Moving On Together – The Difference a Group Makes
Transcription
Moving On Together – The Difference a Group Makes
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 contents nts 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. Moving On Together — the Difference a Group Makes 28 A post-stroke exercise group in Connecticut helps enhance ongoing recovery. 18 16 24 Departments Letters to the Editor 4 Stroke Notes 6 Readers Room 12 Life at the Curb 27 Everyday Survival 30 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 Staff and Consultants: Jon Caswell, Lead Editor Copyright 2007 American Heart Association ISSN 1047-014X Dennis Milne, Vice President, American Stroke Association Jim Batts, Writer Wendy Segrest, Director, American Stroke Association Operations Pierce Goetz, Art Director Stroke Connection Magazine 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 permission 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 should not be construed as a recommendation or endorsement of these products or services. Debi McGill, Editor-in-Chief 1-888-4STROKE (1-888-478-7653) Mike Mills, Writer Michelle Neighbors, Advertising Sales StrokeAssociation.org YOU DON’T WANT ANOTHER HEART ATTACK OR ANOTHER STROKE TO SNEAK UP ON YOU. WITHOUT 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). PLAVIX OFFERS PROTECTION. 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 some medicines including aspirin, the risk of bleeding 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. WITH PLAVIX TALK TO YOUR DOCTOR ABOUT PLAVIX. For more information, visit www.plavix.com or call 1-888-355-1152 PROVEN TO HELP PROTECT FROM ANOTHER HEART ATTACK OR STROKE © 2006 Bristol-Myers Squibb/Sanofi Pharmaceuticals Partnership. 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($ !"# #($!$ ## ! # 433+(# '&&" &# 433.#"1!#/0&#'+!,+2#+'#+!#/,$$,,0".,- 4 '*-.,2'+%*, ')'04/'+%1+!0',+))#!0.'!)'*1)0',+ 0&#A@@!0'20#/0&#*1/!)#/0&0)'$00�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o n n e c t i n g Yo u t o U s I am caregiver to my wife, a three-year ischemic stroke survivor. Pam has right-side paralysis, including drop foot and aphasia. She manages to walk on her own with the aid of a leg brace and cane, although she’s somewhat unstable. Her right arm and hand are 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 interest, especially the references to clinical trials and the positive results. I have found several Web sites listing ongoing or upcoming trials, but there is virtually no contact information and little detail. In many cases subjects have been selected before the information is made available. Is there a place, organization or Web site where she can be listed as a volunteer for any applicable trials so that a researcher could get in touch with us? Walter James, Caregiver • Tallulah, Louisiana Editor’s Note: We have been unable to find a central listing for people who want to volunteer for trials. However, www.stroketrials.org carries a comprehensive listing of most of the trials involving stroke patients. In the left-hand column, click “Recovery Trials.” On a recent visit to the site we found several trials that were recruiting participants. Trials can also be found on the National Institutes of Health site, www. clinicaltrials.gov. Click on “focused search,” then enter “stroke” in the “disease or condition” line, and enter “rehabilitation” in the “experimental treatment” line. You can find more letters to the editor at strokeassociation.org/strokeconnection. WE WANT TO HEAR FROM YOU mail: c/o Editor-in-Chief Stroke Connection Magazine 7272 Greenville Ave. Dallas, TX 75231 Regarding Nancy Phillips’ question about shoes in the July/August issue: Try buying shoes for the sport of curling. A pair of curling shoes includes one slippery shoe, and you can request which shoe you want slippery. We used to make our own curling shoes by gluing a piece of thin linoleum onto the bottom of the shoe. Good luck, hope this helps, I have the same problem. Rodger Sparks, Survivor • Canada My husband Johnny’s severe stroke three years ago left him with limited use of his right leg, no use of his right arm, basically speechless and unable to write or remember his ABCs. Many times I thought of stopping delivery of Stroke Connection because all the stories seemed to contain magical recoveries, then the August issue finally had realistic letters. A. Culbertson is right-on about money making a difference. I’m sure there are many people who simply can’t afford treatments that would help. I also believe that where you live makes a difference: We live in a small, rural community with no close rehab. He is 58 and I am 56 and must work for insurance because Medicare is not accepted by many doctors. I leave him alone a lot, which is scary because he has a seizure disorder, but caregivers are expensive and adult day care is 30 minutes away. I think your magazine should concentrate more on the reality of most stroke families. If you don’t have a computer, information is hard to get as most places you call are closed when I get home from work. Nancy Phillips should try Dexter or Eastland shoes. They are made in the U.S. and usually have leather soles. Jan Neels should really investigate 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 that doesn’t encompass the whole foot in plastic, I would love to know about it. Maxine Bryant, Caregiver • Huntsville, Arkansas fax: 214-706-5231 e-mail: [email protected] 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. 4 January/February 2007 This is a response to Jan Neels’ question in the July/August issue about using Botox. My husband had a stroke nine years ago. It affected his left side, and he is unable to lower his arm, and his fingers and toes draw up from spasms. When this happens, it’s very painful to walk or touch his toes or fingers. He has been taking Botox injections for five years; every three months they use five vials throughout his left side. They say it will take up to two weeks to see results, but my husband can tell a difference in only three days on his fingers and a week on his toes. The bigger muscles take longer. We seem to get the best results with a neurologist. The benefit seems to last longer if you exercise during the three months. This is truly a godsend. Linda Adkins, Caregiver • Chandler, Arizona I have had chronic pain for eight years and have tried every medication I can think of. Recently my pulmonary specialist thought that taking Xanax might help. Well, this medication has been a blessing for me. It has caused this constant numb tingly feeling to be almost bearable. Please keep the magazines coming. It is so comforting to hear other people’s stories. They seem to make mine so insignificant. I was never paralyzed or struck mute, and I can get around using a cane, mostly because my dear husband does so much for me. God bless him and all the other caregivers for all their love and unselfish care. Mary Elliott, Survivor • Chattanooga, Tennessee I had a stroke in May 2004 at age 52. Fortunately, I was not paralyzed but I had aphasia and short-term memory loss. I have done my best to overcome these disabilities and have been successful for the most part. In June 2005 I walked a marathon in Hawaii to benefit the American Stroke Association. That accomplishment was the thrill of a lifetime. Although I continued to exercise and watch my blood pressure, I started having chest pains while exercising and walking long distances. I ignored the 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” [reprinted