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August 30, 2014 / 4 Elul, 5774
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The Long Road of Stroke Recovery


Stroke-053112-Lokomat

What does an elected official in his fifties have in common with a young Chassidic father, a young mother who works as a freelance copy editor, and a 21-month old infant? All four individuals, from very different backgrounds and walks of life, suffered a stroke which robbed them of some of their previous abilities, and prompted an individualized recovery process which is likely to last for the rest of their lives.

Of the four, only New York State Assemblyman Steven Cymbrowitz, representing the 45th Assembly District in Brooklyn, experienced the classic symptoms that we usually associate with a stroke, a sudden interruption of normal blood flow to a portion of his brain as the result of a blood clot, which nearly took his life one morning in March, 2005. They are all part of a fellowship of more than 500,000 people in the United States each year who suffer a stroke or traumatic brain injury (TBI), leaving one-third of them with a permanent disability.

Strokes are the third leading cause of death in the U.S. They are usually associated with middle aged or elderly individuals, but they can befall individuals at any age, even young children. According to Chavie Glustein, the founder and director of BINA, a Brooklyn-based organization providing a broad range of services to hundreds of families dealing with the aftermath of stroke and brain injury, in discussions of treatment and recovery, TBI is often included with stroke, because its impact on the patient is often virtually identical to that of a stroke. TBI can result from common events such as falls, vehicular accidents, and sports injuries, to name a few, and is a leading cause of death and disability in children and young adults.

While the severity and effects of stroke and TBI vary widely, medical science has developed an effectively arsenal of medical equipment, medications and therapies to treat victims of both conditions, and to assist in their recovery. Those who survive often require years of therapy and rehabilitation, and even those who successfully recover will still have to deal with the effects years after resuming their normal day-to-day activities.

Lifesaving Decisions

Assemblyman Cymbrowitz credits his wife Vilma for saving his life by telling the ambulance driver who responded to her 911 call to take him directly to the Stroke Center of Maimonides Hospital in Brooklyn. There a team of specialists used the MERCI (Mechanical Embolus Retrieval in Cerebral Ischemia) Retriever to remove the blood clot which was blocking one of his cerebral arteries.

Cymbrowitz survived because he received aggressive treatment within the critical initial 180 minute period from the onset of symptoms, what doctors call the “golden hour.” The prompt treatment also limited the damage the stroke did to his brain, and enabled him to recover very quickly. He returned to Albany to resume his official duties just two weeks after suffering the stroke, but today, seven years later, he is still dealing with its more lasting effects.

Younger Victims

A. is a 5-year-old girl who suffered extensive brain damage from a stroke at the age of just 21-months. Her doctors still do not understand what triggered the stroke, but the effects of her cerebral infarction (the death of brain tissue due to the interruption of the blood supply), were devastating.

A. had experienced some earlier developmental delays, but just before she suffered her stroke, seemed to be catching up. She was babbling happily and on the verge of starting to walk, when the stroke came on without warning. In a coma and barely breathing, A. was rushed to the hospital by her frantic parents.

When she came out of the coma, it was soon clear that she had suffered a major setback to both her physical and cognitive development. She could no longer stand or even crawl. She was subject to seizures, and lost her ability to babble.

Medication stopped the seizures and thanks to intensive physical and occupational therapy, A. can now walk and even run. But she is still at a cognitive development level of about 12-18 months. She has virtually no ability to communicate, and her progress in speech therapy is painfully slow.

A. now attends a special needs school not far from her home in Great Neck, Long Island. Her parents are grateful for the support they have received from their community and groups like BINA, which provided them with encouragement and the latest information on the wide range of treatments and resources available for their daughter and other stroke and TBI victims.

Causes and Effects

The survival rate for stroke and TBI has been significantly improved by the establishment of stroke centers like the one at Maimonides, equipped with the latest imaging equipment, medications and treatment devices, and a specialized staff experienced in their effective use. A significant advance is the introduction of computer-controlled robotic devices such as the Lokomat (depicted on the cover) at leading rehabilitation and stroke recovery centers around the world. Lokomat provides patients who cannot stand or walk on their own with physical support against the pull of gravity and motorized assistance for their limbs and muscles. It also has a computer monitor which uses video game-type simulations to give the patient instant positive or negative feedback on their movements on the treadmill. The result is more productive therapy sessions, speeding up the recovery process.

