Peer Visiting When ‘been there, done that’ is a job description
• On the High Road with Gary Hyink • How To Beat a Stroke • Moving On Together — the Difference a Group Makes contentsnts January/February 2007
Feature Story Been There, Done That — Sharing Your Wealth 18 Peer visitors may be a reliable guide when you’re navigating the unknown.
On the High Road with Gary Hyink 16 Gary Hyink’s life journey has been all over the map, but along the way he’s made God his tour guide. How To Beat a Stroke 24 Survivor Laura Wisner shares a few simple rules that have made a difference in her emotional recovery. 18 Moving On Together — the Difference a Group Makes 28 16 24 A post-stroke exercise group in Connecticut helps enhance ongoing recovery.
Departments Letters to the Editor 4 Stroke Notes 6 Readers Room 12 Life at the Curb 27 Everyday Survival 30
Produced and distributed in cooperation Stroke Connection Magazine is underwritten with Vitality Communications in part by Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership, makers of Plavix.
a division of
Staff and Consultants: Jon Caswell, Lead Editor Copyright 2007 American Heart Association ISSN 1047-014X Jim Batts, Writer Stroke Connection Magazine is published six times a year by the American Dennis Milne, Vice President, Stroke Association, a division of the American Heart Association. Material American Stroke Association Mike Mills, Writer may be reproduced only with appropriate acknowledgment of the source and written per mission from the American Heart Association. Please Wendy Segrest, Director, American Pierce Goetz, Art Director address inquiries to the Editor-in-Chief. Stroke Association Operations The information contained in this publication is provided by the Michelle Neighbors, American Stroke Association as a resource. The services or products Debi McGill, Editor-in-Chief Advertising Sales listed are not owned or provided by the American Stroke Association. Additionally, the products or services have not been evaluated and their listing should not be construed as a recommendation or endorsement of 1-888-4STROKE (1-888-478-7653) StrokeAssociation.org these products or services. YOUYOU DON’TDON’T WANTWANT ANOTHERANOTHER HEARTHEART ATTACK ATTACK OROR ANOTHERANOTHER STROKESTROKE TOTO SNEAKSNEAK UP UP ONON YOU.YOU.
WITHOUT PLAVIX WITH PLAVIX
PLAVIX HELPS KEEP BLOOD PLATELETS FROM STICKING TOGETHER AND FORMING CLOTS, WHICH HELPS PROTECT YOU FROM ANOTHER HEART ATTACK OR STROKE. If you’ve had a heart attack or stroke, the last thing you need is another one sneaking up on you. PLAVIX may help. PLAVIX is a prescription medication for people who have had a recent heart attack or recent stroke, or who have poor circulation in the legs, causing pain TALK TO YOUR DOCTOR ABOUT PLAVIX. (peripheral artery disease). For more information, visit www.plavix.com or call PLAVIX OFFERS PROTECTION. 1-888-355-1152 PLAVIX is proven to help keep blood platelets from sticking together and forming clots, which helps keep your blood flowing.This can help protect you from another heart attack or stroke. IMPORTANT INFORMATION: If you have a stomach ulcer or other condition that causes bleeding, you shouldn't use Plavix.When taking Plavix alone or with PROVEN TO HELP PROTECT FROM some medicines including aspirin, the risk of bleeding ANOTHER HEART ATTACK OR STROKE may increase.To minimize this risk, talk to your doctor before taking aspirin or other medicines with Plavix. Additional rare but serious side effects could occur.
© 2006 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership. US.CLO.06.12.002/December 2006 B1-K0263-12-06 sanofi-aventis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A pair of curling shoes Pam has right-side paralysis, includes one slippery shoe, and you can request which including drop foot and shoe you want slippery. We used to make our own aphasia. She manages to walk curling shoes by gluing a piece of thin linoleum onto on her own with the aid of a the bottom of the shoe. Good luck, hope this helps, I leg brace and cane, although have the same problem. she’s somewhat unstable. Her right arm and hand are Rodger Sparks, Survivor • Canada completely non-functional. I regularly search the Internet for new rehab methodologies or treatments. As such I read “Winds of Change” (July/August 2006) with a great deal of My husband Johnny’s severe stroke interest, especially the references to clinical trials and three years ago left him with limited use of his right the positive results. I have found several Web sites leg, no use of his right arm, basically speechless and listing ongoing or upcoming trials, but there is virtually unable to write or remember his ABCs. no contact information and little detail. In many cases Many times I thought of stopping delivery of subjects have been selected before the information is Stroke Connection because all the stories seemed to made available. contain magical recoveries, then the August issue Is there a place, organization or Web site where she fi nally had realistic letters. can be listed as a volunteer for any applicable trials so A. Culbertson is right-on about money making that a researcher could get in touch with us? a difference. I’m sure there are many people who simply can’t afford treatments that would help. I also Walter James, Caregiver • Tallulah, Louisiana believe that where you live makes a difference: We live in a small, rural community with no close rehab. Editor’s Note: We have been unable to fi nd a central He is 58 and I am 56 and must work for insurance listing for people who want to volunteer for trials. because Medicare is not accepted by many doctors. I However, www.stroketrials.org carries a comprehensive leave him alone a lot, which is scary because he has listing of most of the trials involving stroke patients. a seizure disorder, but caregivers are expensive and In the left-hand column, click “Recovery Trials.” adult day care is 30 minutes away. On a recent visit to the site we found several trials I think your magazine should concentrate more on that were recruiting participants. Trials can also be the reality of most stroke families. If you don’t have found on the National Institutes of Health site, www. a computer, information is hard to get as most places clinicaltrials.gov. Click on “focused search,” then enter you call are closed when I get home from work. “stroke” in the “disease or condition” line, and enter Nancy Phillips should try Dexter or Eastland “rehabilitation” in the “experimental treatment” line. shoes. They are made in the U.S. and usually have You can fi nd more letters to the editor at leather soles. Jan Neels should really investigate strokeassociation.org/strokeconnection. before having Botox. It didn’t help Johnny and cost $4,000 a shot. If anyone can tell me where to get an ankle brace WE WANT TO HEAR FROM YOU that doesn’t encompass the whole foot in plastic, I would love to know about it. mail: c/o Editor-in-Chief Stroke Connection Magazine Maxine Bryant, Caregiver • Huntsville, Arkansas 7272 Greenville Ave. Dallas, TX 75231 fax: 214-706-5231 e-mail: [email protected] Letters may be edited for length and scientifi c integrity. The opinions presented are those of the individual and do not refl ect those of the American Stroke Association. 4 January/February 2007 This is a response to Jan Neels’ question I had a stroke in the July/August issue about using Botox. My in May 2004 at age 52. husband had a stroke nine years ago. It affected his Fortunately, I was not left side, and he is unable to lower his arm, and his paralyzed but I had aphasia fi ngers and toes draw up from spasms. When this and short-term memory happens, it’s very painful to walk or touch his toes loss. I have done my best to or fi ngers. He has been taking Botox injections for overcome these disabilities fi ve years; every three months they use fi ve vials and have been successful for throughout his left side. They say it will take up to the most part. two weeks to see results, but my husband can tell In June 2005 I walked a difference in only three days on his fi ngers and a a marathon in Hawaii week on his toes. The bigger muscles take longer. We to benefi t the American Stroke Association. That seem to get the best results with a neurologist. The accomplishment was the thrill of a lifetime. benefi t seems to last longer if you exercise during the Although I continued to exercise and watch my three months. This is truly a godsend. blood pressure, I started having chest pains while exercising and walking long distances. I ignored the Linda Adkins, Caregiver • Chandler, Arizona pain in the hope it would go away. I was reading the May/June issue of Stroke Connection Magazine when I came upon this headline, “Know the Warning Signs of a Heart Attack” I have had chronic pain for eight [reprinted below]. It was a cold dose of reality for me. years and have tried every medication I can think of. I could no longer deny that I was having classic heart Recently my pulmonary specialist thought that taking attack symptoms. Xanax might help. I went directly to the emergency room, where they Well, this medication has been a blessing for me. told me I wasn’t having a heart attack but that I did It has caused this constant numb tingly feeling to be need to see a cardiologist. While doing a stress test almost bearable. in the doctor’s offi ce, I survived atrial fi brillation and Please keep the magazines coming. It is so ventricular tachycardia at the same time. Fortunately, I comforting to hear other people’s stories. They seem was in the right place. to make mine so insignifi cant. I was never paralyzed Tests showed I had 90 percent blockage in my or struck mute, and I can get around using a cane, right coronary artery and 50 percent blockage in my mostly because my dear husband does so much for left. The doctor recommended emergency quadruple me. God bless him and all the other caregivers for all bypass surgery. At the last minute he put a stent in their love and unselfi sh care. one of the arteries so that only three were replaced. After all that, I am very happy to be alive and grateful Mary Elliott, Survivor • Chattanooga, Tennessee for your magazine. Larry Miles, Survivor • Salem, Oregon The Warning Signs of Heart Attack: • Chest discomfort. Most heart attacks involve • Shortness of breath. May occur with or without discomfort in the center of the chest that lasts chest discomfort. more than a few minutes, or that goes away and • Other signs: These may include breaking out in