johnson is noticeably, and admittedly, not the man he was.
He speaks haltingly. He wears loafers because he can't tie his shoes. He asks his wife or an aide for help tying his tie — or goes without one.
He takes an anti-depressant. He drives a specially adapted SUV and uses a motorized scooter to get around Capitol Hill. He can't write with his once-dominant right hand, so he scrawls with his left.
But Johnson, 65, a Democrat, made his way back to the Senate, won a third term in 2008, and now is chairman of the Senate Banking Committee.
Left partially paralyzed on his right side, Johnson had to relearn basic activities such as talking and climbing stairs.
"I learned to walk, or limp, all over again," he said.
During Johnson's re-election campaign in 2008, his GOP challenger tried to make an issue of his refusal to take part in debates. Johnson prevailed with 62 percent of the vote.
"I appreciate the people of South Dakota being patient with me," he said in an interview last week.
He's unsure about a fourth term, however.
His advice for Kirk: Listen to your doctors and therapists, but don't believe it when they say within six months or a year, you'll be healed.
"I kept healing for years," Johnson said. "You occasionally plateau, but it's never over."
Johnson noted that "no two brain injuries are the same," and that he was encouraged by a report that Kirk had asked for his BlackBerry.
"I thought, 'Good for you.' It's cognition. He'll have the same brainpower that he always had," said Johnson, who got to know Kirk because they sit on the banking and appropriations committees.
On Thursday, Johnson and his aides delivered lunch to Kirk's staffers in Washington.
What are other senators saying?
"Everybody feels, 'Best wishes for Mark,' both Republicans and Democrats, because we all have the feeling, 'There but for the grace of God go I,'" Johnson said.
Johnson had one more bit of advice for Kirk: "Never give up."
kskiba@tribune.com
MARTA SZWAYA
Before suffering a hemorrhagic stroke that paralyzed part of the left side of her body, Marta Szwaya was a workaholic who easily put in 100 hours a week, she said.
As a vice president of showrooms and stores at furniture company Baker Knapp and Tubbs, she was boarding a plane almost every day and came to rely on sleeping on red-eye flights.
"I never had time for rest before. I worked too much. I didn't take care of myself. I knew I had high blood pressure, but I didn't have the time to be sick," she said.
Until that day in November 2009 when she collapsed in a restroom at O'Hare International Airport. At that moment, her life changed and forced her to slow down.
When Szwaya, now 57, woke from a coma at Resurrection Medical Center, she was determined to recover from her health crisis.
She slowly relearned how to walk, using a cane and practicing maneuvering her paralyzed left leg. She spent weeks using a treadmill to regain her strength.
She learned how to dress using one hand, she said, and she reorganized her wardrobe with staples that are easier to get into — such as sports bras that have no clasps or buttons.
"Recovery is all about problem-solving," she said.
Five months after she collapsed, she returned to work.
Szwaya left behind her high-profile position and settled into the new role of social media coordinator. She works from her desk in Chicago without traveling. She concentrates on using her best skill, communicating, to help her company, she said.
Still, each day is a challenge, as she gets accustomed to moving at a slower pace and tackling everyday tasks, such as doing housework.
At first it was difficult to step into her same comfy office with a different pace and mission.
"I had to reimagine who I was," she said. "It was hard for me to accept help. It was hard for me to see myself as weak. The people I work with were used to seeing me one way.
"Instead of feeling bad for myself, I just explain: 'I can't do that yet. But wait a while, I'll get there.'"
One of Szwaya's challenges on her first day back at work was opening the restroom door, she said. The door seemed so heavy that she stood there for a moment, staring at it.
She slowly walked back to her office and asked a secretary to come open it for her.
"People are so nice. People are lovely," she said. "Before you knew it, I was doing it for myself."
lbowean@tribune.com
WALTER REID
There are times when Walter Reid is speaking and his voice gets a bit raspy and his throat feels dry. Throughout the day, the left side of his face tingles and he feels stinging sensations in his right arm and leg.