below]. It was a cold dose of reality for me. I could no longer deny that I was having classic heart attack symptoms. I went directly to the emergency room, where they told me I wasn’t having a heart attack but that I did need to see a cardiologist. While doing a stress test in the doctor’s office, I survived atrial fibrillation and ventricular tachycardia at the same time. Fortunately, I was in the right place. Tests showed I had 90 percent blockage in my right coronary artery and 50 percent blockage in my left. The doctor recommended emergency quadruple bypass surgery. At the last minute he put a stent in one of the arteries so that only three were replaced. After all that, I am very happy to be alive and grateful for your magazine. Larry Miles, Survivor • Salem, Oregon T h e Wa r n i n g S i g n s o f H e a r t A t t a c k : • Chest discomfort. Most heart attacks involve discomfort in the center of the chest that lasts more than a few minutes, or that goes away and comes back. It can feel like uncomfortable pressure, squeezing, fullness or pain. • Discomfort in other areas of the upper body. Symptoms can include pain or discomfort in one or both arms, the back, neck, jaw or stomach. • Shortness of breath. May occur with or without chest discomfort. • Other signs: These may include breaking out in a cold sweat, nausea or lightheadedness. If you or someone you’re with has chest discomfort, especially with one or more of the other signs, don’t wait longer than a few minutes (no more than 5) before calling for help. Call 9-1-1 ... Get to a hospital right away. January/February 2007 5 S T R O K E C o n n e c t i n g Yo u t o t h e Wo r l d Severe Sleep Apnea Raises Risk of Stroke ‘Snoring is the most important warning sign for sleep apnea.’ 6 January/February 2007 E lderly people with severe sleep apnea have more than twice the risk of ischemic stroke than elderly people with no or mild apnea, according to research reported in Stroke: Journal of the American Heart Association. “This study provides more evidence that severe sleep apnea represents an independent risk factor for stroke in the elderly population,” said Roberto Muñoz, M.D., lead author of the study and a neurologist at the Hospital de Navarra in Pamplona, Spain. Sleep apnea is characterized by episodes of 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 less prevalent in the elderly compared to middleaged people,” Dr. Muñoz said. Researchers suggest apnea treatment be started if doctors find a high rate of episodes of decreased breathing or breathing interruption, particularly in patients with other cardiovascular risk factors. “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.” S T R O K E C o n n e c t i n g Yo u t o t h e Wo r l d Stroke May Cost U.S. $2.2 Trillion by 2050 U 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 for people who suffer the most common form of stroke, a new University of Michigan study predicts. A disproportionate share of the costs will fall upon African Americans and Latinos/Hispanics because of their tendency to suffer strokes at younger ages and get lessadequate preventive care than others. In fact, stroke-related costs among people under age 65 account for about half of the predicted total, which includes lost wages. The study, published in the journal Neurology and funded by the National Institutes of Health, highlights the importance of efforts to prevent future strokes in all ethnic groups, but especially in young and middle-aged African Americans and Latinos/Hispanics. The study’s authors say the $2.2 trillion estimate is extremely conservative because it is based on current rates of the conditions that increase the risk of stroke – such as diabetes, cardiovascular disease and obesity. Such conditions are projected to become even more common in the future. The $2.2 trillion estimate includes the cost of ambulances and hospital stays, medications, nursing home care, at-home care, doctor’s visits and lost earnings for stroke survivors under age 65 (based on current median salaries for each ethnic group). Earnings of those over 65 weren’t included. In all, the study found that the total direct and indirect costs of stroke in the next 45 years will be $1.52 trillion for non-Hispanic whites, $313 billion for Latinos/ Hispanics and $379 billion for African Americans. On a per-capita basis across the whole population, a white stroke patient’s costs will average just under $16,000, while the cost for each Latino/Hispanic patient will be just over $17,000 and the cost for each African-American patient will be nearly $26,000. Lipitor Reduces Risk of Recurrent Stroke atients taking Lipitor® (atorvastatin calcium) who had a prior stroke reduced their chances of having another stroke and major coronary event, such as heart attack, according to a report in The New England Journal of Medicine. The Stroke Prevention by Aggressive Reduction in Cholesterol Levels (SPARCL) trial was the first major study designed to examine the benefits of lipid-lowering in stroke patients. Up to one in five stroke survivors has another stroke within five years. In SPARCL, 4,731 patients who had no history of heart disease and had experienced a stroke or TIA within six months before enrolling in the trial were followed for an average of about five years. Patients had mildly elevated cholesterol levels, and were treated with either the statin drug Lipitor (80 mg) or placebo. In the trial, Lipitor was shown to reduce the risk of an additional stroke by 16 percent and major coronary events, such as heart attack, cardiac death or resuscitated cardiac arrest, by 35 percent compared to placebo. P 8 January/February 2007 “This is important information for physicians because patients who have had a stroke are at much greater risk for suffering another one, yet treatment options to reduce their risk are limited,” said Dr. Michael Welch, SPARCL investigator, neurologist and president of Rosalind Franklin University of Medicine & Science. “Patients taking Lipitor in this trial showed a significant reduction in stroke and coronary events. This is impressive when you consider that a majority of patients in the trial were already being treated with medications such as blood-thinning and blood pressure-lowering medications that are often given to reduce stroke risk.” “Stroke is a fatal or debilitating condition that has significant impact on patients and their families, and reducing that risk is a key priority in cardiovascular medicine,” said Dr. John LaRosa, president and professor of medicine, SUNY Downstate Medical Center. “These results underscore the potential benefit of intensive Lipitor therapy for stroke patients who may be at high risk for an additional stroke even in the absence of previous heart disease.” %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 XBMLJOHDZDMFIFMQJOHZPVXBMLNVDINPSFOBUVSBMMZBOEFG¾DJFOUMZ.PTUQBUJFOUTXJUI VQQFS NPUPS OFVSPOSFMBUFE GPPU ESPQ XIP USZ 8BML"JEF FYQFSJFODF JNNFEJBUF BOE TVCTUBOUJBMJNQSPWFNFOUJOUIFJSXBMLJOHBCJMJUZ/POJOWBTJWFBOEFBTZUPVTFFWFSZ EBZ8BML"JEFJODSFBTFTZPVSNPCJMJUZTUBCJMJUZ DPO¾EFODFBOEJOEFQFOEFODF/PXZPVIBWFB CFUUFSXBZUPHFUBMFHVQPOGPPUESPQ 6IUYIWX]SYV*6))+YMHIXS*SSX(VST [[[[EPOEMHIGSQ;%0/ -RRSZEXMZI2IYVSXVSRMGW%PP6MKLXW6IWIVZIH%PPXVEHIQEVOWERHVIKMWXIVIH XVEHIQEVOWEVIXLITVSTIVX]SJXLIMVVIWTIGXMZILSPHIVW -RHITIRHIRGI3RIWXITEXEXMQI S T R O K E C o n n e c t i n g Yo u t o t h e Wo r l d 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 first 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 means more