Strokes in older patients are often caused by a blood clot which blocks an artery in the brain which has been narrowed by arteriosclerosis, a condition which is usually associated with high cholesterol and poor eating habits. Strokes can also be caused by an aneurysm, which is a weak part of a blood vessel which expands, putting pressure on the surrounding brain tissue. If the aneurysm bursts, the hemorrhaging inside the brain can quickly become life-threatening.

Yossie Federman is a young man from a religious Boro Park family who suffered a stroke on January 18, 2005. That day his life changed. He has no memory of the stroke itself. It left him in a coma for the next three weeks. He finally awoke blind and unable to speak.

Doctors believe that Yossie’s stroke was caused by an abnormal connection of the veins and arteries called an arteriovenous malformation, or AVM. About 300,000 Americans have AVM, but only about 10% of them ever suffer noticeable symptoms from it. The only advance warning that Yossie received from his AVM was a series of severe headaches over of six months. However, the AVM did not show up on a CAT scan of his brain, so Yossie’s doctor diagnosed his headaches as simple migraines.

The stroke damaged areas on the left side of Yossie’s bran that control the movements of his right arm and leg, which is a common effect of strokes. In these cases, one of the goals of therapy is to stimulate equivalent areas on the other, undamaged side of the brain to take over the lost functions.

Restoring Independence

Yossie says that the worst part of his stroke was the initial blindness and forced separation from his family. He was determined to return home and resume his normal life as quickly as possible. After checking himself out of rehab to go home for Purim against doctor’s recommendations, Yossie refused to go back, and eventually developed his own rehab program to supplement his regular therapy.

Yossie has shared his rehab experiences on his web page, www.strokerr.com. He says that he has tried just about every treatment and therapy available, but his recovery has been uneven. He has regained enough vision to be able to safely drive a car, and he can now communicate his thoughts clearly, although more slowly than before. However, he has still not regained the full use of his right arm and leg, and is still unable to walk very far unassisted. To enhance his mobility, Yossie came up with the idea of modifying an adult tricycle which he could push with his good left leg alone. The idea worked. The tricycle has increased Yossie’s independence and encouraged him to be more active and to get up and around.

Yossie has also resumed his Torah learning, on a limited schedule. He goes to a local Bais Medrash each day for 30-minute sessions studying Gemorah and Chumash to “give my brain a workout.” But he tires more easily now, and needs more sleep each night than he did before his stroke.

Yossie has not been able to resume to his previous vocation as a keyboard pianist, but he does have a marketable skill that he is using to help support his family. He runs a small business called AjMyer Engravers & Signs (www.ajmyer.com) which creates signs in English or Hebrew for commercial or institutional use. With the tireless support of his wife, Esther and their six children, and much help and encouragement from the Boro Park community, Yossie has been able to resume a normal life.

Fighting Back

Assemblyman Cymbrowitz recalls that his first reaction to his stroke was shock and disbelief, but like Yossie, he refused to give in to despair. His fierce determination and intensive therapy helped him to recover his physical functionality quickly and to resume his normal activities as an elected official, but seven years after his stroke, he is still fighting the stroke’s lingering effects.

As someone in public life who is photographed often, Cymbrowitz admits that he is sensitive to the fact that the stroke has slightly changed the appearance of the left side of his face when he smiles. Because he is left-handed, the stroke initially made his handwriting illegible. After diligent practice each day with a pad and pencil, it is now legible once again, but his signature is different than it was before.

Cymbrowitz is still working to overcome the stroke’s impact on his memory. The stroke initially left him with difficulty associating the right name with the faces of people he met, and had trouble remembering numbers. Upon his return to the State Assembly in Albany, he enjoyed the support and encouragement of his fellow legislators who played an active role in helping him to recover some of these lost abilities. Speaker Sheldon Silver gave him the job of taking attendance at Democratic party caucus meetings, giving him much-needed practice in re-learning how to associate names with faces. Other Albany colleagues would patiently help him when he would stumble over certain words or could not remember a phone number.