But in the three years since Reid suffered a stroke at his South Side home, he has learned to walk again, learned to speak again and has returned to his job as the chief of investigations in the inspector general's office for the Illinois secretary of state. He is driving, carrying the same workload and living almost as active a life as he did before he fell sick, he said.
"I'm totally blessed," said the 59-year-old Chatham resident. "I try to eat healthy. I think positive. Every day I wake up and thank the Lord for letting me wake up. I know he's got a purpose for me."
Reid remembers vividly the January 2009 day when he suffered a stroke, he said. He was preparing to do laundry when he was struck with a debilitating headache. The room started spinning and he could hardly stand on his feet.
"I called for my wife and I said, 'Dear, I think I'm having a stroke. Call 911,'" he recalled.
When his wife and two young children visited Reid in the hospital, he resolved to work as hard as he could to recover.
"I want to be around to see them get married," he said. "At first I asked myself, 'Why me?' Then I thought, 'Why not me?' There's a reason I survived. Maybe I can inspire someone else."
Reid was hospitalized for five weeks and then started intense rehabilitation: half-day sessions three days a week with therapists. They worked on getting him walking again and had him perform exercises to restore the feeling in his paralyzed limbs.
"It was difficult to cope with because I lost my independence. I couldn't button my shirts. I could not shave myself. I felt demoralized, frustrated and angry," he said. "But my source of inspiration was my spirituality, my family and the medical professionals at the hospital" and rehabilitation center.
At home, he spent hours on his stationary bike and lifted weights. He drilled himself mentally, trying to remember who was in his graduating high school class or high school track team, he said.
It took eight months before he felt ready to return to work. Even that step was a form of therapy, he said. Since returning to his job in September 2009, Reid said, he hasn't missed a day of work because of the effects of his stroke. His recovery has been so successful that as he walks around his Willowbrook office, it would be difficult to recognize any signs of his past ailment.
"My motto is to keep moving," he said. "It means more than just physically moving. It means moving spiritually, mentally, emotionally. I do mental gymnastics to keep my mind sharp. I do a lot of walking. Every day I'm moving."
lbowean@tribune.com
FRANK WATSON
Sometimes strangers ask Frank Watson about his limp or note the stiffness of his right arm.
Watson, the former Republican leader of the Illinois Senate, often gives a vague response.
"I just say, 'It's an old injury,'" Watson said. "Because that's what it was."
In late 2008, Watson was campaigning when he began slurring his words and lost movement in his right arm and leg. Doctors later discovered that a clot had caused him to have a stroke in his brainstem.
Simple comprehension tasks suddenly were insurmountable. Watson, now 66, was unable to read a short passage of text and remember the details, and he had problems organizing colors. Due to right-side paralysis, he couldn't walk or write.
Watson, a skilled orator and legislator, said he felt uncertain and depressed.
Still, he was re-elected to the Senate the following month. Although he relinquished his leadership position, Watson returned to his job in February 2009 believing that he could regain his abilities in several months. His rehabilitation was more difficult than he anticipated, however, so he decided to devote himself completely to recovery and resigned later that month.
"I just thought I wouldn't be able to do the job justice," Watson said.
Rehabilitation became Watson's fixation. He spent hours a day strengthening his mind, trying to recall as many animals as he could think of in a zoo, as many tools as he could think of in a toolbox, working crosswords and anagrams and reading his favorite authors. He stood in front of a mirror, reciting the alphabet and rehearsing tongue-twisting phrases. He also plodded through physical exercises, turning a crank using his right arm and lying on the floor to do leg lifts.
Watson moved from a wheelchair to a walker to a cane and eventually could walk unassisted.
But he still vividly recalls the first time he encountered an escalator while shopping with his wife.
"I couldn't take the step, a simple thing like that," Watson said. "It was just my balance, the steps are moving and I'm standing still, and I just didn't have the confidence."
Regaining a belief in himself has been a crucial part of Watson's recovery. Over the years, Watson has relearned how to write and has switched from Velcro to shoelaces. Although he still hesitates on escalators, avoids carrying liquids in a glass and has muscle spasms in his right leg, Watson said he hopes he will continue to improve.
