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1 StrokeAssociation.org SPECIAL EXTENDED FEATURE: New Developments in Rehab Advances in brain science open doors for new recovery options Kitchen Modifications Tips for making your kitchen work for you Life at the Curb Too much support Stroke Connection is underwritten in part by Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership, makers of Plavix. Know the Signs Actress and caregiver Morgan Fairchild takes on a new role campaigning for greater awareness

2 JULY AUGUST 2008 Contents STROKECONNECTION STAFF AND CONSULTANTS: Dennis Milne Vice President American Stroke Association 24 Wendy Segrest Director American Stroke Association Operations Debi McGill Editor-in-Chief Jon Caswell Lead Editor Pierce Goetz Art Director Cheryl Bober Advertising Sales Stroke Connection Magazine is underwritten in part by Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership, makers of Plavix. Produced and distributed in cooperation with Vitality Communications a division of Copyright 2008 American Heart Association ISSN X Stroke Connection is published six times a year by the American Stroke Association, a division of the American Heart Association. Material may be reproduced only with appropriate acknowledgment of the source and written per mission from the American Heart Association. Please address inquiries to the Editor-in-Chief. The information contained in this publication is provided by the American Stroke Association as a resource. The services or products listed are not owned or provided by the American Stroke Association. Additionally, the products or services have not been evaluated and their listing or advertising should not be construed as a recommendation or endorsement of these products or services. 16 Stories 16 New Developments in Rehab Neuroplasticity is introducing a new paradigm of recovery. We investigate eight new techniques and technologies that harness this new discovery and are changing the future of rehab. 24 Give Me 5 Caregiver and actress Morgan Fairchild leads a new public awareness campaign that aims to make identifying a stroke as easy as remembering five words. 26 Departments 2 Letters to the Editor 6 Stroke Notes 10 Readers Room 23 Life at the Curb 26 Everyday Survival StrokeAssociation.org S T R O K E ( )

3 All trademarks are owned by Société des Produits Nestlé S.A., Vevey, Switzerland.

4 YOUR LETTERS Connecting You to Us Hanging in There I read the letter from Mary Jo Hughes in the November/ December 2007 issue. I know exactly how she feels. I am four years post-stroke, and the only time I can get into rehab is if I get sick. Then the doctor can put me in the rehab center so I can regain my strength. The last time I was admitted it only lasted two days because the therapist informed me that the insurance company said that I had been in this condition so long that they didn t see any reason to pay for me to get better. It s hard to believe that was the reason to refuse therapy. I know the feeling of loneliness because I live in Indiana and my sisters and brother live in Connecticut. My wife died five years ago, and my two sons are so busy, they are not able to visit me very often. Hang in there, Mary Jo! Melvin Norfleet, Survivor Evansville, Indiana A Hole in Her Heart After reading the March/ April issue, I felt compelled to share some of my experiences in the hope that they will be useful to others. Over the years there have been several stories about younger people having strokes. I had a brain stem stroke seven years ago, when I was 34. Since I was so young and had no other risk factors, my doctor wanted to know why it happened. So six months after the stroke, he sent me for a transesophageal echocardiogram (TEE) test to look at the back side of my heart. And there it was, a hole. My septum (the wall between the chambers of the heart) never sealed properly at birth. It is believed that a clot passed through the hole and lodged in my brain stem, thus causing the stroke. I ve since had the hole closed. Being on Medicare as I recover from my stroke and a diagnosis of locked-in syndrome, I have had to be creative about therapy. I have found a water exercise class for stroke survivors at the local hospital s health and wellness center. Fortunately, since I am in a wheelchair, they have a lift to put me in the water. Plus I can have a caregiver in the water at no additional cost. It s amazing what you can do in the water that you can t do on land. Michele Boshkoff, Survivor Westmont, Illinois What a Stroke Has Meant to Him Your Letters to the Editor are very depressing. My stroke was a part of living, not part of dying. Here s what having a stroke in May 1998 has meant to me: Finding new avenues of learning computers, time to read interesting articles. Helping others giving helpful advice to others who have had strokes. Keeping busy mentally I m so busy, I don t know when I had time to work. Thinking of others and not myself doing for others whatever you can. Reading about others who have overcome stroke in the 10/31/07 edition of The Wall Street Journal, I read about a Japanese concert pianist who had a stroke affecting his right side, so he learned pieces he could play with his left hand and has returned to the concert hall. Never being self-conscious about having a stroke it could happen to anyone at any age! And last but not least, where there is a will, there is a way. Frank Mangano, Survivor Ventnor City, New Jersey (letters continued on page 5) We d like to hear from you! US AT: Or send letters to: Editor-in-Chief, Stroke Connection, 7272 Greenville Avenue, Dallas TX Letters may be edited for length and scientific integrity. The opinions presented are those of the individual and do not reflect those of the American Stroke Association. 2 STROKECONNECTION July August 2008