than cleaning it. Please send to: American Stroke Association Planned Giving Department 7272 Greenville Avenue Dallas, TX 75231-4596 My sister would always leave her house spic-and-span whenever she went away on a trip – “just in case” something happened. When she died, the house was spotless, but her estate was a mess. We couldn’t even find her will, to find out what her wishes were. Estate planning is critical to your own and your family’s future. We urge you to send for our free brochure Planning for Women. The American Stroke Association hopes you will find this information helpful in formulating ideas for your estate plan. You can also call toll-free 888-227-5242, visit us at americanheart.org/plannedgiving or e-mail us at [email protected]. c Please send me the free booklet Planning for Women. (CDA) c Please put me in touch with an American Stroke Association Representative. (CDD) c I am considering a gift to the American Stroke Association through my estate plan. (CDC) c I have already included the American Stroke Association in my will/estate plan. (CDB) Name Address City State ZIP Phone Birthdate E-mail 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 C o n n e c t i n g Yo u t o O t h e r s Learning Lessons I t will be a major feat if I complete this. It’s as if there’s a committee in my head, and each member is telling me what to write! And typing is another matter entirely: I used to type 90 words/minute, but since my stroke I have to search for each letter. My brother Richard does all my typing. But no one else can tell my story, so here goes. PRE-STROKE Jan Cleveland ‘The things I’m learning are life’s important mysteries, and I’ve got a lot more to learn!’ 12 Before my stroke I enjoyed rollerblading with my three dogs regularly, playing tennis, snow skiing, scuba diving, running, riding motorcycles and participating in church. For 12 years I did Web design for an oil company. Feeling the need for a change, I enrolled in barber college. When I finished school a year later, I was waiting to take my State Board exams when I got my next assignment, an opportunity to get to know God more intimately. You might say it was a medical altar call. STROKE I had an ischemic stroke in March 2003. The doctors didn’t give my family much hope for my recovery. They also said I had a mass on my heart. I know this stroke didn’t catch God by surprise. Knowing He allowed the stroke gave me something to work through. Was He mad at me? I knew that wasn’t His nature! I took time in the hospital to grieve what I had lost, but since that time I haven’t looked back. When the doctors did surgery, they didn’t find a mass. I have no doubt Dr. God had already operated on me. I can’t say enough about my family or the unsung heroes in my church who faithfully cleaned my room, the bathroom and took time to minister to me. I could not have made it without their help. January/February 2007 My right arm and leg are on extended vacations. They served me so well for 58 years. We sure had some good times! I wear a brace on my right leg. POST-STROKE At first I was wheelchair-bound, then walker-bound, and now I’m getting around pretty well. I have discovered time after time that God gave His angels charge over me. I drive, grocery shop, shop-shop, cook and feed my dogs twice a day. I live with my 93-year-old mother. We are quite a team! She lends an extra arm when I need one. We are both stubborn and that gets a little hairy sometimes. It’s been a lifechanging experience for both of us. About a year ago I was helping my brother bathe one of my dogs. She got startled, and because I was holding her by her collar, my hip was broken. That was a setback! I’m glad to say that my hip is doing fine. For a year I’ve attended a weekly aphasia support group. Being there reminds me I have so much to be thankful for. Many folks have trouble speaking at all. I’d like for people to know my intellect is still intact, but expressing myself creates a short circuit. We sure take things like speaking for granted. I never knew it took so much effort to construct a sentence. I also attend a stroke support group every month. It is so neat being around people who you can learn from, like how to clean your nails with one hand using a toothpick. My new life is full of challenges and obstacles. The occasional curb still trips me up, and my wig goes flying, but if I had the opportunity to go back to my rollerblades, I wouldn’t. The things I’m learning are life’s important mysteries, and I’ve got a lot more to learn! Jan Cleveland, Survivor Dallas, Texas New Directions M y love for music started at age 5 when I began playing the violin. At age 12, I started playing the trumpet. My dream was to play professionally in a band. By age 19 I was doing that. Playing in a dance band was fun, 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 my wife Marcia’s help, I went back to college at age 39 and four years later earned a teaching credential in music education. I taught music in junior high and high school in San Jose, Calif., for several years. I also taught in Texas for a short time before I burned out. After that, Marcia and I bought two retail businesses, and a few years later I had a heart attack. We sold the businesses, and about a year later I joined the staff of Family Life Ministries, a division of Campus Crusade for Christ, in Little Rock, Ark. I worked in the development Richard Goodrich department. One of my responsibilities was to develop relationships with the ministry’s donors. For seven years I was at home there, praying with people all over the country by telephone. In fact, I was at my desk there when I had a massive 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 ‘I thank God for my ability to sketch and paint. You can do anything with God’s help and an encouraging wife like mine.’ left eye and with little use of my right hand and arm – I was right-handed for 69 years. The stroke’s most painful effect was not being able to speak. Because of my aphasia, I can no longer tell Marcia that I love her in my own voice. Fortunately, I am able to hear and understand just fine. I was once an avid reader, but now I’m only able to read newspaper headlines and short paragraphs. My biggest blessing is that I have a new “voice.” It is an electronic communication aid called “Pathfinder.” It speaks what I program it to say on the keyboard made of 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 first show this year and sold two of my artworks. I thank God for my ability to sketch and paint. You can do anything with God’s help and an encouraging wife like mine. Richard Goodrich, Survivor Little Rock, Arkansas January/February 2007 13 READERS C o n n e c t i n g Yo u t o O t h e r s Rock of Gibraltar ‘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.’ I am a four-year stroke survivor. We have a 33-foot motor home that we take to Yuma, Ariz., each winter, and the first week of March 2002 I was organizing it for Joan and Joe Goss our return home. I awoke early one morning with an excruciating headache and woke my husband Joe because I could not find the aspirin. He realized that something was seriously wrong because I was 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 like to see?” I said, “Absolutely!” 