smallory

Baby and kitchen.

Cat looking through a fish bowl!

Dr. Doug Macpherson had his first stroke four years ago when he was 38. The morning prior to the stroke I had a severe chest pain for 15 to 20 seconds. I did not give much concern, because I ate healthy, walked 5 times a week and lifted weights 3 times a week. The morning after the chest pain, I awoke and preceded to get ready for work as normal. After breakfast my wife noticed I was highsteping which I had no idea. I turned to talk to my wife and collapsed on the floor. My wife and my neighbor loaded myself in the car and off to the hospital I went, this is when the fun started. In the emergency room the ER Doc knew something was wrong. He called neuro for a consult. After two hours neuro arrived. By then I was paralyzed on my left side. He acted like he did not believed my wife as she told him the situation. He decided to do a spinal tap. After one and half hours of trying to do a spinal he asked for help, the other Doc did it 2 minutes. On the third day in the hospital a CAT scan and a MRI were ran and they found the clot. Then they ran many tests, with no luck. They ran a fiber optic scope down my nose and went behind my heart no luck, also went to my carotid arteries and found my left side never had an artery. They did not do much more the next 2 days. I laid in bed and they would give me memory test. That is all they did oh what fun, because my memory was affected and the answers were all wrong. My wife told me later that one of the testers laughed at my weird answers. Upon being released the Doc said good luck we have no idea why you had a stroke. Then he said as he walked away you could have another stroke tomorrow, in a week or month, take care. I went to therapy for 6 months. By looking at me now you could not tell I had a stroke but what was affected was my memory, also a lack of get up and go. Three years later I had another stroke and went to a different hospital. The care was great. Unlike the first hospital, they prescribed blood thinners. Now I am on 6 different meds. I am unable to do my job because my memory is less then normal. So I do work that I can handle. The most important event now is to enjoy my wife and children. I enjoy life like it is my last day on earth. Head up, smile and say I will get though this I am a survivor.

On the sixth anniversary of his stroke Mike writes... In December 1996, while sitting at my desk at home in Germany at about 8:20PM and smoking what proved to be my last cigarette, my left hand went numb. I had no idea what was happening to me since I knew less that nothing about stroke. I then realized my dog hadn't been fed, so I went downstairs to the kitchen falling down the last third of the spiral staircase when my left leg went numb. I couldn't reach our doctor, so I called my neighbors, and they came over and called an ambulance, which took me to the local hospital. Since the local hospital didn't have a neurology department, a staff internist ordered the first of several CTs. It was determined that I had had a stroke. The next day I was transferred to the stroke clinic of a hospital about 20 miles away, where I was attached to a machine, which would slowly drip heparin into my arm for the next several weeks. I started PT almost immediately. The neighbors called mutual friends and explained what had happened, and that my wife was on a business trip to Nuremberg. The friends started calling hotels in Nuremberg until they found my wife who then hurried to the hospital. She also called my parents who were wintering in their Florida home. They flew home to Chicago to get some winter clothes and then flew to Germany to see me. My daughters, who were in Milan at the time, also came. Then after about five weeks in the hospital during which I had the pleasure of some very uncomfortable tests including several more CTs, an echocardiagram, an angiogram and an MRI, it was determined that I was ready to go to rehab. Application was made at one of the best rehabs in Germany at which I was accepted. In anticipation of this move, I was weaned from the heparin machine and given an oral anticoagulant named Marcumar. Coumidin, which is usually used in the US, in not that popular here. Then after a few days, the MRI detected a slight hemorrhage in my pareital lobe -- not uncommon when weaning from heparin to an oral anticoagulant -- so they decided to wait before transferring me to rehab. Then the day after the Superbowl in 1997, I was transferred to rehab where I spent several hours a day doing physical and occupational therapy. Finally in early April they determined that I was ready to go out into the world. So, I left rehab in mid-April and came home to daily bouts of PT (4x per week, 1x in a pool) and OT (1x per week). This rather massive infusion of therapy has taken me to the point that I have almost full control of my left arm, although the fine motor control of my left hand is less than ideal, and I can walk almost anywhere unaided, although not very elegantly. I'm now doing PT 4 times a week (no more pool), and despite the allegations of almost everyone in the stroke rehabilitation industry, I still feel that I have some room for improvement. I'm also able to drive a car with automatic transmission. I wouldn't have achieved anywhere near my current status were it not for the support of my wife, doctors, therapists, neighbors and friends.