5 After surviving a stroke, some of the toughest challenges are the ones you can t see. MAJOR RISK OF ANOTHER STROKE INCREASED RISK OF A HEART ATTACK If you ve had a stroke, you may be facing a major risk of having another. You may also be at increased risk for having a heart attack. PLAVIX is the only prescription antiplatelet medicine that helps protect against both. Recovering from a stroke can be difficult and you ve worked hard to make progress. If you ve recently had a stroke, you should know PLAVIX can help protect against another stroke or even a heart attack. PLAVIX may be right for you. Be sure to talk to your doctor to find out. IMPORTANT INFORMATION: If you have a stomach ulcer or other condition that causes bleeding, you should not use PLAVIX. When taking PLAVIX alone or with some other medicines including aspirin, the risk of bleeding may increase, so tell your doctor before planning surgery. And, always talk to your doctor before taking aspirin or other medicines with PLAVIX, especially if you've had a stroke. If you develop fever, unexplained weakness or confusion, tell your doctor promptly as these may be signs of a rare but potentially life-threatening condition called TTP, which has been reported rarely, sometimes in less than 2 weeks after starting therapy. Other rare but serious side effects may occur. Please see important product information for PLAVIX on the following page. Blood platelets can stick together and form clots. PLAVIX helps keep blood platelets from sticking together. PLAVIX offers protection. PLAVIX is proven to help keep blood platelets from sticking together and forming clots, which helps keep your blood flowing. Since clots are the leading cause of strokes and heart attacks, PLAVIX helps you stay protected. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit or call FDA Talk to your doctor about PLAVIX. For more information, visit or call If you need help paying for prescription medicines, you may be eligible for assistance. Call PPA-NOW ( ). Or go to US.CLO /May 2008 Printed in USA 264US08AB sanofi-aventis U.S. LLC 2008 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership

6 WHO IS PLAVIX FOR? PLAVIX is a prescription-only medicine that helps keep blood platelets from sticking together and forming clots. PLAVIX is for patients who have: had a recent heart attack. had a recent stroke. poor circulation in their legs (Peripheral Artery Disease). PLAVIX in combination with aspirin is for patients hospitalized with: heart-related chest pain (unstable angina). heart attack. Doctors may refer to these conditions as ACS (Acute Coronary Syndrome). Clots can become dangerous when they form inside your arteries. These clots form when blood platelets stick together, forming a blockage within your arteries, restricting blood flow to your heart or brain, causing a heart attack or stroke. WHO SHOULD NOT TAKE PLAVIX? You should NOT take PLAVIX if you: are allergic to clopidogrel (the active ingredient in PLAVIX). have a stomach ulcer have another condition that causes bleeding. are pregnant or may become pregnant. are breast feeding. WHAT SHOULD I TELL MY DOCTOR BEFORE TAKING PLAVIX? Before taking PLAVIX, tell your doctor if you re pregnant or are breast feeding or have any of the following: gastrointestinal ulcer stomach ulcer(s) liver problems kidney problems a history of bleeding conditions WHAT IMPORTANT INFORMATION SHOULD I KNOW ABOUT PLAVIX? TTP: A very serious blood condition called TTP (Thrombotic Thrombocytopenic Purpura) has been rarely reported in people taking PLAVIX. TTP is a potentially life-threatening condition that involves low blood platelet and red blood cell levels, and requires urgent referral to a specialist for prompt treatment once a diagnosis is suspected. Warning signs of TTP may include fever, unexplained confusion or weakness (due to a low blood count, what doctors call anemia). To make an accurate diagnosis, your doctor will need to order blood tests. TTP has been reported rarely, sometimes in less than 2 weeks after starting therapy. Gastrointestinal Bleeding: There is a potential risk of gastrointestinal (stomach and intestine) bleeding when taking PLAVIX. PLAVIX should be used with caution in patients who have lesions that may bleed (such as ulcers), along with patients who take drugs that cause such lesions. Bleeding: You may bleed more easily and it may take you longer than usual to stop bleeding when you take PLAVIX alone or in combination with aspirin. Report any unusual bleeding to your doctor. Geriatrics: When taking aspirin with PLAVIX the risk of serious bleeding increases with age in patients 65 and over. Stroke Patients: If you have had a recent TIA (also known as a mini-stroke) or stroke taking aspirin with PLAVIX has not been shown to be more effective than taking PLAVIX alone, but taking aspirin with PLAVIX has been shown to increase the risk of bleeding compared to taking PLAVIX alone. Surgery: Inform doctors and dentists well in advance of any surgery that you are taking PLAVIX so they can help you decide whether or not to discontinue your PLAVIX treatment prior to surgery. WHAT SHOULD I KNOW ABOUT TAKING OTHER MEDICINES WITH PLAVIX? You should only take aspirin with PLAVIX when directed to do so by your doctor. Certain other medicines should not be taken with PLAVIX. Be sure to tell your doctor about all of your current medications, especially if you are taking the following: aspirin nonsteroidal anti-inflammatory drugs (NSAIDs) warfarin heparin Be sure to tell your doctor if you are taking PLAVIX before starting any new medication. WHAT ARE THE COMMON SIDE EFFECTS OF PLAVIX? The most common side effects of PLAVIX include gastrointestinal events (bleeding, abdominal pain, indigestion, diarrhea, and nausea) and rash. This is not a complete list of side effects associated with PLAVIX. Ask your doctor or pharmacist for a complete list. HOW SHOULD I TAKE PLAVIX? Only take PLAVIX exactly as prescribed by your doctor. Do not change your dose or stop taking PLAVIX without talking to your doctor first. PLAVIX should be taken around the same time every day, and it can be taken with or without food. If you miss a day, do not double up on your medication. Just continue your usual dose. If you have any questions about taking your medications, please consult your doctor. OVERDOSAGE As with any prescription medicine, it is possible to overdose on PLAVIX. If you think you may have overdosed, immediately call your doctor or Poison Control Center, or go to the nearest emergency room. FOR MORE INFORMATION For more information on PLAVIX, call or visit Neither of these resources, nor the information contained here, can take the place of talking to your doctor. Only your doctor knows the specifics of your condition and how PLAVIX fits into your overall therapy. It is therefore important to maintain an ongoing dialogue with your doctor concerning your condition and your treatment. Distributed by: Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership New York, NY PLAVIX is a registered trademark of sanofi-aventis. PLA-OCT07-B-Aa