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 the brain and spinal cord). After further tests, she referred me to the Mayo Clinics in Scottsdale and Phoenix. The tumor was removed the following week, and when I was finally 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 fly 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 I ’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 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 O n December 1, 1998, I was a unit clerk at the Oklahoma University Hospital. I was working 16-hour shifts, 40 hours in a weekend. About 7 p.m. I started having terrible pain in the right side of my head. I knew something was wrong and asked the charge nurse if I could go to the ER. Unfortunately we had a code blue right then, and I was told to stay at my desk. During that time I could not think, remember, talk or swallow. James, my husband, showed up and knew something was wrong, but it seemed to have passed after 20 minutes. The next day I woke up unable to talk, walk or see out of my right eye. My husband said the right side of my face drooped, and called the doctor. At the hospital, I had all kinds of tests, including a CT scan and an MRI, which showed nothing. Fortunately, the swallowing test proved that I had had a stroke, and I was sent home… without rehab. I was 37 years old. For almost two years my family was my rehab. My oldest son, Bryan, taught me to write and read; my second son, Jeffery, taught me to speak and count; and my daughter, Alisha, taught me to eat. James did my therapy and everything else. In July 2000, I had another stroke, and this time I was sent to rehab for a month. It was hell, but we made it through. My husband James is my hero, and I tell him so. Most people would have quit, but not him. The last five years have not been easy: Most of my friends are gone; I have memory problems – people see me and call me by name, but I don’t even know them. I have to be careful what I eat because of my swallowing problem. I am on disability because I can’t work, and I miss that. I do a lot of sewing, embroidery, cross-stitch and crochet. My grandbabies keep me going. We have seven and another one on the way. And I do a lot of praying. I am writing because I saw Dick Clark on his New Year’s Eve show, ringing in 2006. I was so moved by his strength and endurance to get in front of the whole world and show his stuff. I have watched him my whole life, and I have never been more proud of someone. He showed people everywhere that just because you’ve been knocked down doesn’t mean you have to stay down. I would like to tell him that he is my second hero! Teresa Switzer, Survivor Oklahoma City, Oklahoma January/February 2007 15 the High Road with Gary Hyink Gary Hyink’s life journey has been all over the map, ranging from the proverbial “nine miles of bad road” to his more recent “highway to heaven.” Along the way he’s made God his tour guide and traveling companion and has taken biblical scriptures as his roadmap. Deborah and Gary Hyink He has needed the help to negotiate some serious road blocks and detours along the way. “My stroke tossed me into poverty like an uncaring lover who rejects you and totally devastates your 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. “I became homeless. I was forced to sell my blood for money, eat from food lines to survive, sleep at the Salvation Army and seek medical care from the poor people’s hospital.” “I would call myself brain-damaged but intelligent,” he says. Several “A” grades he earned in college courses he has taken for credit confirm his self-evaluation. However, the stress of trying to take more than one course at a time triggered more seizures and ended his work toward a degree. 16 January/February 2007 by Jim Batts Gary, an Air Force veteran, was 26 when he had the stroke. He’s 45 now. His journey has led him from tiny Ashford, Alabama, to Birmingham, where he met his future wife at a church. Deborah calls him her “trophy husband,” a title he proudly has embossed on one of his credit cards. They live in New York City, where she is an assistant professor of nephrology at Mount Sinai School of Medicine. “I’ve had many positive and negative experiences, because of my stroke,” Gary says. In his walk by faith he has chosen to emphasize the positive by writing poems to encourage others in difficult circumstances. “The Bible says in the book of Proverbs that ‘poverty will come upon you like a bandit and scarcity like an armed man,’” he said. “Well, that’s what happened to me and led me to write a poem called ‘Homeless.’” Homeless My world fell apart the other day. A personal tragedy tore my world away. I was once so comfortable and secure. My life is now a constant blur. Family times and days well spent Are now replaced by cold, hard cement. I never meant for it to be this way, A personal tragedy tore my world away. It’s kind of you to help me when you do. Maybe you realize it could happen to you. “Being homeless was a painful blessing,” Gary said. “I met many wonderful, caring people I never would have met otherwise. That’s how I met my wife. We met in a singles’ class at Briarwood Presbyterian Church in Birmingham. We celebrated our 11th-year wedding anniversary March 11, 2006. “I see people every day on the street in the same situation I was in – homeless and trying to survive as best as they can. I read that, ‘The Lord sends poverty and wealth; He humbles and He exalts. He raises the poor from the dust and lifts the needy from the ash heap.’ It was worth all I went through to meet all the friends 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 fulfill this desire. They often fail to meet our needs, and this has led to countless personal tragedies. “I believe that only God can perfectly fulfill 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 his trilogy (Thank You Lord, at right). ‘Life is hard,’ Gary says.‘Hang in there and have faith.’ Mankind’s Prayer So close in thought I wish to be With someone who can hear My heart’s sad cry, its silent weep, Caused from despair, I fear. For life is often so hard to take, It deals such a painful blow, Then no one is there with whom to share, No one who wants to know. For everyone has their problems too, Enough gloom and despair of their own. They have no time for me to share My thoughts I so want known. I pray the day will quickly come, The day when I will see The person who will always listen, And with all their heart love me. Thank You Lord 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, so on my life’s purpose I may start. I need your guidance every day. Life is often so hard for me. 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. 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, so I may praise you for all eternity. January/February 2007 17 F E AT U R E Been There, Done That. Sharing Your Wealth by J o n C a s we l l 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 benefit significantly from support a lot earlier in the recovery process. 