a comes back. It can feel like uncomfortable pressure, cold sweat, nausea or lightheadedness. squeezing, fullness or pain. If you or someone you’re with has chest discomfort, • Discomfort in other areas of the upper body. especially with one or more of the other signs, don’t wait Symptoms can include pain or discomfort in one or longer than a few minutes (no more than 5) before calling both arms, the back, neck, jaw or stomach. for help. Call 9-1-1 ... Get to a hospital right away. January/February 2007 5 STROKE Connecting You to the World Severe lderly people with severe sleep apnea have more than twice the Sleep risk of ischemic stroke than elderly people with no or mild apnea, according to research reported in Apnea Stroke: Journal of the American Heart Association. E“This study provides more evidence that Raises severe sleep apnea represents an independent risk factor for stroke in the elderly population,” said Roberto Muñoz, M.D., lead author of the study Risk of and a neurologist at the Hospital de Navarra in Pamplona, Spain. Sleep apnea is characterized by episodes of Stroke breathing stoppages during sleep. Severe sleep apnea is emerging as an important risk marker for ischemic stroke. Researchers used data from 394 people (57 percent male, average age 77) who participated in the Vitoria Sleep Project in Vitoria, a small town in northern Spain. Researchers monitored patients’ breathing patterns overnight in a sleep study, then tracked medical events in the patients for six years, registering 20 ischemic strokes. People who suffered a stroke were more likely to be male and have more severe sleep apnea. Those with severe sleep apnea had a two-and-a-half times greater risk of suffering a stroke than patients with no apnea, mild apnea or moderate apnea. “Sleep apnea is two to three times more common in the elderly compared to middle-aged people. However, typical symptoms of sleep apnea, such as loud snoring or excessive daytime sleepiness, are ‘Snoring is the less prevalent in the elderly compared to middle- aged people,” Dr. Muñoz said. most important Researchers suggest apnea treatment be started if doctors fi nd a high rate of episodes of decreased warning sign for breathing or breathing interruption, particularly in patients with other cardiovascular risk factors. sleep apnea.’ “Snoring is the most important warning sign for sleep apnea,” Dr. Muñoz said. “People who live alone, which is common in the elderly, should be aware that excessive daytime sleepiness is another key risk factor.” 6 January/February 2007 STROKE Connecting You to the World Stroke May Cost U.S. $2.2 Trillion by 2050 nless Americans do more to lower their risk of stroke and improve stroke care, the nation will pay $2.2 trillion over the next 45 years to care Ufor people who suffer the most common form conditions are projected to become even more common in of stroke, a new University of Michigan study predicts. the future. A disproportionate share of the costs will fall upon The $2.2 trillion estimate includes the cost of African Americans and Latinos/Hispanics because of their ambulances and hospital stays, medications, nursing home tendency to suffer strokes at younger ages and get less- care, at-home care, doctor’s visits and lost earnings for adequate preventive care than others. In fact, stroke-related stroke survivors under age 65 (based on current median costs among people under age 65 account for about half of salaries for each ethnic group). Earnings of those over 65 the predicted total, which includes lost wages. weren’t included. The study, published in the journal Neurology and In all, the study found that the total direct and indirect funded by the National Institutes of Health, highlights the costs of stroke in the next 45 years will be $1.52 trillion importance of efforts to prevent future strokes in all ethnic for non-Hispanic whites, $313 billion for Latinos/ groups, but especially in young and middle-aged African Hispanics and $379 billion for African Americans. On a Americans and Latinos/Hispanics. per-capita basis across the whole population, a white The study’s authors say the $2.2 trillion estimate is stroke patient’s costs will average just under $16,000, extremely conservative because it is based on current rates while the cost for each Latino/Hispanic patient will be just of the conditions that increase the risk of stroke – such over $17,000 and the cost for each African-American as diabetes, cardiovascular disease and obesity. Such patient will be nearly $26,000. Lipitor Reduces Risk of Recurrent Stroke atients taking Lipitor® (atorvastatin calcium) who “This is important information for physicians because had a prior stroke reduced their chances of having patients who have had a stroke are at much greater risk for another stroke and major coronary event, such suffering another one, yet treatment options to reduce their P as heart attack, according to a report in The New risk are limited,” said Dr. Michael Welch, SPARCL investigator, England Journal of Medicine. The Stroke Prevention by neurologist and president of Rosalind Franklin University of Aggressive Reduction in Cholesterol Levels (SPARCL) trial Medicine & Science. “Patients taking Lipitor in this trial showed was the fi rst major study designed to examine the benefi ts a signifi cant reduction in stroke and coronary events. This is of lipid-lowering in stroke patients. Up to one in fi ve stroke impressive when you consider that a majority of patients in survivors has another stroke within fi ve years. the trial were already being treated with medications such as In SPARCL, 4,731 patients who had no history of heart blood-thinning and blood pressure-lowering medications that disease and had experienced a stroke or TIA within six are often given to reduce stroke risk.” months before enrolling in the trial were followed for an “Stroke is a fatal or debilitating condition that has signifi cant average of about fi ve years. Patients had mildly elevated impact on patients and their families, and reducing that risk is a cholesterol levels, and were treated with either the statin key priority in cardiovascular medicine,” said Dr. John LaRosa, drug Lipitor (80 mg) or placebo. In the trial, Lipitor was president and professor of medicine, SUNY Downstate Medical shown to reduce the risk of an additional stroke by 16 Center. “These results underscore the potential benefi t of percent and major coronary events, such as heart attack, intensive Lipitor therapy for stroke patients who may be at high cardiac death or resuscitated cardiac arrest, by 35 percent risk for an additional stroke even in the absence of previous compared to placebo. heart disease.” 8 January/February 2007 %PPMRJEZSVSJEFIXXIVRSRWYVKMGEPXVIEXQIRX JSVGSVVIGXMRKJSSXHVSTVEMWI]SYVJSSX *OUSPEVDJOH8BML"JEF ± B OFX USFBUNFOU PQUJPO GPS QFPQMF FYQFSJFODJOH GPPU ESPQ 6TJOH TPQIJTUJDBUFE TFOTPS UFDIOPMPHZ BOE 'VODUJPOBM &MFDUSJDBM 4UJNVMBUJPO '&4 8BML"JEFTUJNVMBUFTUIFNVTDMFTUIBU¿FYZPVSGPPUBUUIFBQQSPQSJBUFUJNFEVSJOHUIF XBMLJOHDZDMF IFMQJOHZPVXBMLNVDINPSFOBUVSBMMZBOEFG¾DJFOUMZ.PTUQBUJFOUTXJUI VQQFS NPUPS OFVSPOSFMBUFE GPPU ESPQ XIP USZ8BML"JEF FYQFSJFODF JNNFEJBUF BOE TVCTUBOUJBMJNQSPWFNFOUJOUIFJSXBMLJOHBCJMJUZ/POJOWBTJWFBOEFBTZUPVTFFWFSZ EBZ 8BML"JEFJODSFBTFTZPVSNPCJMJUZ TUBCJMJUZ DPO¾EFODFBOEJOEFQFOEFODF/PXZPVIBWFB CFUUFSXBZUPHFUBMFHVQPOGPPUESPQ 6IUYIWX]SYV*6))+YMHIXS*SSX(VST [[[[EPOEMHIGSQ ;%0/ -RRSZEXMZI2IYVSXVSRMGW%PP6MKLXW6IWIVZIH%PPXVEHIQEVOWERHVIKMWXIVIH XVEHIQEVOWEVIXLITVSTIVX]SJXLIMVVIWTIGXMZILSPHIVW -RHITIRHIRGI3RIWXITEXEXMQI STROKE Connecting You to the World You’re the Cure for Secondhand Smoke U.S. Surgeon General Dr. Richard Carmona issued a report this past summer entitled “The Health Consequences of Involuntary Exposure to Tobacco Smoke.” As he unveiled the research, he declared: “The debate is over. The science is clear. Secondhand smoke is not a mere annoyance but a serious health hazard.” Smoking has long been known to nearly double a person’s risk for the most common type of stroke. The Surgeon General’s report has now established that there is also no safe amount of secondhand smoke exposure. For the fi rst time, the report addressed cardiovascular diseases and found that secondhand smoke may increase someone’s risk of stroke. The American Heart Association and its division, the American Stroke Association, have been urging elected leaders to enact smoke-free policies in all communities to eliminate secondhand smoke from the workplace, restaurants, bars and other public places. Everyone has the right to breathe clean air, but more than 126 million non-smokers in the U.S. continue to be exposed to secondhand smoke. This includes hospitality workers who are currently forced to inhale secondhand smoke while trying to earn a living. To take action at the local, state or federal level, join You’re the Cure and advocate for policy change. Visit www.americanheart.org/yourethecure. For more information, visit www.americanheart.org/secondhandsmoke. 10 January/February 2007 Putting your house in order Please send to: American Stroke Association means more than cleaning it. Planned Giving Department 7272 Greenville Avenue My sister would always leave Dallas,TX 75231-4596 her house spic-and-span whenever she went away on c Please send me the free booklet Planning for Women. (CDA) a trip – “just in case” something happened. c Please put me in touch with an American Stroke Association Representative. (CDD) When she died, the house c I am considering a gift to the American Stroke was spotless, but her estate Association through my estate plan. (CDC) was a mess. c I have already included the American Stroke Association in my will/estate plan. (CDB) We couldn’t even find her will, to find out what her wishes were. Name Estate planning is critical to your own and Address your family’s future. We urge you to send for our free brochure Planning for Women. The American Stroke Association hopes City you will find this information helpful in State ZIP formulating ideas for your estate plan. Phone You can also call toll-free 888-227-5242, Birthdate E-mail visit us at americanheart.org/plannedgiving or e-mail us at [email protected]. 07GPGDA IAD SC 01/07 ©2006, American Heart Association. 