7 YOUR LETTERS (Continued) When Seconds Count, Count on Stroke Opened a Door to His Imagination Megan Timothy s wonderful story (Let Me Die Laughing, September/October 2007) inspires me to tell about my own post-stroke writing odyssey. I began my career as a journalist and always hoped that after 25 years as a foundation executive, I would retire and get the opportunity to write again. However, less than a month after my retirement in 2005, I got nailed by an intracerebral hemorrhage that took away all sensations on my right side. But it turned out to be a stroke of good luck, because it wasn t what it took away that mattered, it was what it left me memory, imagination and a good left hand to type with. I began writing a historical novel of the Civil War in Indian Territory, a book that I had jotted down pieces of when I lived in Oklahoma 40 years ago. It was rough going at first I would transpose letters, forget characters, have to look up dates two or three times and stare long minutes at the computer screen trying to remember the name of the day that came after Tuesday. Thanks to the encouragement of my therapists, friends and family, the veils that obscured my mind eventually parted, leaving me with a vivid imagination and the pure joy of creation. As Megan Timothy knows only too well, seeing that finished book in my hand was an indescribable high. In my case, my stroke opened doors instead of closing them, and I look forward to many pleasurable years of writing. Maybe I should call my next book My Left Hand. Jack Shakely, Survivor Rancho Mirage, California ReadyResponse TM Emergency help 24 hours even when you can t reach the phone Personal activator button connects you to an operator who sends help FREE Activation Mention code SC005 when ordering. For more information or to order call ALERT ( ) or walgreensreadyresponse.com Peace of mind for only $34.95 per month, with no long-term contract. Monitoring service provided by American Medical Alert Corp. Aphasia + Medicare = you are unable If to speak due to aphasia, and have Medicare Part B, you may be entitled to a Lingraphica speechgenerating device. The Lingraphica makes it easy to communicate with friends and family. And you can practice as much as you want. Call our toll-free number to find out if you qualify MEDICARE REIMBURSABLE July August 2008 STROKECONNECTION 5

8 STROKE NOTES Connecting You to the World Initial Success of Intracranial Stents New devices bring hope for those at highest risk preliminary study funded by the National Institutes of Health (NIH) found that a stent designed to open clogged arteries in the brain was successfully deployed in nearly all cases and reduced arterial blockage in the short term. But data on the long-term benefit of the stent, compared to medical treatment alone, were inconclusive, prompting the upcoming launch of a large-scale randomized trial that is expected to provide definitive results. Treatment options for stroke patients with severe blockages are extremely limited, said neurosurgeon Michael J. Alexander, M.D., director of the Cedars-Sinai Neurovascular Center. Compared to the situation in blocked heart arteries where options include angioplasty, stenting and surgical bypass, there is no surgical option for these blockages in the brain. This stent may be a major advance for patients with arterial narrowing who have a stroke or transient ischemic attack (TIA). Previously they could just take medication and expect a high recurrent stroke rate. This trial followed another NIH-funded study comparing two blood-thinning medications commonly used to treat narrowing of intracranial arteries. The Warfarin-Aspirin Symptomatic Intracranial Disease Study (WASID) found that warfarin (brand name Coumadin) and aspirin provided similar stroke protection, but aspirin was associated with a lower risk of hemorrhage and related complications. The WASID study also found that a patient who recently had a stroke or TIA and suffered a cranial artery blockage of 70 percent or higher had a 22 percent chance of having another stroke within the first year, regardless of medication used. While the objective of the WASID trial was to compare the two drugs, results provide a baseline against which other therapies can be compared. We know that patients with 70 to 99 percent blockage and TIA or stroke within the previous 30 days are at highest risk of having another stroke, Alexander said. These are the patients who have the most to gain from stenting and are the ones we will target for enrollment in the randomized trial of stenting versus medical therapy. How A Stent Works A stroke can occur when one of the arteries in the brain becomes narrowed or blocked, preventing normal blood flow to that region of the brain. The narrowing of the artery is caused by a thickening of the arterial wall. This is a condition known as arteriosclerosis. A mesh stent is inserted into the narrowed artery and expanded with a balloon-like device. The stent is left in place, allowing blood to flow normally through the artery. Source: Neurology online journal, January 2008 Adapted from the American Heart Association's ACLS Resource Text, Illustrations by Pierce Goetz 6 STROKECONNECTION July August 2008