18 January/February 2007 That was physiatrist Dr. Cynthia Bennett’s thinking when she put together the Rehab Buddies program at Penrose-St. Francis Rehabilitation Center (PSF) in Colorado Springs, Colo. “During my training at another hospital, I noticed that there was a support group for spinal cord injury outpatients, but there was nothing for inpatients, and I thought patients needed that kind of support during the acute phase, too,” she said. “When I came to PSF, that concept was in the back of my mind. We have quite a few people here who have had lifechanging illnesses or accidents. “I started asking patients who had successfully recovered to visit those patients. I asked former stroke patients to visit current stroke patients, and former spinal cord patients to visit current spinal cord patients. The Rehab Buddies help current patients know that someone understands what they are going through and survived it and made a new life.” Parker Finch, a stroke patient at the San Diego Rehabilitation Institute (SDRI) at Alvarado Hospital in California, had had a similar impulse during his recovery. While he was still in rehab, he told his therapists that 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 regular training in HIPAA and hospital rules that all our volunteers receive. “After they went through all that,” she said, “we did a lot of role-playing exercises about what the visit should look like.” After all the training was over, some of the survivors decided that they weren’t comfortable doing it and dropped out. Unlike PSF’s Rehab Buddies, SDRI’s peer visitor program is only for stroke patients. “I think the most important part of the training was the listening skills,” said Finch, a retired Navy “The Rehab Buddies help current patients know that someone understands what they are going through and survived it and made a new life.” — Dr. Cynthia Bennett commander. “It was good for me because I tend to be impulsive and talkative, but the key is learning to listen and get the patients to tell their stories.” “As stroke survivors we feel imminently qualified to talk to stroke patients,” said Jacqueline Henkel, age 72 and a visitor at SDRI. “I always advise the patients I see that strict adherence to therapy sessions is key to recovery. I also tell them that a positive attitude and a sense of humor is equally important. I have often thought, ‘Survival is easy, recovery is another matter.’” Burley Vandergriff, age 75 and a retired fighter pilot, was one of the original rehab buddies at PSF. Burley had a stroke after his second quadruple bypass surgery three years ago. He, too, received hospital training regarding privacy and hospital rules. Stroke survivor Parker Finch sharing with survivor Gertrude McMarion “I’ve had 16 or 17 buddies,” he said. “I start with them while they’re still in rehab, and then I keep track of them when they go home or to another facility. I still have contact with all of them. In fact, I’ve recruited four of them to be rehab buddies themselves.” Like Burley, Cathy Mundy, age 62, has been part of the Rehab Buddies program since it was started in November 2004. After her stroke she was in the hospital for over two months and has been in therapy ever since. She has regained use of her right side, though she had to give up her job as a research librarian. (continued) January/February 2007 19 F E AT U R E “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 Peer visitor Dick Goranson visits with Hazel Erdmann “All the training for Rehab Buddies takes about three months,” Cathy said. “There’s hospital training – HIPAA and patient safety and fire safety – which we’re tested on. There’s also a tuberculosis test. Then we learned active listening and did role playing, and new buddies shadow experienced buddies. “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. One of my buddies has had a very hard time of it and won’t ever go home. You learn to focus on them, and when we talk, we only talk about our experience. And we never talk about religion. If the patient wants to talk about it, that’s fine, but I never talk about it. We also make ourselves available to the families.” Dick Goranson, age 69, of Kennewick, Washington, also wanted to help stroke survivors after his stroke four years ago. He started his own peer visiting team and called it the After the Stroke Advocacy (ATSA) team at Kaldec Hospital in Richmond, Wash. “Our ATSA team functions differently than a traditional stroke support group,” Dick said. “We work with patients while they’re in intermediate care or in rehab in the hospital. Our visits Rehab buddy Burley Vandergriff 20 January/February 2007 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 identification that allows them to visit the hospital at other than visiting hours. And in each case the hospitals are quite supportive of the programs. “I didn’t have to do much selling,” Dick said. “I went to the hospital board and the rehab nurses, and they welcomed it with open arms.” At PSF, the response was much the same when Dr. Bennett proposed Rehab Buddies. “The board was enthusiastic. They understood how extensive our training was.” Talking to someone who has been through what they are going through helps stroke patients in a couple of ways. Not only do they get to see someone who has recovered, but they get to vent their feelings to someone who really understands and isn’t “blowing sunshine in their face,” as Burley Vandergriff put it. Peer visits also provide another avenue for communication between patients and the healthcare team. “Patients say things to their buddies that they won’t say to any of us,” said Dr. Bennett. “For example, they may tell the buddy that they wish they had not survived. A regular volunteer or even a family member, might start to offer advice or say, ‘Oh, it’s not that bad, don’t worry, you’ll walk out of here.’ Peer visitor Jacqueline Henkel ShareGivers™ – Making a Contribution ecause a stroke can be devastating, survivors and family caregivers have a need for someone to understand their feelings of loss. They also have a great need for someone to give them answers to practical daily living questions such as these: B • Why am I so sad and emotional? • When will I stop feeling like a burden to my family? • Will I ever get over the grief and anger I feel? • And what about the emptiness? The clumsiness? The forgetfulness? ShareGivers can help meet that need. The purpose of the ShareGivers peer visitor program is to provide hope and encouragement to stroke families while educating stroke families about what has happened to them. ShareGivers makes it possible for the American Stroke Association and its community partners to help families answer those questions and overcome the many challenges brought on by a stroke. A peer visitor who has personally experienced stroke and completed the ShareGivers training course is uniquely qualified to understand a new survivor’s concerns, frustrations and fears. The program teaches special listening skills and trains visitors to offer encouragement based on their perspective as a fellow survivor or caregiver. After mastering the use of these skills and others taught in training, peer visitors are prepared to visit at community hospitals, rehabilitation centers, nursing homes and other facilities. Receiving information from others who have experienced a stroke holds special value for new stroke families. ShareGivers is really two programs in one. The first eight classes of the 12-week course address the needs of stroke families in general. ATSA volunteer Russ Wodehouse visits with They are a stand-alone survivor Earlene Johnson stroke education course that includes information about the visits made by volunteer peer visitors. causes and consequences of a stroke, Completion of all 12 classes prepares resulting disabilities and the effect of visitors to become ambassadors for these disabilities on a person’s physical stroke family education and support and and mental health, as well as lifestyle and provides a unique and extremely valuable self-esteem. The material is intended to service to others. increase knowledge about stroke and, With the tools provided in the at the same time, decrease anxiety, ShareGivers kit, local program sponsors loneliness and isolation. The psychosocial can help survivors gain a