He reads avidly, uses his relaxing time to do muscle exercises and has been trying to strengthen his motor skills — even when it means putting himself in frustrating situations.
On Thursday, Watson said he and his son-in-law went golfing, a sport that Watson used to love.
"Now it's like army golf: I hit the ball, and it goes right. I hit the ball, and it goes left," Watson said. "But I'm out there enjoying life, and that is a big part of it."
EDWARD MOGUL
Edward Mogul can deconstruct biblical Hebrew and detail Plato's dialogues and the Illinois criminal code with ease.
But basic tasks, such as tying shoelaces, cutting food and driving, remain beyond his reach.
In April 2011, a blood clot lodged in the left side of Mogul's brain, paralyzing the right side of his body and weakening the robust voice he had used for decades in Chicago courts as a trial lawyer and in classrooms as a teacher.
"I didn't feel pain, but I was helpless," said Mogul, 66. "And for a man of my age, who's never been helpless before, I didn't like it."
So Mogul focused on mastering the minuscule — willing his fingers to wiggle, trying to shift his ankle. He spent hours sweating on a treadmill, wearing a harness strung from the ceiling, and pedaling a recumbent bike. After months of therapy, Mogul could walk using a cane.
He had bars installed in his bathroom at home and got used to wearing elastic shoelaces and going without a tie. He hired his father's former caregiver to give him daily help administering medicines and driving around town. And he became familiar with the CTA bus system.
His first attempt at public transportation proved particularly challenging. After he slowly walked to a bus stop one morning and struggled aboard the bus, an older woman stood up and gave Mogul her seat, which he took gratefully.
"It encapsulated how my position had changed a bit," said Mogul, chuckling.
Although doctors advised him to lighten his workload, Mogul said he still took a case fewer than two months after the stroke.
"Because my body failed me, I wanted to prove to myself, I think, that my mind was just as strong," Mogul said.
Mogul won the case, but the physical strain led him to scale back and focus on rehab. He took the summer off, dropped his teaching load to one class a semester and avoided going to court when possible.
Mogul still spends hours a week on his physical rehab and hopes to drive soon.
He said that in some ways the stroke has taught him about himself, what is important in life and what he is capable of withstanding.
Last week, Mogul stood in front of students at Wright College, steadying himself against the lectern with his left hand, and asked them to think about similar questions as they progressed through Plato's writings and their own lives.
"Does my life have any meaning?" Mogul instructed the students to ask themselves. "Does my life have a purpose? Who am I?"
kskiba@tribune.com
cdizikes@tribune.com
lbowean@tribune.com
Some fight through rehabilitation to return to their old jobs. Others get back to work, though to a less challenging job. For some, the journey never leads back to the workplace.
When Sen. Mark Kirk suffered a stroke last weekend, people across the country — hundreds of thousands, according to statistics — could identify with the struggles that may lie ahead of him.
Strokes come with little warning, hitting people of all ages and races, those who are fit and those who are not. While some remain relatively unaltered, others lose their ability to move and think clearly.
"It's difficult to predict," said Dr. James Sliwa, chief medical officer of the Rehabilitation Institute of Chicago. "Some people get tremendous recovery back and move on. Some people have more deficits. The process of recovery and rehabilitation goes on for months."
Doctors have given Kirk, 52, a relatively encouraging prognosis, even as he has undergone multiple surgeries to minimize damage from brain swelling that followed the stroke. Doctors say they expect the senator to regain his mental faculties, but he could suffer some lasting paralysis on the left side of his body.
His recovery, they say, likely will be a long one.
The stories of some who have had strokes and other serious brain illnesses show the many paths recovery can take.
SEN. TIM JOHNSON
There's one man in the U.S. Senate who can identify directly with the challenges confronting Sen. Mark Kirk, of Illinois.
Sen. Tim Johnson, of South Dakota, was close to death after suffering a rare brain illness five years ago. He was in a coma when his 60th birthday came and went. He endured about nine months of therapy and treatment before he was able to return to the Senate.