9 for function. for freedom. for life. NESS H200 HAND REHABILITATION TION SYSTEM Designed to help the hand open and close, help you perform daily 1,2 activities and help reeducate your muscles over time. NESS L300 FOOT DROP SYSTEM Designed to lift the foot during the swing phase of gait (a manner of walking). Clinical evidence suggests s the L300 may increase speed, 3,4 stability and social participation in certain patients with foot drop. Individual results vary. Consult with a qualified physician to determine if these products are right for you. Contact us at option 2 BIONESS.COM 1 - Alon G, et al. J Stroke and Cerebrovascular Dis. 2002;11: Alon G, et al. NeuroRehabilitation. 2003;18(3): Hausdorff JM, et al. J Neurol Phys Ther Dec 30 (4): Hausdorff JM, et al. Am J Phys Med Rehab. 2008;87(11( ):4-13. NESS, NESS L300, NESS H200, Intelli-Gait and Intelli-Sense Gait Sensor are trademarks of Bioness Neuromodulation Ltd, Ra anana, Israel Manufacturer: Bioness Inc. Bioness, the Bioness Logo, LiveOn and For Function. For Freedom. For Life. are trademarks of Bioness Inc., Valencia, CA Rx Only BG08

10 STROKE NOTES Connecting You to the World Help with the Grocery List Most shoppers make a list, then forget it ew research from the American Heart Association shows that 74 percent of female grocery shoppers make a grocery list, but nearly 70 percent forget to take it with them to the store. Now there s a solution for forgotten lists. The association has created an online grocery-list builder that lets you download your list from your Web-enabled mobile phone or personal digital assistant (PDA), making forgotten grocery lists a thing of the past. To access the easy-to-use tool, go to heartcheckmark.org and click My Grocery List to build your free heart-healthy grocery list. Choose from hundreds of foods certified by the American Heart Association to be low in saturated fat and cholesterol. You can also add other needed items in the My Items category. Enter your address to save your list for future use. Print, and go, or download your list from your Web-enabled mobile phone or PDA by visiting mylist.heartcheckmark.org. Busy people rely on technology to keep them organized. Now it s easy to keep your grocery list on your Web-enabled mobile phone or PDA and feel confident that you are selecting foods low in saturated fat and cholesterol, said Penny Kris-Etherton, R.D., Ph.D., professor of nutrition at Pennsylvania State University. For more information about My Grocery List or the American Heart Association s Food Certification Program, visit heartcheckmark.org. FDA Tobacco Bill Progresses Tobacco legislation nearing final vote Legislation giving the Food and Drug Administration (FDA) the authority to regulate tobacco products is making headway in Congress. In April, the U.S. House of Representatives Energy and Commerce Committee passed the Family Smoking Prevention and Tobacco Control Act by a vote of This follows the Senate Health, Education, Labor and Pensions Committee s approval of this legislation in August The next likely step for this bill is a vote by the full House of Representatives. Members of Congress have the opportunity to come together and pass the most significant federal tobacco control legislation in American history, said M. Cass Wheeler, CEO of the American Heart Association. In this time of acrimonious politics, our elected officials should make the most of this chance to enact legislation that the majority of Americans want and need. Smoking is responsible for 150,000 cardiovascular disease deaths each year and is one of the leading risk factors for stroke. Yet tobacco products are subject to less oversight than products like pet food and orange juice. The Family Smoking Prevention and Tobacco Control Act would correct this by giving the FDA the authority to regulate the manufacture, distribution, sale, labeling, advertising and promotion of tobacco products. In addition to being approved by two Congressional committees, this legislation has more than 200 cosponsors in the House and a majority of Senators as cosponsors. For the latest news on this legislation, please visit 8 STROKECONNECTION July August 2008