better aspects of a stroke are also covered. understanding about stroke, self-care Issues such as stress, emotional upheaval, strategies they can use to help in their self-esteem and intimacy are addressed. rehabilitation and how to help prevent The last four ShareGivers classes another stroke. The ShareGivers training prepare stroke survivors and caregivers course is a structured group education to serve as volunteer peer visitors in program for survivors, caregivers, family their community. This part of the training members and peer-visitor candidates. course focuses on teaching peer visitors The course is facilitated by volunteers to listen, share and learn together with who are healthcare professionals. the survivors and caregivers they visit. For further information or to Active listening skills are at the center order a ShareGivers training course, of all four classes, since listening is the call 1-888-478-7653 or visit www. primary ingredient in all the successful StrokeAssociation.org/sharegivers. “Buddies are trained not to give false hope or medical advice. We train them to share information with the physician or case manager if they are concerned. They tell us if someone is depressed, for instance. Patients don’t always feel they can talk to doctors; they’re more comfortable sharing things with a buddy.” Cathy Mundy agreed. “My buddies and I can talk about very personal things, like bladder control. They want to know what I’ve tried that worked. I think this is a really valuable role for us to play.” Both the SDRI peer visitors and the PSF Rehab Buddies have monthly meetings where they discuss the patients they worked with the previous month. Of course, no names or medical information are shared. Said Parker Finch from SDRI, “At the monthly meetings we recap our visits from that month, and that is really helpful because it’s a lessons-learned session: Here are the mistakes, and here’s what we did right. It’s a valuable learning tool. The meetings also encourage a kind of team spirit.” “We review the cases, and anything that other visitors can learn from is shared,” said Mary Williams, who coordinates the program at SDRI and leads the recap meetings. “For instance, communicating with a patient who has aphasia. It’s important for peer visitors to learn how to do that. The visitors also continue to develop (continued) January/February 2007 21 F E AT U R E “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 Rehab buddy Cathy Mundy, left, sharing with Betty Puckett their stroke expertise, and the meetings help them deliver their information better and better.” “We meet every month and talk on the phone regularly,” said Cathy Mundy from PSF, “but we don’t really socialize, though we’re all pretty good friends. We like each other and we share a lot.” “Parker takes the tough-love approach with the patients he visits,” Mary Williams said. “When he talks to them about doing therapy, they listen. I can say the same things, but the patients don’t take it as well.” “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 22 January/February 2007 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 difficult 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 not take it personally. “Carol has been a nurse for 30 years, and she helped me see that Mother is beginning to have dementia and that she most likely won’t get better. They said it was a role reversal, that I have to treat Mom like you’d treat a stubborn child, firm but compassionate. “When I was really down recently, Richard shared a great analogy with me: What does the stewardess say when she’s giving instructions about the oxygen masks? She says put it on yourself first before helping someone else, even your child. I know it’s true, if I don’t take care Survivor Mickey Bohnet, left, with daughter and caregiver Birdie Royal 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.’ “It’s also incredibly Cathy Mundy beneficial 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 benefits more; getting and receiving are so intertwined. It’s very exciting to watch. “I have a photograph of our first 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 contact the hospital’s volunteer coordinator and start one. You have experienced stroke recovery, which means you have a wealth of knowledge. Consider sharing your wealth with others who could really benefit from what you have learned.” +DYH\RX DQG\RXU EURWKHU 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 enrolling 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 first 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 reflection 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 floor. I don’t know how I fixed 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 shuffled to the kitchen where my sister Jane was fixing 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 finished 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 office opened. severe but worked all my muscles. I even used weights. During breakfast I had difficulty 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 fighting for massive stroke on a Saturday evening and died by 9 your recovery – and it is a fight. 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 2. You need a sense of humor because you are going all I had. to do things that make no sense at all. The first Jane took me to the emergency room per doctor’s reaction of most people to these little “gems” is instructions. After a thorough exam, they sent me home. to laugh, and if you don’t laugh first, you’ll get That was Friday, and I was to see my doctor on Monday, your feelings hurt. The quicker you can laugh at so I just rested over the weekend. yourself, the better off you’ll be. On Monday, my physician, Dr. Satterfield, examined 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 fight. 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. 4. Pray. You’re not in this alone. You haven’t been “That’s the attitude to have,” he said. forgotten. Fear of the unknown is real, so call on From day one I insisted on trying to do things for the Lord to strengthen you. Even if there are a lot myself. If I couldn’t do something, I would be the first to of people praying for you, pray for yourself. admit it and let someone else do it. I was keenly aware (continued) of my limitations. 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 You 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 11 January/February 2007 25 For quite a long time, I stayed focused on strengthening my body and mind. People were very kind and did all they could to make me as cheerful as possible. I didn’t want to hear that I’d had a stroke. Call it anything you want, but don’t call it a stroke. I called it “my little problem.” I learned not to make sudden turns. I learned to move slowly, and that it’s best for me to have one hand anchored. I made the mistake of making a quick turn 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: 4. Pray! Pray! Pray! Remember the hymn, “Be not dismayed whate’er befall, God will take care of you.” He will be with you and hold you in His arms. Talk to Him, invite His healing power into your life. And remember this above all else: He loves you! Editor’s Note: Stroke is a medical emergency. If you or someone you’re with has had a stroke, or if any of the warning signs start to occur, get help immediately. Call 9-1-1. 