Cymbrowitz has learned to compensate for these deficits. He writes more things down now, routinely repeats phone numbers and constantly practices putting names to faces. He has also learned to accept certain limitations. “I need to be reminded more. I don’t recall some events,” he admits. But he also says that in the process of recovering from his stroke, he has gained in other ways. “I have learned that when I am determined enough – when I really set my mind to something – I can usually accomplish it. But I have also become more accepting in myself of those shortcomings that I know I can’t change,” he said.

Cymbrowitz does not claim to be a religious person, but he says that since his stroke, “I thank G-d every morning that I can put both feet down on the floor – and people who know what I went through understand.”

In Denial

Cymbrowitz’s conscious reaction during the first moments of his stroke was confusion and denial. In a published account of the incident, he recalled waking up one morning feeling fine, and trying to go outside his house to pick up the newspaper.

“[My wife] Vilma, in the other room, heard me struggling to walk [and] immediately suspected that something was wrong. She saw that I couldn’t keep my balance as I lumbered awkwardly toward the front door. Once there, I couldn’t even grasp the doorknob. My left hand and entire left side were beginning to go numb although, incredibly, I didn’t even realize it. . .

“Vilma turned me around to face her and, alarmed, saw in my face that paralysis was beginning to set in on the left side. Calmly she told me, “I think you’re having a stroke,” and helped me over to the sofa. She then ran to the phone to call 911.

“Refusing to believe I was actually having a stroke, I attempted to get up from the sofa. It was an ill-conceived plan. After Vilma got off the phone with 911, she was then faced with the arduous task of trying to get me off the floor and back on the sofa.”

Unseen Impacts

The cognitive effects of stroke can be even more difficult and frustrating than the physical disabilities it causes. A stroke can leave its victim still in full control of their limbs, impacting only their cognitive abilities and their power of speech. That is what happened to a young mother we will call M. She woke up one morning early last year with an uneasy feeling that something was wrong, even though physically she felt fine. She then discovered to her shock and horror that she had lost the power to say the words she wanted to. When she tried to say, “But I feel fine,” all that came out of her mouth were 3 random words in Hebrew.

Unable to express herself verbally, M. tried to write a note with the word “stroke” on it to explain to her husband what was going on. Instead, it came out on paper as “skrote.” When she realized that she had lost her ability to communicate easily with those around her, she became truly concerned. “I was used to being a step ahead of everything, not a step behind,” M. wrote.

She remembers “feeling frustrated that I had so much to do – I didn’t have time to deal with all this. I wanted to be done with it so I could get back to what was really important and pressing in my life.” M. finally burst into tears when she realized that she could not even say the names of her two young children.

The full impact of the stroke on her life was masked by her outward appearance. She recalls that, “when acquaintances saw me shortly after I returned home, they were surprised at how good I looked. After all, I wasn’t physically affected. But for me, I was profoundly affected by my aphasia, as mild as it was. Language was my trade, my skill, my talent, and my strength.”

The Importance of Family Support

M. credits her mother for helping her through those difficult early days. “My mother kept me on track, making sure I was not delving into self-misery or despair. She became my speech therapist and my coach – without making me feel like she was doing it for my sake. She managed to make me feel as though we were just spending much-needed quality time together.”

M.’s recovery process was very different from that of Assemblyman Cymbrowitz. Even though she had suffered a stroke, since it was not considered to be life threatening, her private insurance company was unwilling to pay for an extended hospitalization, and only agreed only to cover the cost of her therapy on an outpatient basis. With the help of BINA and family connections, she was finally able to secure a spot at a highly regarded outpatient rehab clinic.

M. also received constant support and encouragement from her husband and family. “Keeping busy with my kids served as the best kind of therapy possible. Even reading them simple bedtime stories is actual therapy – and they could not care less whether I needed to repeat a word 3-4 times to get it right. They laughed with me when I made a silly word substitution or pronounced a word in an amusing way,” she recalls.