11 Staying Home Work is a challenge for those with depression and disability ost-stroke depression keeps nearly as many patients from returning to work as physical disability, researchers report in Stroke: Journal of the American Heart Association. In an Australian/New Zealand collaborative study that followed 210 men and women (average age 55) who had paying jobs in the month before their stroke, 55 percent returned to work within six months. That s comparable to rates in a U.S. hospital registry study in which 53 percent of patients had returned to work after a year. It can be quite heartening to families and clinicians that more than half of stroke patients go back to work, said lead author Nick Glozier, M.D., Ph.D., associate principal director of The George Institute for International Health in Sydney, Australia. But physicians should continually assess patients mood after stroke, because it s an important predictor of whether patients will go back to work. Researchers noted stroke is often considered a disease related to aging and measured in terms of fatality and dependency, but the social impact is often overlooked. In high-income nations, about 20 percent of strokes occur in people young enough to still be in the workforce. A striking number of people have strokes when they are of working age, and returning to employment is vital to their well-being and to their role in society. Since younger adults have responsibilities for generating an income and supporting family members, returning to work is a key goal in recovery, he said. The strongest predictor of not returning to work was physical disability. A week following their strokes, patients were assessed on the ability to independently perform basic self-care and daily living activities. Of those working at six months, 71 percent had been rated independent on that test. In contrast, of those who did not return to work, only 32 percent had been rated independent. A month after the patients had a stroke, nurses assessed their psychological symptoms with a tool widely used to screen for post-stroke depression and psychological distress. Of those working six months after stroke, 33 percent had post-stroke depression, compared with 45 percent of those who were not working. There is some evidence that antidepressants work in post-stroke depression, and there are indications that we may be able to prevent depression with psychological intervention, such as cognitive behavioral therapy-style motivational interviewing, Glozier said. If family members pick up on someone being depressed after a stroke, ask the physician to assess them and intervene if necessary, Glozier said. Post-stroke depression can be successfully treated, and treatment can help the patients, their families and society. Symptoms of Depression Persistent sad, anxious or empty mood Feelings of hopelessness, pessimism Feelings of guilt, worthlessness, helplessness Loss of interest or pleasure in hobbies and activities that were once enjoyed, including sex Decreased energy, fatigue, being slowed down Difficulty concentrating, remembering, making decisions Insomnia, early-morning awakening or oversleeping Appetite and/or weight changes Thoughts of death or suicide or suicide attempts Restlessness, irritability If you have five or more of these symptoms for longer than two weeks, depression may be the cause. Talk to a physician, psychiatrist or psychologist about treatment options. The most effective treatment combines medication with talking therapy. Editor s Note: For more information on post-stroke depression, visit July August 2008 STROKECONNECTION 9

12 READERS ROOM Connecting You to Others Going Back to the Fork in the Road hat happens to you after a stroke when you are an experienced, somewhat polished and vital person? You have a family and friends, and are viewed by those you interact with as a person with accomplishments. At first, your memory is sometimes fuzzy. You don t think of your memory as fuzzy, but others do. Some recover quickly and return to the life they led before the stroke. Some die. Some are paralyzed, wheelchair bound or recover only a little. Some simply give up. Family, friends and others may gather round and do their best to help you get better. In almost everyone s mind, you seek to return to your previous life. The word that everyone applies to this journey is rehabilitation. If you don t make a quick and dramatic recovery, people tend to write you off as someone who is not going to make it. But medicine is changing and cures seem more likely. Each stroke is different. Sometimes you reach a plateau, which may last an undetermined and possibly prolonged period of time. This plateau may seem like it is the end of recovery and your life is over. I am one of the lucky ones. First, I am lucky because my wife Carole took me to a hospital where a well-qualified surgeon dealt with my stroke. After surgery, I got off the table and slowly began the process of surviving. Second, I am lucky because I was never paralyzed. Third, I am lucky because my wife and friends, both new and old, have been extremely supportive and helpful. Fourth, I am lucky because I am stubborn and never stopped working to regain skills. Fifth, I was already used to setting goals and achieving them. I have learned to drive again, which gives me mobility. I went from wheelchair to walker to cane to walking without a cane. I read, watch TV and movies and participate in various activities. I keep up with what is going on in my profession. Most importantly, I recognized that I needed help and that recovery would be a long and difficult struggle. I sought help from professionals, people who cared and never gave up. For several years, I took a balance exercise class twice a week. I exercise regularly at the YMCA. For five years Carole and Richard Friedman I attended a speech therapy program at a local university where graduate student clinicians worked with me to improve my communication. Now I teach at that clinic and help others both in and out of class. Fortunately I have a voracious appetite for learning. I want to become a better person, recognizing that I must become a different person to do that. In a sense, I wanted to go back to the fork in the road and do what is generally considered impossible I wanted to take the road I had not taken. For me, the most important aspect of recovery is hope. Richard L. Friedman, Survivor Scotch Plains, New Jersey 10 STROKECONNECTION July August 2008