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. He may look like a Visigoth barbarian to me, but what do I know? In any case I wanted my first day at the gym to go smoothly. I figured 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 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? Marathon? Hill climbing?” My answers were simple: Olympic training, no thanks. Marathon, not today. 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 fireworks, and the belt slowly started to move. I discovered I had two speeds: Stop and .001. There I was slowly walking, getting nowhere fast, but the feeling 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 bounced on the treadmills to my left and right. Within Paris and Nicky glanced over, and 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 were wondering what my problem was. My instincts told me to ignore them, but “Cool 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. Life at the curb Comedian and stroke survivor John Kawie’s unique perspective on stroke survival 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. My husband Bill participates in a post-stroke exercise program designed by therapists at Lawrence & Memorial Hospital in New London, Conn. They saw the need for a community-based exercise class for stroke survivors after their discharge from formal rehabilitation programs. The therapists were frustrated at not having a good answer for patients who commonly asked questions like, “Where do I go from here?” and “How can I continue to exercise and enhance my recovery in my own community?” The slow pace of recovery experienced by many survivors can be physically and emotionally draining and can result in debilitation, depression and disengagement from a valued life role. The therapists could not find a program designed for stroke survivors, so they created one. They called it “Moving On” and held their first class in the spring of 2003. The group met twice a week for 10 weeks and spent 90 minutes practicing skills needed for the activities of daily living and reentry into the community. Their exercises focused on strength, flexibility, coordination, tone management, communication/ thinking and socialization. After the first eight-week session, both staff and survivors were pleased with the results. The members were not following in the common cycle of decline and debilitation after their release from rehab. Instead, growth and positive changes were happening. The 28 January/February 2007 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 finished outpatient rehab, my therapist suggested Moving On as a way to continue therapy. The group environment is supportive, not condescending, and reinforces physical, occupational and speech therapy. No one is “blowing sunshine” at you. The group reminded me constantly that I was not a freak and could improve, I had only to look to the left or right to see that. Moving On offers opportunities for continuity of motivation, repetition and intensity of therapy. It has been such a worthwhile stepping-stone for me. Ken Wydler, age 76, had a stroke in 2002. He is an accomplished musician who helped the group sing … in tune, no less! When I had my stroke in June 2002, I was encouraged to exercise and was given a lot of hope by very supportive medical staff. I grew closer to my wife of 48 years, and the family was a great support to me. Participating in Moving On has helped me do things physically that I could not do before – plus, it was fun! You have a chance to make friends and are encouraged by the progress of others who are in the same boat. I believe in the plateau theory, but in a positive way: I’ve progressed from one stage for a while then to another and another. I can now go to church every Sunday, visit with family and friends, eat out often, go to Bible study, play with an ensemble group once a month and study painting. I can’t drive yet but hope to one day. Fred Serluca, age 84, had a stroke in 2004. He taught the group to make pizza and brings his own upbeat humor to the group every week. Before I had my stroke, I enjoyed a life of occasional cooking for my family, playing golf, spending time with friends, traveling and reading. I’ve always been outgoing and able not to take matters too seriously. After my stroke, I was confused and bitter, but I then settled down and dealt with the situation. With rehabilitation and the support of my family, I began the journey back to recovery. When I joined Moving On, I just wanted to continue rehab. The big difference for me has been participating in group exercise as opposed to “one-on-one” rehabilitation, which can become tiresome. The impact that this program has made on my life has been positive both 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. Moving On has been very good for me, because I am with other people who are disabled so I don’t feel so different. And I am now walking with a cane! Gary Gidman, age 55, had his stroke in July 2002. He is an accomplished and multitalented musician who has worked as a guitarist, bassist, vocalist and composer. I read about Moving On in a flyer. I don’t recall having any particular expectations but, generally speaking, the class encouraged social involvement and taught me many exercises, challenging my skills in those areas. The program inspired me to give up my walker in favor of a cane, which improved my independence and mobility. As of today, I am involved with four different social workers and have started performing again. I’ve resumed amateur composition, and a band in the UK has recorded a song I co-wrote with a friend in 2005. It was broadcast on the BBC. Leslie Clark Demlein, age 60, had a stroke in January 2004. She was a teacher for 32 years. After my stroke, I was near death so I don’t remember the first two weeks. As time passed by, the medical staff gave me so much hope that I expected to get well in a flash, yet that flash never happened. I was introduced to Moving On by my therapist, but I didn’t know what to expect. However, the whole “gang” made it special for me. Some could talk, some couldn’t. Some were better off than others. I remember we all discussed the question, “How are you dealing with the rest of your life?” The only other female in the group got up and spoke in sobs. Those kinds of things stay with me. I don’t believe in the plateau theory because it means my first year of recovery is all there is. I’m now in the second year of my “strokedom.” I still have a bum right leg and arm plus I have aphasia and apraxia. I continue with speech therapy, but I am improving. (continued on page 32) The Moving On group at rest 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 first, and even now life has limitations. My family life has changed forever. January/February 2007 29 E V E RY D AY C o n n e c t i n g Yo u t o H e l p f u l I d e a s 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 difficult 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 difficult to manage. • Avoid tight-fitting 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 • When getting dressed, lay out clothes in the order they will be put on. Those to be put on first go on top of the pile. • Putting on clothes is easier when sitting than when lying down. • Always put clothing on the affected side first. When undressing, always take clothes off the affected side last. • To put on blouses, jackets and cardigan sweaters, lay the garment on a flat surface with the collar furthest away from you and the back side of the garment facing the ceiling. Bend over and put your arms into the armholes and lift the garment up and over your head. • To remove blouses, jackets and sweaters, unbutton