10/06 KC0080 PARROT Software The 1st to offer In our 3rd Year! Thank you, Parrot! Computer Treatment for Aphasia 70 different computer treatment programs designed to help recover Speech, Reasoning, Memory, Vocabulary and Grammar after stroke. Our Aphasia Internet Subscription is our most comprehensive and economical solution. $24.95 per month No long-term commitment Call 800-727-7681 for a FREE TRIAL www.parrotsoftware.com January/February 2007 11 READERS Connecting You to Others Learning Lessons t will be a major feat if I complete My right arm and leg are on extended this. It’s as if there’s a committee vacations. They served me so well for 58 in my head, and each member years. We sure had some good times! I is telling me what to write! And wear a brace on my right leg. typing is another matter entirely: I POST-STROKE used to type 90 words/minute, but Isince my stroke I have to search for each At fi rst I was wheelchair-bound, then letter. My brother Richard does all my walker-bound, and now I’m getting around typing. But no one else can tell my story, pretty well. I have discovered time after time so here goes. that God gave His angels charge over me. I drive, grocery shop, shop-shop, cook PRE-STROKE and feed my dogs twice a day. I live with Before my stroke I enjoyed my 93-year-old mother. We are quite a rollerblading with my three dogs regularly, team! She lends an extra arm when I need playing tennis, snow skiing, scuba one. We are both stubborn and that gets diving, running, riding motorcycles and a little hairy sometimes. It’s been a life- participating in church. changing experience for both of us. For 12 years I did Web design for an oil About a year ago I was helping my company. Feeling the need for a change, I brother bathe one of my dogs. She got Jan Cleveland enrolled in barber college. When I fi nished startled, and because I was holding her by school a year later, I was waiting to take her collar, my hip was broken. That was my State Board exams when I got my next a setback! I’m glad to say that my hip is assignment, an opportunity to get to know doing fi ne. God more intimately. You might say it was For a year I’ve attended a weekly a medical altar call. aphasia support group. Being there reminds STROKE me I have so much to be thankful for. ‘The things I’m Many folks have trouble speaking at all. learning are I had an ischemic stroke in March 2003. I’d like for people to know my intellect The doctors didn’t give my family much is still intact, but expressing myself creates life’s important hope for my recovery. They also said I had a short circuit. We sure take things like a mass on my heart. speaking for granted. I never knew it took mysteries, and I know this stroke didn’t catch God by so much effort to construct a sentence. I’ve got a lot surprise. Knowing He allowed the stroke I also attend a stroke support group gave me something to work through. every month. It is so neat being around more to learn!’ Was He mad at me? I knew that wasn’t people who you can learn from, like how His nature! I took time in the hospital to to clean your nails with one hand using a grieve what I had lost, but since that time I toothpick. haven’t looked back. My new life is full of challenges and When the doctors did surgery, they obstacles. The occasional curb still trips me didn’t fi nd a mass. I have no doubt Dr. God up, and my wig goes fl ying, but if I had the had already operated on me. opportunity to go back to my rollerblades, I I can’t say enough about my family wouldn’t. The things I’m learning are life’s or the unsung heroes in my church who important mysteries, and I’ve got a lot faithfully cleaned my room, the bathroom more to learn! and took time to minister to me. I could not have made it without their help. Jan Cleveland, Survivor Dallas, Texas 12 January/February 2007 New Directions y love for music started at age 5 ‘I thank God for my ability to when I began playing the violin. At age 12, I started playing the trumpet. sketch and paint. You can do My dream was to play professionally in a band. By age 19 I was doing anything with God’s help and an that. Playing in a dance band was encouraging wife like mine.’ Mfun, but I didn’t like the hours. When my son Jimmy was killed in an automobile accident at age 17, I vowed to teach music to kids. With left eye and with little use of my right hand and arm – I my wife Marcia’s help, I went back to college at age 39 was right-handed for 69 years. The stroke’s most painful and four years later earned a teaching credential in music effect was not being able to speak. Because of my education. I taught music in junior high and high school aphasia, I can no longer tell Marcia that I love her in my in San Jose, Calif., for several years. I also taught in own voice. Fortunately, I am able to hear and understand Texas for a short time before I burned out. just fi ne. I was once an avid reader, but now I’m only After that, Marcia and I bought two retail businesses, able to read newspaper headlines and short paragraphs. and a few years later I had a heart attack. We sold the My biggest blessing is that I have a new “voice.” It is businesses, and about a year later I joined the staff of an electronic communication aid called “Pathfi nder.” It Family Life Ministries, a division of Campus Crusade for speaks what I program it to say on the keyboard made of Christ, in Little Rock, Ark. I worked in the development icons, the alphabet and punctuation. It also has the ability to predict words I’m trying to spell based on words I use often. Marcia says it’s a lifesaver. I always had a desire to have a model train layout, so I built one – even with sight in only one eye and a right arm and hand that don’t work so well. The owner of a hobby shop built the 4'x8' table and laid the HO scale track and wiring for me. Then I designed and built the landscaping, including mountains and a tunnel. Using kits, I made all the buildings. There’s also a cattle ranch. The town was just like where I grew up in California. I have always had a desire to develop my artistic ability to draw and paint. Two years ago, I started sketching with chalk and later with pencil. Now I sketch with colored pens. My favorite subjects are old barns and lighthouses. I entered my fi rst show this year and sold Richard Goodrich two of my artworks. I thank God for my ability to sketch and paint. department. One of my responsibilities was to develop You can do anything with God’s help and an relationships with the ministry’s donors. For seven years encouraging wife like mine. I was at home there, praying with people all over the country by telephone. Richard Goodrich, Survivor In fact, I was at my desk there when I had a massive Little Rock, Arkansas stroke six years ago. For eight days I remained in a coma in the ICU, where I was given a 50/50 chance of survival. With God and Marcia at my side, and the many prayers of my co-workers and contacts across the country, I began to heal. The stroke left me blind in my January/February 2007 13 READERS Connecting You to Others Rock of Gibraltar am a four-year ‘Would I stroke survivor. like my old We have a 33-foot motor home that life back? we take to Yuma, Certainly, but Ariz., each winter, andI the fi rst week of March 2002 I was organizing it for I am thankful Joan and Joe Goss our return home. I awoke for what I early one morning with an excruciating headache and woke my husband Joe because I could not fi nd the aspirin. He realized that something was seriously wrong because I was have regained, so confused. He took me to the emergency room, and a female neurologist immediately ordered a CT scan and shortly afterwards told me, “You have a brain tumor. Would you mainly with like to see?” I said, “Absolutely!” the help and As we walked to the imaging unit, she said she felt sure it was a meningioma (a benign, slow-growing tumor that grows on the membranes that cover and protect support of my the brain and spinal cord). After further tests, she referred me to the Mayo Clinics in Scottsdale and Phoenix. husband.’ The tumor was removed the following week, and when I was fi nally aware of my surroundings, I found that I had had a stroke instead. I was told I had spent several days in intensive care and had received two units of blood. The most upsetting thing was that I had double vision and no control of my left side. After two weeks I was allowed to fl y home to Utah, where I spent two more weeks in the hospital. The worst advice I received was not to do anything about the double vision or change my glasses for at least six months because “you’ll get used to it.” I have always been a voracious reader, and I was trying to read with one eye, so I gave them a rather explicit answer: “Bull….! In six months I’ll be insane!” So as soon as I was released from the hospital, we went to our eye doctor, who put prisms on my lenses. Now I’m reading two books a week again. Now, let me tell you the good things in my life: My tumor was benign, my face does not sag, and my speech has not been affected. Joe says the only problem with my speech is that I never stop talking. I talk to everyone I meet wherever I go. I feel that my brain function is as sharp as ever, and I can walk with a cane or walker – when I feel brave I can walk without either. I can bathe and dress myself, and I can drive my car. Would I like my old life back? Certainly, but I am thankful for what I have regained, mainly with the help and support of my husband, who still takes me to therapy three days a week. Without him I might have quit several times. He is my Rock of Gibraltar. Joan Goss, Survivor Ogden, Utah 14 January/February 2007 The Kitchen Sink ’ll admit it’s scary. We once had our sink back up so badly that garbage was coming up in our bathtub – bad stuff, nasty stuff. My wife Pearl and I always run hot water after using the garbage I disposal, and we never put lettuce or bones down the disposal. Once in a while we’ll put crushed ice or lemon peels in the disposal to keep it from getting too smelly. We do everything we can to keep the sink from clogging up, but it still happens. It’s a real bother. We put all the precautions in place, and it still happens. The clogging of the kitchen sink is a lot like a stroke. No one would think of spending their time sitting around the sink listening for signs of trouble, or bringing the TV into the kitchen along with the entertainment center. We don’t put the sink in the center of our lives and forget the real life we’re supposed to be living. And yet, after a stroke, either our own or one a loved one experiences, we want to rally around the stroke, make it the center of our life and put the life we should be living on hold. Pearl had to teach me to replace fear with caution, to put all the precautions in place and then just live our