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14 READERS ROOM Connecting You to Others Not Feeling like a Survivor am 37 years old, and two months ago, I had a stroke, although it wasn t diagnosed for seven weeks. Until then, I was told I had labrynthitis, an inflammatory disorder of the inner ear. I was sent home with nausea pills and told it would take four to six weeks for the labrynthitis to resolve itself. When it didn t, I went to a neurologist who ordered an MRI and gave me the correct diagnosis a brain stem stroke. The stroke is so recent that I don t feel like a survivor yet; I ve not progressed enough to feel that way. My stroke left me with difficulty focusing my eyes, so reading is a challenge. My walk is unsteady. I can t drive due to vertigo and double vision. Each week I can do more than I could the week before, but I ll feel like a survivor when I ve recovered as much as I can and have learned to compensate for the rest. Now that I m experiencing life as a disabled person, I m getting a new sense of the attitude one must adopt to be happy and thriving. I m fortunate to have met some inspirational people throughout my life who have adjusted to their disabilities with grace and acceptance. I m coming to understand that this outlook is required for a survivor and not that unusual. Seriously, what can you do? Getting angry or detached will not bring my eyesight back, but being positive gives me a shot. I imagine myself walking normally, reading novels and driving a flashy sports car. I m with my son Jackson in the car, and I look great! I carry this picture with me every day. This is what I want. It s unnerving not to know if my abilities will come back. Will I drive again? Will I be able to walk with a regular gait or read without so much effort? I believe everything will return, so I push myself to read, to walk, to work through my fatigue. I bargain with the pain and temperature sensation. Not getting that back wouldn t be Now that I m experiencing life as a disabled person, I m getting a new sense of the attitude one must adopt to be happy and thriving. that big a deal; I ve already compensated for it. But I can tell that even that is slowly returning. I ve not felt depressed or frustrated with my losses. Maybe that will come. I feel more like a witness than a victim. When I tell people about my stroke, it s with an air of Can you believe it? One moment I was fine and the next, I was on the ground and couldn t see or walk anymore. I don t feel sorry for myself. I don t like other people feeling sorry for me either. The hardest part is that most of my disability is not visible. If I m sitting, people can t tell that I m disabled. Jackson has the hardest time with this. In his mind, since I look OK, I must be OK. He is 7 and has a hard time understanding Janet and Joe Mayer with son Jackson 12 STROKECONNECTION July August 2008

15 why I can t drive him somewhere or read to him. He constantly tells me that I m fine. I tell him that I m not, but that I will be some day. I sleep 12 to 15 hours a night. I don t believe it s due to depression, and what I ve read about fatigue and sleep being related to depression is just nonsense. It takes twice as much effort to read and walk and even think, so of course I m tired! It wears me out. If I sleep, not only am I better able to get through the day, but my symptoms decrease. Not that I d wish a stroke on anyone, but it would help if some of these researchers had this experience. My brain wants to do many things; I simply lack the energy to do them. When I have energy but am not motivated to be active, then you can talk to me about depression. Believe me when I say I need more sleep. I m honestly not withdrawing from anything. I work as an educational technologist for a state college. My employer has let me reduce my hours, and all my co-workers have supported me by filling in and taking over duties I can t do for the time being. They seem genuinely happy to help out. Because of my vision, I ve adjusted the cursor and text size on my computer. I don t turn on the fluorescent lights in the office they just feel weird, like that light isn t made for people. My husband Joe does most of the shopping, cooking, cleaning and appointments for Jackson. Basically, he does everything I used to do plus all his obligations, and he does it with a smile, as if he s lucky to have me to take care of. My sister sends me a surprise in the mail every week. My friend Tracy drives me to work and back home. My sister-in-law brings food over once in awhile. And friends and neighbors help with rides and watch Jackson when I have an appointment. Many people have offered to give me rides. I swear that sleep and support are going to heal me more than anything a pharmaceutical company can sell me. I m young. I don t have a problem with blood pressure. My cholesterol is good. My heart is healthy, and I eat a healthy diet. I m not overweight, and I exercise at least twice a week. I lead a very active lifestyle of riding bikes, hiking and walking all over campus for my job. No one in my family has ever had a stroke. Yet, here I sit writing about mine. I was not at risk, but young, healthy people who take care of their bodies have strokes, too. Now I m happy to have a definitive diagnosis so I can move on to becoming a survivor. Janet Mayer, Survivor Cassadaga, New York If You Don t Like How Your Story Reads, Change It Many times in the past, I have had dreams that weren t to my liking nightmares, we call them. Somehow, each time I realized that this was a dream in my mind, and therefore, I had complete control over it. After this realization, I simply changed the direction of the dream to suit me. This has worked wonderfully on many nights to calm my troubled mind. In June 1999, a massive cerebral hemorrhage placed my wife Charlotte and me in a nightmare that has not been quite so easy to resolve. Eight years of recovery have David and Charlotte Layton proven that my method for dealing with nightmares doesn t always work in real life. No matter how hard I try to change this nightmare, it is still here every morning to remind me how I neglected my good health when I had it. Thirty years of cigarette smoking combined with a diet high in salt and saturated fat was equivalent to walking across an open field in a thunderstorm carrying a lightning rod and crying, Hit me, Lord! However, after eight years of reading everything I could about strokes, health and wellness, I now realize it is not too late for me to rewrite my story. Unlike my nightmares, I may not be able to change my health status to the point of full usage of this paralyzed left side, but I am convinced that through daily exercise and proper nutrition, I can improve some of my losses. I know this works for me because of the strength and stamina I have already regained. The best time for me to have improved my health and built my strength was 20 years ago. The next best time is right now! Good luck in rewriting your story. David Layton, Survivor Summerfield, North Carolina July August 2008 STROKECONNECTION 13