Johnson is noticeably, and admittedly, not the man he was.
He speaks haltingly. He wears loafers because he can't tie his shoes. He asks his wife or an aide for help tying his tie — or goes without one.
He takes an anti-depressant. He drives a specially adapted SUV and uses a motorized scooter to get around Capitol Hill. He can't write with his once-dominant right hand, so he scrawls with his left.
But Johnson, 65, a Democrat, made his way back to the Senate, won a third term in 2008, and now is chairman of the Senate Banking Committee.
Left partially paralyzed on his right side, Johnson had to relearn basic activities such as talking and climbing stairs.
"I learned to walk, or limp, all over again," he said.
During Johnson's re-election campaign in 2008, his GOP challenger tried to make an issue of his refusal to take part in debates. Johnson prevailed with 62 percent of the vote.
"I appreciate the people of South Dakota being patient with me," he said in an interview last week.
He's unsure about a fourth term, however.
His advice for Kirk: Listen to your doctors and therapists, but don't believe it when they say within six months or a year, you'll be healed.
"I kept healing for years," Johnson said. "You occasionally plateau, but it's never over."
Johnson noted that "no two brain injuries are the same," and that he was encouraged by a report that Kirk had asked for his BlackBerry.
"I thought, 'Good for you.' It's cognition. He'll have the same brainpower that he always had," said Johnson, who got to know Kirk because they sit on the banking and appropriations committees.
On Thursday, Johnson and his aides delivered lunch to Kirk's staffers in Washington.
What are other senators saying?
"Everybody feels, 'Best wishes for Mark,' both Republicans and Democrats, because we all have the feeling, 'There but for the grace of God go I,'" Johnson said.
Johnson had one more bit of advice for Kirk: "Never give up."
kskiba@tribune.com
MARTA SZWAYA
Before suffering a hemorrhagic stroke that paralyzed part of the left side of her body, Marta Szwaya was a workaholic who easily put in 100 hours a week, she said.
As a vice president of showrooms and stores at furniture company Baker Knapp and Tubbs, she was boarding a plane almost every day and came to rely on sleeping on red-eye flights.
"I never had time for rest before. I worked too much. I didn't take care of myself. I knew I had high blood pressure, but I didn't have the time to be sick," she said.
Until that day in November 2009 when she collapsed in a restroom at O'Hare International Airport. At that moment, her life changed and forced her to slow down.
When Szwaya, now 57, woke from a coma at Resurrection Medical Center, she was determined to recover from her health crisis.
She slowly relearned how to walk, using a cane and practicing maneuvering her paralyzed left leg. She spent weeks using a treadmill to regain her strength.
She learned how to dress using one hand, she said, and she reorganized her wardrobe with staples that are easier to get into — such as sports bras that have no clasps or buttons.
"Recovery is all about problem-solving," she said.
Five months after she collapsed, she returned to work.
Szwaya left behind her high-profile position and settled into the new role of social media coordinator. She works from her desk in Chicago without traveling. She concentrates on using her best skill, communicating, to help her company, she said.
Still, each day is a challenge, as she gets accustomed to moving at a slower pace and tackling everyday tasks, such as doing housework.
At first it was difficult to step into her same comfy office with a different pace and mission.
"I had to reimagine who I was," she said. "It was hard for me to accept help. It was hard for me to see myself as weak. The people I work with were used to seeing me one way.
"Instead of feeling bad for myself, I just explain: 'I can't do that yet. But wait a while, I'll get there.'"
One of Szwaya's challenges on her first day back at work was opening the restroom door, she said. The door seemed so heavy that she stood there for a moment, staring at it.
She slowly walked back to her office and asked a secretary to come open it for her.
"People are so nice. People are lovely," she said. "Before you knew it, I was doing it for myself."
lbowean@tribune.com
WALTER REID
There are times when Walter Reid is speaking and his voice gets a bit raspy and his throat feels dry. Throughout the day, the left side of his face tingles and he feels stinging sensations in his right arm and leg.