lives. Pearl has had two strokes, so she can say that. So I did as she said. Now stroke is only a part of our lives and not the center. Yes, it can still be scary. But only if I let it. Dan Rodriguez, Caregiver Dallas, Texas Pearl and Dan Rodriguez Heroes n December 1, 1998, I was a unit clerk at the In July 2000, I had another stroke, and this time I was Oklahoma University Hospital. I was working sent to rehab for a month. It was hell, but we made it 16-hour shifts, 40 hours in a weekend. About through. My husband James is my hero, and I tell him so. O7 p.m. I started having terrible pain in the right Most people would have quit, but not him. side of my head. I knew something was wrong and asked The last fi ve years have not been easy: Most of my the charge nurse if I could go to the ER. Unfortunately we friends are gone; I have memory problems – people see me had a code blue right then, and I was told to stay at my desk. and call me by name, but I don’t even know them. I have to During that time I could not think, remember, talk be careful what I eat because of my swallowing problem. I or swallow. James, my husband, showed up and knew am on disability because I can’t work, and I miss that. I do something was wrong, but it seemed to have passed after 20 a lot of sewing, embroidery, cross-stitch and crochet. My minutes. The next day I woke up unable to talk, walk or see grandbabies keep me going. We have seven and another one out of my right eye. My husband said the right side of my on the way. And I do a lot of praying. face drooped, and called the doctor. At the hospital, I had I am writing because I saw Dick Clark on his New Year’s all kinds of tests, including a CT scan and an MRI, which Eve show, ringing in 2006. I was so moved by his strength showed nothing. Fortunately, the swallowing test proved that and endurance to get in front of the whole world and show I had had a stroke, and I was sent home… without rehab. I his stuff. I have watched him my whole life, and I have was 37 years old. never been more proud of someone. He showed people For almost two years my family was my rehab. My everywhere that just because you’ve been knocked down oldest son, Bryan, taught me to write and read; my second doesn’t mean you have to stay down. I would like to tell him son, Jeffery, taught me to speak and count; and my daughter, that he is my second hero! Alisha, taught me to eat. James did my therapy and Teresa Switzer, Survivor everything else. Oklahoma City, Oklahoma January/February 2007 15 the High Road with Gary Hyink by Jim Batts Gary Hyink’s life journey Gary, an Air Force veteran, was 26 when he had the has been all over the stroke. He’s 45 now. His journey has led him from tiny map, ranging from the Ashford, Alabama, to Birmingham, where he met his proverbial “nine miles future wife at a church. Deborah calls him her “trophy of bad road” to his husband,” a title he proudly has embossed on one of his more recent “highway credit cards. to heaven.” Along the They live in New York City, where she is an way he’s made God his assistant professor of nephrology at Mount Sinai School tour guide and traveling of Medicine. companion and has taken “I’ve had many positive and negative experiences, biblical scriptures as his because of my stroke,” Gary says. In his walk by faith he roadmap. has chosen to emphasize the positive by writing poems Deborah and Gary Hyink He has needed the to encourage others in diffi cult circumstances. help to negotiate some serious road blocks and detours “The Bible says in the book of Proverbs that ‘poverty along the way. will come upon you like a bandit and scarcity like an “My stroke tossed me into poverty like an uncaring armed man,’” he said. “Well, that’s what happened to me lover who rejects you and totally devastates your and led me to write a poem called ‘Homeless.’” emotional world,” Gary wrote recently. “Not only was I impoverished by $42,000 in medical bills, but I became handicapped. I lost the use of my left arm and had brain damage that left me confused and epileptic. Homeless “I became homeless. I was forced to sell my blood My world fell apart the other day. for money, eat from food lines to survive, sleep at the A personal tragedy tore my world away. Salvation Army and seek medical care from the poor I was once so comfortable and secure. people’s hospital.” My life is now a constant blur. “I would call myself brain-damaged but intelligent,” Family times and days well spent he says. Several “A” grades he earned in college courses Are now replaced by cold, hard cement. he has taken for credit confi rm his self-evaluation. I never meant for it to be this way, However, the stress of trying to take more than one A personal tragedy tore my world away. course at a time triggered more seizures and ended his It’s kind of you to help me when you do. work toward a degree. Maybe you realize it could happen to you. 16 January/February 2007 Mankind’s Prayer “Being homeless was a painful blessing,” Gary said. “I met many So close in thought I wish to be wonderful, caring people I never With someone who can hear would have met otherwise. That’s how My heart’s sad cry, its silent weep, I met my wife. We met in a singles’ Caused from despair, I fear. class at Briarwood Presbyterian Church For life is often so hard to take, in Birmingham. We celebrated our It deals such a painful blow, 11th-year wedding anniversary Then no one is there with whom to share, March 11, 2006. No one who wants to know. “I see people every day on the street For everyone has their problems too, in the same situation I was in – homeless Enough gloom and despair of their own. and trying to survive as best as they can. They have no time for me to share I read that, ‘The Lord sends poverty and My thoughts I so want known. wealth; He humbles and He exalts. He I pray the day will quickly come, raises the poor from the dust and lifts the The day when I will see needy from the ash heap.’ It was worth The person who will always listen, all I went through to meet all the friends And with all their heart love me. I made along the way.” Gary says the poor and needy often aren’t a priority in our society. “The shame of it is that the homeless and poor are people just like you and me,” he said. “In today’s fast-paced world, it could happen to you tomorrow. Please think about this when you see someone in need. He or she probably didn’t choose to be that way.” Gary wrote another poem in 1980 (Mankind’s Prayer, at right) when he was in the Air Force and stationed in the Philippines. “A friend, Sharon, wrote me and touched my heart when she shared some personal struggles she was going through,” he said. He saw her struggles on a larger scale. People often tell Gary this poem is well-crafted, but depressing. “I think they miss the point,” Gary says. “One of the desires of our heart is to love and be loved. Naturally we look to other people to fulfi ll this desire. They often fail to meet our needs, and this has led to countless personal tragedies. “I believe that only God can perfectly fulfi ll this desire he has placed in us. I found from personal experience that he is always available to us in prayer. He’ll listen and answer them. He answered mine in mighty ways and continues to do so.” Gratitude is the appropriate response, Gary said, which led him to the third poem in Thank You Lord his trilogy (Thank You Lord, at right). Thank you, Lord, for your grace to me. Please help me in all that I do. Help me be who you would have me be, ‘Life is hard,’ so on my life’s purpose I may start. I need your guidance every day. Life is often so hard for me. Gary says.‘Hang in I often stumble or go the wrong way. Sometimes I’m blind and do not see, or speak the words you would have me say. there and Thank you Lord for your grace to me. Please help me in all that I do. Help me be who you would have me be, have faith.’ so I may praise you for all eternity. January/February 2007 17 FEATURE Been There, Done That. Sharing Your Wealth by Jon Caswell ealing with the unknown is never easy, but when you’ve lost the use of some part of your body or your speech or your brain, the unknown can get large and scary. That’s when you’d like to meet somebody who’s “been there and done that.” Of course, that’s the whole idea behind stroke support groups, but joining a support group often happens months after rehab. Given the opportunity, survivors can benefi t signifi cantly from support a lot earlier in the recovery process. 18 January/February 2007 “The Rehab Buddies help current patients know that someone understands That was physiatrist Dr. Cynthia Bennett’s thinking when she put together the Rehab Buddies program what they are going at Penrose-St. Francis Rehabilitation Center (PSF) in through and survived it and Colorado Springs, Colo. “During my training at another made a new life.” hospital, I noticed that there was a support group for spinal cord injury outpatients, but there was nothing for — Dr. Cynthia Bennett inpatients, and I thought patients needed that kind of support during the acute phase, too,” she said. “When I commander. “It was good for me because I tend to be came to PSF, that concept was in the back of my mind. impulsive and talkative, but the key is learning to listen We have quite a few people here who have had life- and get the patients to tell their stories.” changing illnesses or accidents. “As stroke survivors we feel imminently qualifi ed “I started asking patients who had successfully to talk to stroke patients,” said Jacqueline Henkel, age recovered to visit those patients. I asked former stroke 72 and a visitor at SDRI. “I always advise the patients patients to visit current stroke patients, and former spinal I see that strict adherence to therapy sessions is key to cord patients to visit current spinal cord patients. The recovery. I also tell them that a positive attitude and Rehab Buddies help current patients know that someone a sense of humor is equally important. I have often understands what they are going through and survived it thought, ‘Survival is easy, recovery is another matter.’” and made a new life.” Burley Vandergriff, age 75 and a retired fi ghter pilot, Parker Finch, a stroke patient at the San Diego was one of the original rehab buddies at PSF. Burley had Rehabilitation Institute (SDRI) at Alvarado Hospital in a stroke after his second quadruple bypass surgery three California, had had a similar impulse during his recovery. years ago. He, too, received hospital training regarding While he was