16 READERS ROOM Connecting You to Others Friends We Have Not Yet Met y husband Douglas and I have always been fond of traveling and had planned our retirement so we would be able to go wherever we wanted, whenever we wanted. However, fate threw us a curveball in the form of my experiencing a severe stroke in September 2002, the very same year Douglas retired. It was as if to say, Plans change, deal with it! And deal with it we did with the hospitalization, the therapies, the ups and downs, the why us moments, the I don t want to live like this moments and the realization that I would have to live like this moments. With that being the case, we decided we might as well try some traveling. We started with local trips in the car, graduating to trips involving air travel, and finally this past year a 10-night western European trip starting and ending in Amsterdam. In April 2007 we took a Viking River Tulips and Windmills river cruise through Holland and Belgium, figuring that part of the world might be more accessible for handicapped travelers. During one of the bus tours as I entered the bus, this wonderfully kind lady got up from the front seat where she had been sitting and said she had saved it for Douglas and me so I wouldn t have to work my way down the aisle and struggle into the more difficult seats. From that day on, none of the other passengers sat in those seats. Mary Lou and Douglas Puls vacationing in Holland I was very touched by this act of kindness and will never forget it. When my husband was pushing my wheelchair on a couple of the walking tours, other members of our tour offered to push the chair. He declined most of the time as we prefer to stay as independent as possible, but it was another sign of caring and kindness from strangers. It was so touching. I ve heard somewhere that there are no such things as strangers, only friends we have not yet met. I do believe this to be the case! So I want to say thank you to all our wonderful shipmates. Mary Lou Puls, Survivor Nashua, New Hampshire Thanks, Honey! Billiette and Walt Pitz While waiting in the doctor s office the other day, I got to thinking about Billiette, my wife and caregiver. I was there to have a cancer on my nose removed. Here she waited beside me, uncomplaining. I had a 7:30 a.m. appointment, she didn t. I would get relief; she would just waste a morning. Public transportation and my driving restrictions resulted in me being driven right to the door at the doctor s office; she had to find a parking place a block away. Oral instructions for care had to be repeated to her in case I overlooked something. Fortunately I couldn t see the cancer, but she had to not a pretty sight! The doctor will be well paid if not by my insurance company, then by me. My wife-nurse-cook-chauffercaregiver will get a thanks. At least I know she will get her reward in the next world. Thanks, Honey! XOXOX Walt Pitz, Survivor Beaverton, Oregon 14 STROKECONNECTION July August 2008

17 Has Your Stroke Left You with Limited Use of Your Arm and Hand? SaeboFlex Patented SaeboStretch Patent Pending The SaeboFlex allows stroke survivors to use their affected hand in therapy and at home to relearn grasp and release. Leaders in Stroke Rehabilitation To learn more, visit our web site at or call Give Your Hand the Best Chance for Recovery If you ve suffered a stroke or brain injury and are frustrated by the limited use of your affected hand and arm, then the SaeboFlex and SaeboStretch might be your key to a better life. With Saebo, there is no plateau in sight!

18 FEATURE STORY New Developments in Rehab by Jon Caswell europlasticity is a big word for a revolutionary concept the brain s ability to reorganize and rewire itself. For stroke survivors, neuroplasticity is the beginning of a whole new paradigm of recovery. Where once the six-month window of recovery was the gospel of rehab, in the future the prime directive will be stimulating neuroplasticity, according to a leading researcher in the field. 16 STROKECONNECTION July August 2008

19 New Developments in Rehab Neuroplasticity, or brain plasticity, is the natural rewiring of brain cells in response to the environment and experience, including therapy, said Dr. James Stinear, director of the Neuralplasticity Laboratory at the Rehabilitation Institute of Chicago (RIC). Examples are learning to play piano, or learning to walk again following stroke. Without neuroplasticity, recovery of movement would not be possible following stroke. There are two types of brain plasticity. In physiological plasticity, existing brain cells change how they communicate. In anatomical plasticity, established nerve cells grow new fibers that transmit signals or completely new nerve cells develop. Nerve cells communicate by neurotransmitters, organic chemicals made by the body that pass across the microscopic gaps between cells (synapses). The connection between brain cells can be strengthened by increasing the amount of neurotransmitter passing between them. This physiological plasticity can form very rapidly, but it may not persist, said Dr. Stinear, who is also research assistant professor in the Department of Physical Medicine and Rehabilitation at the Feinberg School of Medicine at Northwestern University in Chicago. At the cellular level, millions of existing connections among cells communicate in a specific pattern. Some connections are strong and some are weak. The connectivity pattern can change due to an experience or injury, making previously weak connections strong or strong ones weak, Dr. Stinear said. Dr. James Stinear That change in connectivity results in a different pattern of movement. That change is likely to persist, providing we keep practicing the new movement. Old dogs can learn new tricks; so can injured brains. And practice appears to be the key to turning on the brain s plasticity, although the potential is there as long as we are alive. Just as repetition is the key to a healthy person learning a new motor skill, repetition is also important for stroke survivors, Dr. Stinear said. Repetitive movement can induce plasticity even when the movement is passive, as when a therapist moves a patient s arm. It appears the feedback from the moving limb to the brain promotes plasticity. If therapy produces a small recovery of a particular movement, the survivor Old dogs can learn new tricks; so can injured brains. And practice appears to be the key to turning on the brain s plasticity. should conduct mass practice of that movement, building it into a useful movement sequence. Scientists are attempting to harness the brain s ability to rewire itself. Let s look at a few advances in rehab that take advantage of the brain s plasticity. Therapeutic Thinking Stroke survivors often complain about the cost of rehab, and insurance is increasingly denying claims for needed therapies. Dr. Stephen Page, associate professor in the Departments of Rehabilitation Sciences and Physical Medicine & Rehabilitation at the University of Cincinnati Academic Medical Center, has developed and tested a low-cost, low-tech way of enhancing neuroplasticity and stroke recovery. It s called mental practice, and if you can think, you can do it. It s well-known that when you mentally practice a movement, you fire the same muscles as if you were actually doing that task, Dr. Page said. We now know that the areas of the brain controlling that movement also fire as if you re performing the skill. Mental practice involves mentally rehearsing a specific movement in sensory-rich detail. World-class athletes commonly use this kind of mental rehearsal to enhance their performance in competition. In Dr. Page s most recent experiment, two groups of survivors received 30 minutes of therapy twice a week for six weeks. Following the sessions, the control group got 30 minutes of guided relaxation, while the experimental group received 30 minutes of mental practice. A taped voice led the subjects through five minutes of relaxation followed by suggestions for internal, cognitive images: Survivors mentally rehearsed the motor skill practiced during therapy that day. For example, when mentally practicing reaching for a cup, there was a sensory-rich description of the setting, say the kitchen or a restaurant. Then the survivor was taken through the visual image of reaching for the cup from a first-person perspective, as well as the associated sensations: the feeling of extending the elbow and fingers, the texture and weight of the cup. Each task was mentally practiced several times, July August 2008 STROKECONNECTION 17