But in the three years since Reid suffered a stroke at his South Side home, he has learned to walk again, learned to speak again and has returned to his job as the chief of investigations in the inspector general's office for the Illinois secretary of state. He is driving, carrying the same workload and living almost as active a life as he did before he fell sick, he said.
"I'm totally blessed," said the 59-year-old Chatham resident. "I try to eat healthy. I think positive. Every day I wake up and thank the Lord for letting me wake up. I know he's got a purpose for me."
Reid remembers vividly the January 2009 day when he suffered a stroke, he said. He was preparing to do laundry when he was struck with a debilitating headache. The room started spinning and he could hardly stand on his feet.
"I called for my wife and I said, 'Dear, I think I'm having a stroke. Call 911,'" he recalled.
When his wife and two young children visited Reid in the hospital, he resolved to work as hard as he could to recover.
"I want to be around to see them get married," he said. "At first I asked myself, 'Why me?' Then I thought, 'Why not me?' There's a reason I survived. Maybe I can inspire someone else."
Reid was hospitalized for five weeks and then started intense rehabilitation: half-day sessions three days a week with therapists. They worked on getting him walking again and had him perform exercises to restore the feeling in his paralyzed limbs.
"It was difficult to cope with because I lost my independence. I couldn't button my shirts. I could not shave myself. I felt demoralized, frustrated and angry," he said. "But my source of inspiration was my spirituality, my family and the medical professionals at the hospital" and rehabilitation center.
At home, he spent hours on his stationary bike and lifted weights. He drilled himself mentally, trying to remember who was in his graduating high school class or high school track team, he said.
It took eight months before he felt ready to return to work. Even that step was a form of therapy, he said. Since returning to his job in September 2009, Reid said, he hasn't missed a day of work because of the effects of his stroke. His recovery has been so successful that as he walks around his Willowbrook office, it would be difficult to recognize any signs of his past ailment.
"My motto is to keep moving," he said. "It means more than just physically moving. It means moving spiritually, mentally, emotionally. I do mental gymnastics to keep my mind sharp. I do a lot of walking. Every day I'm moving."
lbowean@tribune.com
FRANK WATSON
Sometimes strangers ask Frank Watson about his limp or note the stiffness of his right arm.
Watson, the former Republican leader of the Illinois Senate, often gives a vague response.
"I just say, 'It's an old injury,'" Watson said. "Because that's what it was."
In late 2008, Watson was campaigning when he began slurring his words and lost movement in his right arm and leg. Doctors later discovered that a clot had caused him to have a stroke in his brainstem.
Simple comprehension tasks suddenly were insurmountable. Watson, now 66, was unable to read a short passage of text and remember the details, and he had problems organizing colors. Due to right-side paralysis, he couldn't walk or write.
Watson, a skilled orator and legislator, said he felt uncertain and depressed.
Still, he was re-elected to the Senate the following month. Although he relinquished his leadership position, Watson returned to his job in February 2009 believing that he could regain his abilities in several months. His rehabilitation was more difficult than he anticipated, however, so he decided to devote himself completely to recovery and resigned later that month.
"I just thought I wouldn't be able to do the job justice," Watson said.
Rehabilitation became Watson's fixation. He spent hours a day strengthening his mind, trying to recall as many animals as he could think of in a zoo, as many tools as he could think of in a toolbox, working crosswords and anagrams and reading his favorite authors. He stood in front of a mirror, reciting the alphabet and rehearsing tongue-twisting phrases. He also plodded through physical exercises, turning a crank using his right arm and lying on the floor to do leg lifts.
Watson moved from a wheelchair to a walker to a cane and eventually could walk unassisted.
But he still vividly recalls the first time he encountered an escalator while shopping with his wife.
"I couldn't take the step, a simple thing like that," Watson said. "It was just my balance, the steps are moving and I'm standing still, and I just didn't have the confidence."
Regaining a belief in himself has been a crucial part of Watson's recovery. Over the years, Watson has relearned how to write and has switched from Velcro to shoelaces. Although he still hesitates on escalators, avoids carrying liquids in a glass and has muscle spasms in his right leg, Watson said he hopes he will continue to improve.