still in rehab, he told his therapists that privacy and hospital rules. one day he was going to come back and talk to patients himself because he thought it would have been valuable for him. A phone call to the local chapter of the American Stroke Association led to contact with a survivor in Las Vegas who had developed a survivor-to-survivor visiting program that had gone dormant. Working with Parker, Mary Williams, a recreational therapist and Laura Nelson, an occupational therapist, put together a 30-hour training program. “We had different professionals come in and present,” Mary Williams said. “A neurologist talked about the medical part. A speech therapist talked about the cognitive aspects, a social worker provided training on listening skills. Another social worker discussed depression and suicide. This was in addition to the Stroke survivor Parker Finch sharing with survivor Gertrude McMarion regular training in HIPAA and hospital rules that all our “I’ve had 16 or 17 buddies,” he said. “I start with volunteers receive. them while they’re still in rehab, and then I keep track “After they went through all that,” she said, “we did a of them when they go home or to another facility. I still lot of role-playing exercises about what the visit should have contact with all of them. In fact, I’ve recruited four look like.” of them to be rehab buddies themselves.” After all the training was over, some of the survivors Like Burley, Cathy Mundy, age 62, has been part decided that they weren’t comfortable doing it and of the Rehab Buddies program since it was started in dropped out. Unlike PSF’s Rehab Buddies, SDRI’s peer November 2004. After her stroke she was in the hospital visitor program is only for stroke patients. for over two months and has been in therapy ever since. “I think the most important part of the training She has regained use of her right side, though she had to was the listening skills,” said Finch, a retired Navy give up her job as a research librarian. (continued) January/February 2007 19 FEATURE “Our visits aren’t scripted; we simply relate our stroke experience and talk about the importance of physical, occupational and speech therapy as well as the impact of a positive attitude in recovery.” — Dick Goranson aren’t scripted; we simply relate our stroke experience and talk about the importance of physical, occupational and speech therapy, as well as the impact of a positive attitude in recovery. We never say ‘stroke victim.’ Victims are deceased; we use the term ‘stroke survivor.’” The ATSA team consists of four visitors who went through hospital volunteer training. Each member of the three groups has hospital identifi cation that allows them to visit the hospital at other than visiting hours. And in each case the hospitals Peer visitor Dick Goranson visits with Hazel Erdmann are quite supportive of the programs. “I didn’t have to do much selling,” Dick said. “I went to the hospital board and “All the training for Rehab Buddies takes about three the rehab nurses, and they welcomed it with open arms.” months,” Cathy said. “There’s hospital training – HIPAA At PSF, the response was much the same when and patient safety and fi re safety – which we’re tested Dr. Bennett proposed Rehab Buddies. “The board on. There’s also a tuberculosis test. Then we learned was enthusiastic. They understood how extensive our active listening and did role playing, and new buddies training was.” shadow experienced buddies. Talking to someone who has been through what they “We learn good ways to say things and things never are going through helps stroke patients in a couple of to say. For example, you never say, ‘I know you’ll get ways. Not only do they get to see someone who has better’ because you don’t know that. One of my buddies recovered, but they get to vent their feelings to someone has had a very hard time of it and won’t ever go home. who really understands and isn’t “blowing sunshine in You learn to focus on them, and when we talk, we only their face,” as Burley Vandergriff put it. talk about our experience. And we never talk about Peer visits also religion. If the patient wants to talk about it, that’s provide another avenue fi ne, but I never talk about it. We also make ourselves for communication available to the families.” between patients and Dick Goranson, age 69, of Kennewick, Washington, the healthcare team. also wanted to help stroke survivors after his stroke “Patients say things to four years ago. He started their buddies that they his own peer visiting team won’t say to any of and called it the After the us,” said Dr. Bennett. Stroke Advocacy (ATSA) “For example, they team at Kaldec Hospital may tell the buddy that in Richmond, Wash. “Our they wish they had not ATSA team functions survived. A regular differently than a traditional volunteer or even a stroke support group,” family member, might Dick said. “We work with start to offer advice or patients while they’re in say, ‘Oh, it’s not that intermediate care or in rehab bad, don’t worry, you’ll in the hospital. Our visits walk out of here.’ Rehab buddy Burley Vandergriff Peer visitor Jacqueline Henkel 20 January/February 2007 ShareGivers™ – Making a Contribution ecause a stroke can be peer visitors are prepared devastating, survivors and to visit at community family caregivers have a need hospitals, rehabilitation Bfor someone to understand centers, nursing homes and their feelings of loss. They also have other facilities. Receiving a great need for someone to give information from others who them answers to practical daily living have experienced a stroke questions such as these: holds special value for new • Why am I so sad and emotional? stroke families. ShareGivers is really two • When will I stop feeling like a programs in one. burden to my family? The fi rst eight classes • Will I ever get over the grief and of the 12-week course anger I feel? address the needs of stroke families in general. • And what about the emptiness? ATSA volunteer Russ Wodehouse visits with They are a stand-alone The clumsiness? The forgetfulness? survivor Earlene Johnson stroke education course ShareGivers can help meet that need. that includes information about the visits made by volunteer peer visitors. The purpose of the ShareGivers peer causes and consequences of a stroke, Completion of all 12 classes prepares visitor program is to provide hope and resulting disabilities and the effect of visitors to become ambassadors for encouragement to stroke families while these disabilities on a person’s physical stroke family education and support and educating stroke families about what has and mental health, as well as lifestyle and provides a unique and extremely valuable happened to them. ShareGivers makes self-esteem. The material is intended to service to others. it possible for the American Stroke increase knowledge about stroke and, With the tools provided in the Association and its community partners at the same time, decrease anxiety, ShareGivers kit, local program sponsors to help families answer those questions loneliness and isolation. The psychosocial can help survivors gain a better and overcome the many challenges aspects of a stroke are also covered. understanding about stroke, self-care brought on by a stroke. Issues such as stress, emotional upheaval, strategies they can use to help in their A peer visitor who has personally self-esteem and intimacy are addressed. rehabilitation and how to help prevent experienced stroke and completed the The last four ShareGivers classes another stroke. The ShareGivers training ShareGivers training course is uniquely prepare stroke survivors and caregivers course is a structured group education qualifi ed to understand a new survivor’s to serve as volunteer peer visitors in program for survivors, caregivers, family concerns, frustrations and fears. The their community. This part of the training members and peer-visitor candidates. program teaches special listening skills course focuses on teaching peer visitors The course is facilitated by volunteers and trains visitors to offer encouragement to listen, share and learn together with who are healthcare professionals. based on their perspective as a fellow the survivors and caregivers they visit. For further information or to survivor or caregiver. Active listening skills are at the center order a ShareGivers training course, After mastering the use of these of all four classes, since listening is the call 1-888-478-7653 or visit www. skills and others taught in training, primary ingredient in all the successful StrokeAssociation.org/sharegivers. “Buddies are trained not to give false hope or medical course, no names or medical information are shared. advice. We train them to share information with the Said Parker Finch from SDRI, “At the monthly meetings physician or case manager if they are concerned. They we recap our visits from that month, and that is really tell us if someone is depressed, for instance. Patients helpful because it’s a lessons-learned session: Here are don’t always feel they can talk to doctors; they’re more the mistakes, and here’s what we did right. It’s a valuable comfortable sharing things with a buddy.” learning tool. The meetings also encourage a kind of Cathy Mundy agreed. “My buddies and I can talk team spirit.” about very personal things, like bladder control. They “We review the cases, and anything that other visitors want to know what I’ve tried that worked. I think this is can learn from is shared,” said Mary Williams, who a really valuable role for us to play.” coordinates the program at SDRI and leads the recap Both the SDRI peer visitors and the PSF Rehab meetings. “For instance, communicating with a patient Buddies have monthly meetings where they discuss who has aphasia. It’s important for peer visitors to learn the patients they worked with the previous month. Of how to do that. The visitors also continue to develop (continued) January/February 2007 21 FEATURE “We learn good ways to say things and things never to say. For example, you never say, ‘I know you’ll get better’ because you don’t know that.” — Cathy Mundy makes you feel better. There are just things you can’t tell the staff people because you just can’t explain it to someone who hasn’t been there.” “My rehab buddy was Cathy Mundy and she was wonderful,” said Betty Puckett, who had a stroke last June at age 73. “It was always encouraging to me because she’d been there. She had suffered with slow return of function, too. So many times you think