20 New Developments in Rehab lasting a total of minutes. The final minutes of the tape allowed patients to refocus into the room. Dr. Page observed dramatic differences between the two groups. Survivors receiving mental practice showed significant reductions in affected arm impairment as well as increases in daily arm function. People who had only a little wrist movement at the beginning could grasp a spoon or a cup by the end, Dr. Page said. At the International Stroke Conference we also showed that this type of mental practice also affects neuroplasticity. We obtained before-andafter neuroimages of participants brains, and, after mental practice, the brains were really lit up. Usually these new activations occurred in new places where there was initially little to no brain activity. Mental practice can also act as a bridge to modified constraint-induced movement therapy (mcit), a reimbursable outpatient therapy developed by Page and his colleagues that requires some initial movement in the wrist and fingers. The combination of participating in mental practice, followed by mcit, allows patients to make even greater gains than they would with mental practice alone. Mental practice offers It s well-known that when you mentally practice a movement, you fire the same muscles as if you were actually doing that task. the potential to produce more opportunities for the brain to rewire and, thus, more physical changes to occur, Dr. Page said. Moreover, survivors can try it on their own at home without special equipment. And some mental practice of a task has been shown to be better than no practice of any kind. Occupational therapists trained to break down tasks into small movements may be able to help work out the descriptions for a mental practice tape or CD that describes a movement from start to finish. For optimal results, however, Page suggested that patients and clinicians consider working with a psychologist trained in mental practice. Remodeling the Brain Constraint-induced movement therapy (CIMT) is arguably the most revolutionary advance in stroke recovery in a hundred years. Since 1993, when Dr. Edward Taub of the University of Alabama Birmingham proved that stroke survivors could improve arm and hand function by constraining their unaffected arm and performing mass practice of movement with their affected hand or arm, CIMT has become much more widely available. The great news for survivors is that it s effective with those who have Constraint-induced movement therapy (CIMT) is arguably the most revolutionary advance in stroke recovery in a hundred years. Dr. Edward Taub and research assistant Lynne Gauthier had strokes years before, which disproves the six-month window of opportunity rule. Now Dr. Taub and researcher Lynne Gauthier have used neuroimaging to show that there are structural changes to the brains of survivors using CIMT. Prior research has demonstrated functional changes to the brain from CIMT, said Gauthier, a graduate student in psychology, specializing in neuroimaging. By functional, I mean increases in blood flow or cortical excitability, which can fluctuate on a moment-to-moment basis. Our study is the first to show changes in the structure of the brain as a result of rehab, and these changes occur on both sides of the brain. This may be evidence that the brain is reorganizing itself to meet the demands of the environment. Two different treatments were administered to determine which aspects of CIMT promoted changes to the brain. Although both groups got the same amount of physical therapy in the laboratory (three hours a day for 10 days), one group was told to continue using their affected arm at home for everything. We almost nagged that group, Gauthier said. What we found was that the changes in grey matter we observed are proportional to the amount and quality of the survivor s arm use at home. In other words, those using their weaker arms to do activities of daily living at home not only showed better quality of movement, they also showed the biggest changes in the brain. People are essentially changing their brains by complying with their therapy. The next step is to investigate how to increase those changes. 18 STROKECONNECTION July August 2008

Brain Injury Association National Help Line: 1-800-444-6443 Brain Injury Association Web site: www.biausa.org Centers for Disease Control and

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