He reads avidly, uses his relaxing time to do muscle exercises and has been trying to strengthen his motor skills — even when it means putting himself in frustrating situations.
On Thursday, Watson said he and his son-in-law went golfing, a sport that Watson used to love.
"Now it's like army golf: I hit the ball, and it goes right. I hit the ball, and it goes left," Watson said. "But I'm out there enjoying life, and that is a big part of it."
EDWARD MOGUL
Edward Mogul can deconstruct biblical Hebrew and detail Plato's dialogues and the Illinois criminal code with ease.
But basic tasks, such as tying shoelaces, cutting food and driving, remain beyond his reach.
In April 2011, a blood clot lodged in the left side of Mogul's brain, paralyzing the right side of his body and weakening the robust voice he had used for decades in Chicago courts as a trial lawyer and in classrooms as a teacher.
"I didn't feel pain, but I was helpless," said Mogul, 66. "And for a man of my age, who's never been helpless before, I didn't like it."
So Mogul focused on mastering the minuscule — willing his fingers to wiggle, trying to shift his ankle. He spent hours sweating on a treadmill, wearing a harness strung from the ceiling, and pedaling a recumbent bike. After months of therapy, Mogul could walk using a cane.
He had bars installed in his bathroom at home and got used to wearing elastic shoelaces and going without a tie. He hired his father's former caregiver to give him daily help administering medicines and driving around town. And he became familiar with the CTA bus system.
His first attempt at public transportation proved particularly challenging. After he slowly walked to a bus stop one morning and struggled aboard the bus, an older woman stood up and gave Mogul her seat, which he took gratefully.
"It encapsulated how my position had changed a bit," said Mogul, chuckling.
Although doctors advised him to lighten his workload, Mogul said he still took a case fewer than two months after the stroke.
"Because my body failed me, I wanted to prove to myself, I think, that my mind was just as strong," Mogul said.
Mogul won the case, but the physical strain led him to scale back and focus on rehab. He took the summer off, dropped his teaching load to one class a semester and avoided going to court when possible.
Mogul still spends hours a week on his physical rehab and hopes to drive soon.
He said that in some ways the stroke has taught him about himself, what is important in life and what he is capable of withstanding.
Last week, Mogul stood in front of students at Wright College, steadying himself against the lectern with his left hand, and asked them to think about similar questions as they progressed through Plato's writings and their own lives.
"Does my life have any meaning?" Mogul instructed the students to ask themselves. "Does my life have a purpose? Who am I?"
kskiba@tribune.com
cdizikes@tribune.com
lbowean@tribune.com
Copyright © 2012, Chicago Tribune
History Teacher Lady at 9:24 AM January 29, 2012 These are all wonderful stories on recovery for those fortunate enough to have medical coverage. When my husband had his stroke Thanksgiving weekend of 2010 he went through all of the same recoveries until April of 2011. That was when we were informed that we no longer had medicaid because our son turned 18. He was still completing senior year but because my husband had lost his job earlier that year and I was laid off with 1200 other Teachers that year we had an income, unemployment (my sole unemployment) that was too high for a family of 2. We were a family of 3. I guess my son was suppose to quit school during his senior year once he turned 18.
Tonya Windham at 8:43 PM January 30, 2012 this re to the letter under this one. i understand the stuff about medicaid and medican i had the same issues. the cost i went broke over therapy and medican. i have 2 kids and i had to keep my house. i took care of him and still do. in order to get any food stamps and other help from the state i was told i was going to have to get rid of a car or truck. i already spent all the savings on him so there was not that.we was getting ssi and that was 570 a month. it was hard. so i understand. i hope now that this man has had a stroke changes will be made and looked into. good luck to them. i wish you well. it is a hard road to go down. my husband to is disabled for life. limited words and can't use his right arm hand or leg or foot. the is no therapy.
this is serious and in order to help medicare needs changes to meet needs and
have therapy that ones may need.