and ease garment off shoulders. Reach behind your back and gently tug the garment off. If your balance is unsteady, sit on the edge of the bed or on a chair to put on your clothing. • To avoid getting buttons in the wrong holes, begin with the ones at the bottom that you can see and work from there to the top. • If your arms are weak, rest your elbows on a table, chest of drawers or chair armrests while fastening buttons. • If you are a woman who doesn’t have a bra that hooks in front, consider getting one. (Frontfastening bras are available up to sizes E and F.) Sleep bras are normally front-fastening and give soft support and are useful while dressed in nightwear. They usually have a high back with wide straps. • Crop tops give little support but usually have wide straps and no fastenings. They can be put on over the head or held by the shoulder straps and pulled on over feet and legs, like pants. Getting dressed every day promotes self-esteem and a positive attitude. • Sports bras give different levels of support with full freedom of movement, and are often T-back or racer back. They are often put on over the head or over the feet and legs and pulled upwards, but are also available with front- and back-fastening. • Dress in front of a mirror. It will help you find the sleeves and match up buttons with buttonholes. • Allow plenty of time for dressing. • Ask for help. If necessary, a caregiver or family member should be able and willing to help. • Use a reacher, buttonhook or dressing stick for putting on clothing and reaching items in a closet. putting on pantyhose • While seated, cross the affected leg over the unaffected leg. Gather up the stocking for the affected leg in the unaffected hand all the way to the toe. Put the stocking over the toes and foot. Uncross the legs and pull the stocking to the knee. Gather the other stocking leg to the toes and put it over the toes of the unaffected leg and start pulling up the stocking. Stand up to pull pantyhose completely up or lie on the bed and roll side-to-side. (You may want to buy a size larger than normal. They go on easier. Or buy thigh-high nylons that use an elastic band to hold them in place. Be sure the band is not too tight – you don’t want it to interfere with the blood flow to your legs.) socks and shoes • Socks can be put on with one hand, but if you need help putting on socks, buy a sock stretcher. Using a larger sock also helps. • Socks will go on easier if you sprinkle a little cornstarch on the bottom of your feet first. • Wear shoes or slippers that fit snugly. Don’t walk around in stocking feet. • Several products are available for tying shoes, including elastic shoelaces. • Have a shoe repair shop alter the shoes by installing Velcro closures. • If using a brace, put the brace in the shoe first. Pick up the shoe by the toe and lay it down on the back of the brace. Step into the trough of the brace and slide the foot forward into the shoe. Hold the tongue out of the way. • Use a long-handle shoehorn. belts and pants • Put the belt on the skirt, slacks or dress before putting it on. • Rather than trying to pull pants on holding the waist in weak fingers, thrust the affected hand deep into the side pocket and pull up the pants. This allows the arm to hold the weight of the pants rather than the fingers. • Use the unaffected hand to tuck in the shirttails. • To close the waist, put the affected thumb through the last belt loop, then push against that to draw the waist closer together. (continued) January/February 2007 31 E V E RY D AY C o n n e c t i n g Yo u t o H e l p f u l I d e a s where to find clothing, assistive devices Know... Access Clothing Life With Ease 1-778-229-4235 (mobile) 1-800-966-5119 www.accessclothing.ca www.lifewithease.com THE WARNING SIGNS OF STROKE: • Sudden numbness or weakness of the face, arm or leg, especially on one side of the body Adaptive Clothing ActiveForever.com 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 1-800-422-2348 1-800-831-9099 • Sudden trouble seeing in one or both eyes www.professionalfit.com http://store.ablemedical.com Silvert’s Caregiver Products.com 1-800-387-7088 1-877-750-0376 www.silverts.com www.caregiverproducts.com • Sudden trouble walking, dizziness, loss of balance or coordination • Sudden, severe headache with no known cause (continued from page 29) Lucy O’Neil is caregiver for her husband, William O’Neil, who had a stroke in 2004 at age 60. Bill was an electrician and a proud member of International Brotherhood of Electrical Workers Local 35 for 40 years. In May 2004 Billy suffered a stroke – and I do mean suffer. Paralyzed on the right side, experiencing memory loss and aphasia, he went through rehab with various therapists who I believe are “walking angels.” His family came to cheer him on, and hope was in the air. Like many others coming out of rehab, Billy was encouraged by his progress, but as days became months, he began a downward emotional spiral. He withdrew emotionally and became very antisocial, angry and depressed. He seemed to lose all hope of further recovery. When our therapists suggested Moving On, Billy was in no mood to join, so I had to cajole him to attend in March 2005. Billy says, “As the session progressed with hard work and seemingly impossible challenges, I began to see things more clearly. To my surprise, there were many 32 January/February 2007 people far worse off than me, yet everyone seemed to have reason to smile and laugh. “Helping hands were extended to me, we laughed at ourselves, played music and sang crazy songs together. I listened to others as they shared their grief and anger. I think the difference with a program like Moving On is that it isn’t all about me, it’s about us and how we can contribute to the group while trying to improve ourselves.” I like that the program encourages caregivers to stay during the sessions. Indeed, I was greeted by other caregivers with much understanding and kindness. Caregivers are encouraged to contribute, and the therapists listen, knowing that we spend 24/7 with the aftermath of stroke. Billy has become more social, his speech is improving and he is – very slowly – gaining much-needed stamina. By sharing our vision and experiences, we hope that more communities will develop similar community-based exercise classes. 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CF D5H=9BHG K=H< ,-G9;A9BH 9@9J5H=CB 57IH9 AMC75F8=5@ =B:5F7H=CB H<9 F97CAA9B898 8CG9C:)%/#1=GA;CB7985=@M58A=B=GH9F98=B7CA6=B5H=CBK=H<5GD=F=BK=H<CFK=H< CIHH<FCA6C@MH=7G )%/#1A5M69=B=H=5H98K=H<CFK=H<CIH5@C58=B;8CG9A;K5GIG98 =B%+#-2G99!"#! )%/#175B6958A=B=GH9F98K=H<CFK=H<CIH:CC8 'C8CG5;958>IGHA9BH=GB979GG5FM:CF9@89F@MD5H=9BHGCFD5H=9BHGK=H<F9B5@8=G95G9 ,99 3151+)30)84)+636/?!7-+1)367;3):1659 =GHF=6IH986M F=GHC@&M9FG,EI=66,5BC:=)<5FA579IH=75@G)5FHB9FG<=D '9K2CF?'2 )%/#1R=G5F9;=GH9F98HF589A5F?C:,5BC:=,MBH<9@56C F=9:,IAA5FMC:)F9G7F=6=B;#B:CFA5H=CB+9J=G98I;IGH )%.!5 p YOU DON’T WANT ANOTHER HEART ATTACK OR ANOTHER STROKE TO SNEAK UP ON YOU. p WITHOUT 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). 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 some medicines including aspirin, the risk of bleeding 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. TALK TO YOUR DOCTOR ABOUT PLAVIX. For more information, visit www.plavix.com or call 1-888-355-1152 PROVEN TO HELP PROTECT FROM ANOTHER HEART ATTACK OR STROKE © 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 p PLAVIX OFFERS PROTECTION. 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. WITH PLAVIX