you’re the only one. “I thought I held the record for days in rehab, but then I realized she’d been in longer than me. It was refreshing to talk to someone who understood. They can support you in a way that nobody else can.” Birdie Royal, age 62, is caregiver to her mother, Mickey Bohnet, age 83. She had a stroke almost 10 years ago. As her mother became increasingly diffi cult to deal with, SDRI put her in touch with Richard and Carol Hoyt, a husband and wife, stroke survivor and caregiver peer visiting team. “Their counseling has been invaluable to me,” Birdie said. “They advised me to step back and Rehab buddy Cathy Mundy, left, sharing with Betty Puckett not take it personally. their stroke expertise, and the meetings help them deliver “Carol has been a nurse for 30 years, and she helped their information better and better.” me see that Mother is beginning to have dementia and “We meet every month and talk on the phone that she most likely won’t get better. They said it was a regularly,” said Cathy Mundy from PSF, “but we don’t role reversal, that I have to treat Mom like you’d treat a really socialize, though we’re all pretty good friends. We stubborn child, fi rm but compassionate. like each other and we share a lot.” “When I was really down recently, Richard shared “Parker takes the tough-love approach with the a great analogy with me: What does the stewardess say patients he visits,” Mary Williams said. “When he talks when she’s giving instructions about the oxygen masks? to them about doing therapy, they listen. I can say the She says put it on yourself fi rst before helping someone same things, but the patients don’t take it as well.” else, even your child. I know it’s true, if I don’t take care “I tell them to do things for themselves,” Parker said. “Dependency is a dangerous trend. People don’t gain anything by having things done for them that they can do themselves.” Patients receiving these visits seem very appreciative. “Burley Vandergriff is my man,” said Mike Crimble, who had a stroke in November 2005. “He visited me in about the second week of rehab, and we matched lies for about an hour, swapped sea stories. He visited about every two weeks. “I know there are guys this stroke thing really tears up, especially the ones who can’t talk. It just devastates them. But I know someone like Burley just showing up Survivor Mickey Bohnet, left, with daughter and caregiver Birdie Royal 22 January/February 2007 of myself, then I can’t take care of Mom. Their counsel has really helped.” “Most of our patients are overwhelmed by how their lives have changed,” said Dr. Bennett of PSF. “Their rehab buddies allow them to look into the future. They begin to realize, ‘Yes, my life has changed, but lives change. It may be different than what I expected, but it’s still my life and I’ll get through it.’ Cathy Mundy “It’s also incredibly benefi cial for the buddy because it gives them a new purpose, a purpose that would not have occurred without their life-changing event. That allows them to make the most of it. I don’t know who benefi ts more; getting and receiving are so intertwined. It’s very exciting to watch. “I have a photograph of our fi rst buddy visit. The buddy is sitting on the window sill, and the patient, who’d had a severe, life-altering stroke, is riveted on him. They were just two guys sitting around talking. That is what it is all about, people talking. I can’t connect like that no matter how much time I spend with my patients.” “If you do not have a peer visitor program at your hospital,” survivor Dick Goranson said, “I urge you to +DYH\RX contact the hospital’s volunteer coordinator and start one. You have experienced stroke recovery, which DQG\RXU means you have a wealth of knowledge. Consider sharing your wealth with others who could really EURWKHU benefi t from what you have learned.” RUVLVWHU KDGDVWURNH" If so, you may be eligible to participate in this interesting clinical research trial! Researchers at the Mayo Clinic are looking for additional families to participate in the Siblings With Ischemic Stroke Study (SWISS). SWISS is a National Institutes of Health funded clinical study to discover inherited risk factors for stroke. There are nearly 50 centers enroll- ing participants across North America. To learn more about SWISS or to find a center near you to participate... Please contact Alexa Richie [email protected] More information is also available on the NIH site XXXDMJOJDBMUSJBMTHPW keywords ‘Sibling and Stroke’. January/February 2007 23 How To Beat a Stroke by Laura Wisner, Survivor Conyers, Georgia Laura Wisner, left, with her sister and caregiver Jane hen I awoke on the fi rst Friday in May 2001, I felt something was wrong. I sat on the side of my bed and gave serious thought to what was up and what was down. As I stood and started toward the bathroom, I was so dizzy I wasn’t sure whether I was standing erect or not. I didn’t turn loose of one wall until my hand was touching another wall. Slowly I made my way to my bathroom and there held onto the vanity for dear life. When I reached the mirror I looked at my refl ection and saw the right side of my mouth drooping. With a distinct slur I said, “Oh my God, I’ve had a stroke.” Things that happen at times like these are not funny at the time, but they can seem hilarious in retrospect. I usually splash water on my face to wake up, but that morning it went over my shoulder and onto the fl oor. I don’t know how I fi xed my daily medicine, but I did. The very fact that I’m still living is proof I did it correctly. Somehow I got my housecoat on and shuffl ed to the kitchen where my sister Jane was fi xing breakfast. “Hello, kiddo, how are you …” That’s as far as she got before she saw my face. I told her I was so dizzy I couldn’t tell up from down and asked 24 January/February 2007 her to please snap my housecoat because I couldn’t. She healthcare aide came and bathed me thoroughly, so snapped me up and told me to rest in my chair while she between pan and tub I was squeaky clean. Dressing took fi nished getting breakfast. stamina. Tying my shoes was very slow. “Maybe your head will be clearer,” she said, but we Two weeks after the stroke, therapists started coming both knew it wouldn’t. When everything was ready she to our home. For 10 weeks, three times a week, I had a asked if I was feeling better, and I told her I thought physical therapist helping me regain control of my right I’d had a stroke. She agreed and said she would call the side. She designed a program for me that wasn’t too doctor as soon as her offi ce opened. severe but worked all my muscles. I even used weights. During breakfast I had diffi culty swallowing. I At the same time, my speech therapist started to couldn’t handle my spoon and gagged on my coffee. I loosen my tongue. She was a jewel. She also had writing was slurring so badly that Jane couldn’t understand me for me to do since it’s all tied together. I quickly realized unless I spoke slowly. After breakfast I sat in my recliner that I would have to relearn how to write. I’m sure I and rested. looked like a second grader, tongue sticking out and all. That’s when I discovered that I couldn’t raise my foot My printing is almost back to normal, but my cursive is and Jane had to help me. By that point I was panicking. still terrible, though I keep working. I started crying and couldn’t stop: My mother had a You need to use a lot of different things fi ghting for massive stroke on a Saturday evening and died by 9 your recovery – and it is a fi ght. Here’s what worked o’clock Sunday morning. I had stayed with her at the for me: hospital and watched as she slipped away. 1. It has to come from within. YOU have to WANT Twice that May morning I slipped a little and it to make the effort. No one can do it for you. YOU frightened me so. I thought I would be like Mother have to do it. and continually slip. Thank God those little slips were all I had. 2. You need a sense of humor because you are going Jane took me to the emergency room per doctor’s to do things that make no sense at all. The fi rst instructions. After a thorough exam, they sent me home. reaction of most people to these little “gems” is That was Friday, and I was to see my doctor on Monday, to laugh, and if you don’t laugh fi rst, you’ll get so I just rested over the weekend. your feelings hurt. The quicker you can laugh at On Monday, my physician, Dr. Satterfi eld, examined yourself, the better off you’ll be. me and sent me to a neurologist. He tested me and 3. Don’t be afraid to ask your doctor for help in your checked my reports and told me I’d had a stroke. I just fi ght. I had a genuine problem with depression. looked at him, so he asked me if I understood what he’d My doctor gave me Sarafem to keep me from said. I nodded yes and in my very slurred speech told sliding down, and it helped tremendously. him I was coming back, that I wouldn’t let it defeat me. “That’s the attitude to have,” he said. 4. Pray. You’re not in this alone. You haven’t been From day one I insisted on trying to do things for forgotten. Fear of the unknown is real, so call on myself. If I couldn’t do something, I would be the fi rst to the Lord to strengthen you. Even if there are a lot admit it and let someone else do it. I was keenly aware of people praying for you, pray for yourself. of my limitations. (continued) Baths took forever, but at least I was clean. I had recently been in a cast for 10 weeks, so I was Laura outside the care facility accustomed to pan baths. Twice a week a home where she now lives 11You need a sense of humor because you are going to do things that make no sense at all. The quicker you can laugh at yourself, the better off you’ll be.11 January/February 2007 25 For quite a long time, I stayed focused on 4. Pray! Pray! Pray! Remember the hymn, “Be not strengthening my body and mind. People were very dismayed whate’er befall, God will take care of kind and did all they could to make me as cheerful as you.” He will be with you and hold you in His possible. I didn’t want to hear that I’d had a stroke. Call arms. Talk to Him, invite His healing power into it anything you want, but don’t call it a stroke. I called it your life. And remember this above all else: He “my little problem.” loves you! I learned not to make sudden turns. I learned to Editor’s Note: Stroke is a medical emergency. If you or someone move slowly, and that it’s best for me to have one hand you’re with has had a stroke, or if any of the warning signs start to anchored. I