M. sees other significant changes in herself since suffering her stroke. She is now less likely to share her opinion with others, because communicating takes so much more effort than it used to. She has also become “more sensitive to how people talk over each other without listening to each other.”

Looking Forward

Several months ago, M. put her rehabilitation on hold to help her daughter through a complicated medical procedure of her own. But she is now working once again to recover her language skills and redevelop the distinctive writing “voice” that she lost due to her stroke. With all that has happened to her over the past year, she views her life now as a “work in progress,” but is clearly looking forward to better tomorrow.

Yossie Federman also lives in hope that experiments in stem cell research and cloning technology will someday lead to breakthroughs that will restore the abilities he has lost. In the meantime, he says that he sees no point in looking back. His primary goal is to start off his children on the right Torah derech. His stubborn optimism and good cheer is a constant source of inspiration to his wife and and family, and his many friends in the community.

After going through “rough times” at first, A’s parents say that they have come to terms with their daughter’s situation. Nevertheless, they admit that it is painful to see other children her age who can do so many things which are beyond A.’s current capabilities, and likely to remain so for a long time. In the meantime, they have learned to appreciate every small milestone of progress that she achieves. “If she is happy, then we are happy. Our family life goes on, one day at a time,” A.’s mother says.

Stroke and brain injury victims and their families are not alone. Assemblyman Cymbrowitz is on a personal mission to inform the public about stroke and brain injury by forthrightly sharing his own experiences. There are dedicated community organizations, like BINA, to provide victims and their families with sound information, advice and emotional support. Prestigious hospitals, talented therapists and medical researchers are all working to provide hope for a better future for the victims and to save more lives from these deadly and debilitating conditions.

In the meantime, it is our responsibility to support those among us who will spend the rest of their lives recovering from stroke and brain injury with our compassion, understanding and prayers.

Stroke Facts

How many people have strokes?

Each year 700,000 people in the US suffer a stroke. Five hundred thousand of these strokes are first occurrences, while the rest are repeat strokes.

What are the effects of stroke?

Stroke is the third leading cause of death in America and the No. 1 cause of adult disability. There are 7 million stroke survivors living in the US today and two-thirds of them are disabled.

What are the most common types of stroke?

Ischemic strokes due to a blockage of blood flow to an area of the brain account for 87% of all strokes. The other 13% are hemorrhagic strokes due to bleeding inside the brain.

Stroke Warning Signs:

* Sudden numbness or weakness of the face, arm or leg, especially on one side of the body

* Sudden confusion, trouble speaking or understanding

* Sudden trouble seeing in one or both eyes

* Sudden trouble walking, dizziness, loss of balance or coordination

* Sudden, severe headache with no known cause

If you detect one or more of these signs, call 911 immediately!

Traumatic Brain Injury (TBI) Facts:

How many people have TBI?

Of the 1.7 million who sustain a TBI each year in the United States:

52,000 die

275,000 are hospitalized

1.365 million are treated and released from an emergency department.

The CDC estimates that 6 million Americans currently have a long-term or lifelong need for help to perform activities of daily living as a result of a TBI.

What causes TBI?

Falls (35.2%);

Motor vehicle-traffic crashes (17.3%);

Struck by/against events (16.5%);

Assaults (10%)

Unknown/Other (21%).

Stroke and Brain Injury resources for more information:

BINA Stroke and Brain Injury Assistance: http://www.binausa.org/

National Institutes of Health – National Institute of Neurological Disorders and Stroke: http://www.ninds.nih.gov/disorders/stroke/stroke.htm

http://www.ninds.nih.gov/disorders/tbi/tbi.htm

Brain Injury Association of America: http://www.biausa.org/

American Heart Association/American Stroke Association: http://www.strokeassociation.org/STROKEORG/

National Stroke Association: http://www.stroke.org/site/PageNavigator/HOME

The Brain Aneurysm Foundation: http://www.bafound.org/

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