made the mistake of making a quick turn occur, get help immediately. Call 9-1-1. three weeks after my stroke and I fell. When I realized I was going down, I relaxed and let it happen, thinking it would do less harm that way. Wrong! I was too close to my recliner and hit my head and hurt my neck. Let’s consider my list of things to do after a stroke: 1. Look at yourself in the mirror and say, “I have had a stroke,” and get on with your recovery. The quicker you face it, the better you’ll be. 2. If you don’t have a sense of humor, develop one. You’re going to say and do things you can’t explain, so get used to it. 3. Ask for help. Your doctor won’t leave you stranded and will be more than willing to assist you. Laura at “work” 26 January/February 2007 Let’s Get Physical “Hi John, it’s Sally.” My normally cheery case manager sounded somber. She was calling to inform me that the insurance company felt I had reached my rehab limit. Basically they were ending my therapy the same way Porky Pig ends a cartoon: “Th, th, th, th, that’s all folks.” If I wanted to continue rehab for my left side, I’d have to pick up the tab myself. Robbing a bank crossed my mind, but I knew I’d be at a distinct disadvantage during the getaway. Suddenly I was thrust into a new phase in my recovery. I’m thinking positive – new faces, new places. I mentioned to a friend in PT that I joined a gym. “With normal people?” she asked. I winced at the word “normal.” Hey, I live in the heart of Greenwich Village, where a guy with a spiked orange Mohawk haircut and covered with tattoos and pierced body parts is considered normal. Life He may look like a Visigoth barbarian to me, but what do I know? In any case I wanted my fi rst day at the gym to go smoothly. I fi gured the treadmill would be a safe place to start. All the treadmills were in one large mirrored room, which gave the impression I was surrounded by thousands of at the them. It was like a bad ’50s horror movie, “Invasion of the Treadmills,” scored by ABBA. I stepped on one and spent 20 minutes staring at the control panel in bewilderment. Safe maybe, but simple it wasn’t. The thing was demanding. It kept asking me questions: “Choose your workout. Olympic training? curb Marathon? Hill climbing?” My answers were simple: Olympic training, no thanks. Marathon, not today. Comedian and stroke Hill climbing, probably never! All I wanted to do was walk. Finally I found a button I understood. It said START. I pushed it. The control panel lit up like survivor John Kawie’s fi reworks, and the belt slowly started to move. I discovered I had two speeds: unique perspective Stop and .001. There I was slowly walking, getting nowhere fast, but the feeling on stroke survival was amazing. It was truly a Zen experience. Man and machine are one. I was in that zone Michael Jordan always talks about. That’s when I went from stroke survivor to “Cool Treadmill Guy.” Just as I was reaching my peak performance with “Dancing Queen” blaring in the background, a pair of hot New York University students (think the Hilton sisters) wearing the latest spandex workout couture Paris and Nicky glanced over, and bounced on the treadmills to my left and right. Within seconds they were jogging so fast they made me feel I could tell they were wondering like I was standing still. what my problem was. My instincts Paris and Nicky glanced over, and I could tell they told me to ignore them, but “Cool were wondering what my problem was. My instincts told me to ignore them, but “Cool Treadmill Guy” Treadmill Guy” wouldn’t listen. wouldn’t listen, so he tried to punch up the speed. My hand slipped and hit the Olympic training button instead. I started to lose control. It felt like I was going to be launched to the other side of the room and splattered on a mirror like a bug on a windshield. All “Cool Treadmill Guy” cared about was looking bad in front of Paris and Nicky. I, on the other hand, was hoping I hadn’t thrown away Sally’s number. Editor’s Note: Read John’s personal stroke story, “Life is at the Curb,” from the September/ October 2003 issue of Stroke Connection at strokeassociation.org/strokeconnection, or book his one-man show about stroke recovery, “Brain Freeze,” by contacting him at [email protected]. January/February 2007 27 Moving On Together — the Difference a Group Makes by Lucy O’Neil group dynamics were a powerful catalyst for energizing bodies, minds and spirits to re-engage life. The program will soon be four years old. Here are a few of the stories of survivors who are courageously Moving On! Kathleen would not give her age, but she had her second stroke in 2005. She is a wife of 26 years, with two grown children, and is a retired teacher. I had an ischemic stroke in the basal ganglia in January 2005. I would never wish this on anyone – not patient nor caregiver. Even with all the support I’ve had, there have been some dark “they would be better off without me” moments. When I fi nished outpatient rehab, my therapist suggested Moving On as a way to continue therapy. The group environment My husband Bill participates in a post-stroke exercise is supportive, not condescending, and program designed by therapists at Lawrence & Memorial Hospital reinforces physical, occupational and speech in New London, Conn. They saw the need for a community-based therapy. No one is “blowing sunshine” at exercise class for stroke survivors after their discharge from you. The group reminded me constantly formal rehabilitation programs. that I was not a freak and could improve, I The therapists were frustrated at not having a good answer for had only to look to the left or right to see patients who commonly asked questions like, “Where do I go from that. Moving On offers opportunities for here?” and “How can I continue to exercise and enhance my recovery continuity of motivation, repetition and in my own community?” The slow pace of recovery experienced by intensity of therapy. It has been such a many survivors can be physically and emotionally draining and can worthwhile stepping-stone for me. result in debilitation, depression and disengagement from a valued life role. The therapists could not fi nd a program designed for stroke Ken Wydler, age 76, had a stroke survivors, so they created one. They called it “Moving On” and held in 2002. He is an accomplished their fi rst class in the spring of 2003. musician who helped the group The group met twice a week for 10 weeks and spent 90 minutes practicing skills needed for the activities of daily living and sing … in tune, no less! reentry into the community. Their exercises focused on strength, When I had my stroke in June 2002, I fl exibility, coordination, tone management, communication/ was encouraged to exercise and was given thinking and socialization. a lot of hope by very supportive medical After the fi rst eight-week session, both staff and survivors were staff. I grew closer to my wife of 48 years, pleased with the results. The members were not following in the and the family was a great support to me. common cycle of decline and debilitation after their release from Participating in Moving On has helped rehab. Instead, growth and positive changes were happening. The me do things physically that I could not do 28 January/February 2007 before – plus, it was fun! You have a chance Moving On has been very good for me, because I am with other to make friends and are encouraged by people who are disabled so I don’t feel so different. And I am now the progress of others who are in the same walking with a cane! boat. I believe in the plateau theory, but in a positive way: I’ve progressed from one stage Gary Gidman, age 55, had his stroke in July 2002. He for a while then to another and another. I is an accomplished and multitalented musician who has can now go to church every Sunday, visit worked as a guitarist, bassist, vocalist and composer. with family and friends, eat out often, go to I read about Moving On in a fl yer. I don’t recall having any Bible study, play with an ensemble group particular expectations but, generally speaking, the class encouraged once a month and study painting. I can’t social involvement and taught me many exercises, challenging my drive yet but hope to one day. skills in those areas. The program inspired me to give up my walker in favor of a cane, which improved my independence and mobility. Fred Serluca, age 84, had a As of today, I am involved with four different social workers and stroke in 2004. He taught the have started performing again. I’ve resumed amateur composition, group to make pizza and brings his and a band in the UK has recorded a song I co-wrote with a friend in own upbeat humor to the group 2005. It was broadcast on the BBC. every week. Before I had my stroke, I enjoyed a Leslie Clark Demlein, age 60, had a stroke in life of occasional cooking for my family, January 2004. She was a teacher for 32 years. playing golf, spending time with friends, After my stroke, I was near death so I don’t remember the fi rst traveling and reading. I’ve always been two weeks. As time passed by, the medical staff gave me so much outgoing and able not to take matters too hope that I expected to get well in a fl ash, yet that fl ash never seriously. happened. After my stroke, I was confused and I was introduced to Moving On by my therapist, but I didn’t bitter, but I then settled down and dealt know what to expect. However, the whole “gang” made it special with the situation. With rehabilitation for me. Some could talk, some couldn’t. Some were better off than and the support of my family, I began the others. I remember we all discussed the question, “How are you journey back to recovery. When I joined dealing with the rest of your life?” The only other female in the Moving On, I just wanted to continue group got up and spoke in sobs. Those kinds of things stay with me. rehab. The big difference for me has been I don’t believe in the plateau theory because it means my fi rst participating in group exercise as opposed year of recovery is all there is. I’m now in the second year of my to “one-on-one” rehabilitation, which can “strokedom.” I still have a bum right leg and arm plus I have aphasia become tiresome. and apraxia. I continue with speech therapy, but I am improving. The impact that this program has (continued on page 32) made on my life has been positive both The Moving On group at rest physically and emotionally. Setting goals and attaining them has been a part of my healing process, and I’m happy to say that I’ve had more “ups” than “downs,” and I hope to continue improving. David Bourne, age 79, had a stroke in 2003. He brings his love of the sea to the program. When I retired from my job in 1988, I enjoyed a life that included sailing, swimming, playing with my grandchildren and spending warm winters in Florida. I was devastated by my stroke. I couldn’t even sit up straight at fi rst, and even now life has limitations. My family life has changed forever. January/February 2007 29 EVERYDAY Connecting You to Helpful Ideas to dress is success by Mike Mills anaging life at home after a stroke can be a challenge for the survivor. Daily tasks that were once simple may now seem diffi cult or impossible. But by making adjustments, some survivors can once again manage those tasks, including dressing and undressing. Although how much help is required varies, reclaiming even a small portion of independence in dressing enhances survivors’ self-esteem. If you are a caregiver, encourage your survivor to dress every day instead of wearing pajamas. Being dressed for the day can promote a positive mood. Here are several tips to help the survivor learn to dress and undress: choosing clothing • Choose clothing that fastens down the front. Clothing that must be pulled over the head (undershirts, nightgowns, sweaters) may be diffi cult to manage. • Avoid tight-fi tting sleeves, armholes, pant legs and waistlines. • Knit fabric wrinkles less than woven fabric, requiring little or no ironing. • It is easier to pull slacks up and down over nylon underwear than over cotton. • Coats and jackets lined with smooth fabrics such as satin, silk and nylon are easier to put on than unlined garments. • Clothing may be easier to handle if it features elastic or Velcro fasteners, snaps, elastic waistbands and rings attached to zipper pulls. 30 January/February 2007 dressing and undressing (You may want to buy a size larger than normal. They go on easier. Or • When getting dressed, lay out buy thigh-high nylons that use an clothes in the order they will be put elastic band to hold them in place. on. Those to be put on fi rst go on Be sure the band is not too tight top of the pile. – you don’t want it to interfere with • Putting on clothes is easier when the blood fl ow to your legs.) sitting than when lying down. Getting socks and shoes • Always put clothing on the affected dressed every side fi rst. When undressing, always • Socks can be put on with one take clothes off the affected side last. day promotes hand, but if you need help putting • To put on blouses, jackets and self-esteem on socks, buy a sock stretcher. cardigan sweaters, lay the garment Using a larger sock also helps. on a fl at surface with the collar and a positive • Socks will go on easier if you furthest away from you and the sprinkle a little cornstarch on the back side of the garment facing attitude. bottom of your feet fi rst. the ceiling. Bend over and put your • Wear shoes or slippers that fi t arms into the armholes and lift the • Sports bras give different levels snugly. Don’t walk around in garment up and over your head. of support with full freedom of stocking feet. • To remove blouses, jackets and movement, and are often T-back • Several products are available sweaters, unbutton and ease or racer back. They are often put for tying shoes, including elastic garment off shoulders. Reach on over the head or over the feet shoelaces. behind your back and gently tug and legs and pulled upwards, but • Have a shoe repair shop alter the the garment off. If your balance is are also available with front- and shoes by installing Velcro closures. unsteady, sit on the edge of the back-fastening. • If using a brace, put the brace in bed or on a chair to put on your • Dress in front of a mirror. It will help the shoe fi rst. Pick up the shoe clothing. you fi nd the sleeves and match up by the toe and lay it down on the • To avoid getting buttons in the buttons with buttonholes. back of the brace. Step into the wrong holes, begin with the ones • Allow plenty of time for dressing. trough of the brace and slide the at the bottom that you can see and foot forward into the shoe. Hold work from there to the top. • Ask for help. If necessary, a caregiver or family member should the tongue out of the way. • If your arms are weak, rest your be able and willing to help. • Use a long-handle shoehorn. elbows on a table, chest of • Use a reacher, buttonhook or drawers or chair armrests while dressing stick for putting on clothing belts and pants fastening buttons. and reaching items in a closet. • Put the belt on the skirt, slacks or • If you are a woman who doesn’t dress before putting it on. have a bra that hooks in front, putting on pantyhose consider getting one. (Front- • Rather than trying to pull pants on • While seated, cross the affected fastening bras are available up holding the waist in weak fi ngers, leg over the unaffected leg. Gather to sizes E and F.) Sleep bras are thrust the affected hand deep into up the stocking for the affected normally front-fastening and give the side pocket and pull up the leg in the unaffected hand all the soft support and are useful while pants. This allows the arm to hold way to the toe. Put the stocking dressed in nightwear. They usually the weight of the pants rather than over the toes and foot. Uncross have a high back with wide straps. the fi ngers. the legs and pull the stocking to • Crop tops give little support but the knee. Gather the other stocking • Use the unaffected hand to tuck in usually have wide straps and leg to the toes and put it over the the shirttails. no fastenings. They can be put toes of the unaffected leg and start • To close the waist, put the affected on over the head or held by the pulling up the stocking. Stand up thumb through the last belt loop, shoulder straps and pulled on over to pull pantyhose completely up or then push against that to draw the feet and legs, like pants. lie on the bed and roll side-to-side. waist closer together. (continued) January/February 2007 31 EVERYDAY Connecting You to Helpful Ideas where to fi nd clothing, assistive devices Know... Access Clothing Life With Ease THE WARNING SIGNS 1-778-229-4235 (mobile) 1-800-966-5119 OF STROKE: www.accessclothing.ca www.lifewithease.com • Sudden numbness or weakness of the face, arm or leg, especially Adaptive Clothing ActiveForever.com on one side of the body 1-800-572-2224 1-800-377-8033 www.adaptiveclothing.com www.activeforever.com • Sudden confusion, trouble speaking or understanding Professional Fit Clothing Able Medical Aids • Sudden trouble seeing in one 1-800-422-2348 1-800-831-9099 or both eyes www.professionalfi t.com http://store.ablemedical.com • Sudden trouble walking, dizziness, loss of balance or coordination Silvert’s Caregiver Products.com 1-800-387-7088 1-877-750-0376 • Sudden, severe headache with www.silverts.com www.caregiverproducts.com no known cause (continued from page 29) Lucy O’Neil is caregiver for her husband, people far worse off than me, yet everyone seemed to have William O’Neil, who had a stroke in 2004 at reason to smile and laugh. “Helping hands were extended to me, we laughed at age 60. Bill was an electrician and a proud ourselves, played music and sang crazy songs together. member of International Brotherhood of I listened to others as they shared their grief and anger. Electrical Workers Local 35 for 40 years. I think the difference with a program like Moving On is In May 2004 Billy suffered a stroke – and I do mean that it isn’t all about me, it’s about us and how we can suffer. Paralyzed on the right side, experiencing memory contribute to the group while trying to improve ourselves.” loss and aphasia, he went through rehab with various I like that the program encourages caregivers to stay therapists who I believe are “walking angels.” His family during the sessions. Indeed, I was greeted by other caregivers came to cheer him on, and hope was in the air. with much understanding and kindness. Caregivers are Like many others coming out of rehab, Billy was encouraged to contribute, and the therapists listen, knowing encouraged by his progress, but as days became months, that we spend 24/7 with the aftermath of stroke. he began a downward emotional spiral. He withdrew Billy has become more social, his speech is improving emotionally and became very antisocial, angry and and he is – very slowly – gaining much-needed stamina. depressed. He seemed to lose all hope of further recovery. By sharing our vision and experiences, we hope that When our therapists suggested Moving On, Billy was in no more communities will develop similar community-based mood to join, so I had to cajole him to attend in March 2005. exercise classes. Billy says, “As the session progressed with hard work Editor’s Note: If you would like information about the Moving On and seemingly impossible challenges, I began to see program, please call the Warmline, 1-888-4-STROKE (478-7653). things more clearly. To my surprise, there were many 32 January/February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p WITHOUT PLAVIX WITH PLAVIX PLAVIX HELPS KEEP BLOOD PLATELETS FROM STICKING TOGETHER AND FORMING CLOTS, WHICH HELPS PROTECT YOU FROM ANOTHER HEART ATTACK OR STROKE. If you’ve had a heart attack or stroke, the last thing you need is another one sneaking up on you. PLAVIX may help. PLAVIX is a prescription medication for people who have had a recent heart attack or recent stroke, or who have poor circulation in the legs, causing pain (peripheral artery disease). TALK TO YOUR DOCTOR ABOUT PLAVIX. For more information, visit www.plavix.com or call PLAVIX OFFERS PROTECTION. 1-888-355-1152 PLAVIX is proven to help keep blood platelets from sticking together and forming clots, which helps keep your blood flowing.This can help protect you from another heart attack or stroke. IMPORTANT INFORMATION: If you have a stomach ulcer or other condition that causes bleeding, you shouldn't use Plavix.When taking Plavix alone or with PROVEN TO HELP PROTECT FROM some medicines including aspirin, the risk of bleeding ANOTHER HEART ATTACK OR STROKE may increase.To minimize this risk, talk to your doctor before taking aspirin or other medicines with Plavix. Additional rare but serious side effects could occur. © 2006 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership. US.CLO.06.12.001/December 2006 B1-K0263A-12-06 sanofi-aventis U.S. LLC NON-PROFIT ORG. U.S. POSTAGE PAID PERMIT NO. 4 LONG PRAIRIE, MN National Center 7272 Greenville Avenue Dallas, TX 75231-4596