My name is Debby. I am 54 years old and had an ischemic stroke on Memorial Day, 2000. I am lucky that I really do see improvement every day, thanks to some intensive rehab and the love and support of my family. My whole world changed that "holiday" weekend and in many ways for the better. I was just about to graduate college, with a degree in human services and my youngest was to graduate high school in June, it was finally MY TURN. I had my future all planned out and I was ready to see the world! WHAM!! Boy, did things change. Here I am, still in the small town I grew up in and always hated, dependent on my beautiful sister and kindest brother. I never realized before how blessed I really am. No longer do superficial things have any meaning at all and for the first time in my life, I really do "see" now. Hard as it's been sometimes, I really wouldn't change a thing now. I think God wanted me to "be still and listen. "God bless all of you stroke survivors, and know there was a reason things happen the way they do.

Hello here is my story. I'm glad I found your organization with people my age! Does anyone have a similar situation? It's hard to find someone with a similar yet, devastating situation. Here is my story: On July 29th, 1999 I remember having a bad headache. I saw a potential employer. He wanted me to work in his office a day a week. I told him I would consider it but I felt really weird today. We went looking for a gator and we came home and ate some KFC. I was told to lie down and sleep it off. I woke up late that night and wanted to sleep with my best friend Chris. She moved over and I told her I had a terrible headache. I remember seeing my family doctor on July 30. I told him it was weird but my peripheral vision would go in and out. His nurse helped me with my recovery greatly and I will never forget that. He then sent me to the hospital for a CAT scan. Dave, my wonderful boyfriend, drove me. He is still with me. He says I changed and I probably did. I can no longer handle people yelling me or each other and stress. I do not like to be rushed for anything. I remembered driving on Market Street, a fairly busy road where it's usually hard to find a parking spot, to see a neurologist. After he examined me, he said it was a new migraine. He gave me Immitrex and some samples to bring home. I figured I'd sleep it off. Well it turned out my vertebral artery dissected causing me to have a major stroke. I remember little bits and pieces of the Medical Center but not much. My Speech Therapist told me I would have amnesia and wouldn't remember a lot. I remember everything from my ride from the hospital in the ambulance to the Rehabilitation Center where I'd be for the next 3 months. I came home the day before Thanksgiving on a peg tube, weighing only 99 pounds. I was very weak. My rehab doctor, talked with my insurance and said because of my young age, 24, at the time of discharge, it would be better for my mind if I could sleep at home and be an outpatient 5 days a week, 8 hours a day. My Therapeutic Recreation Therapist got me into swimming and that's when I really learned how to walk again. I think the water is great for anyone. I even advocated it before City Hall on my 25th birthday. I feel the Rehab Center does wonders if you let them and yes I was tired but I would never give up. I remember going to rehab not being able to talk or walk. I still talk differently but if people take the time to hear they can understand. I can remember when I first swam it took all the energy I had to get out of the pool at our local YWCA and into the house. I'd be done for the night. Now it's just a part of my daily routine. I am now 26 years old and everything I do is therapy. When I walk our 2 dogs, Hansley and Haley, that's therapy. I still go swimming, now at our local YMCA. I have a hard time keeping my weight up (I bet everyone wishes they had that problem). I walk on a balance beam Dave made me and do exercises to further improve my balance and gate. I like to emboss and do needlepoint and that also helps.

Anne Kenyon at 50 and daughter.

Anne Kenyon at 40.

Anne Kenyon at 16.

My name is Irene Sharpham. I was severely aphasic due to a stroke in August 1990. I recovered well after 6 weeks in hospital doing speech-physiotherapy. I regained my use of my right leg and my right arm. I am able to write, think and read but my speech took a little longer. I was always healthy for 46 years. I had two children and I breezed through my pregnancies. I started to get really sick in May 1990. In 1990 the last part of the summer was extremely hot and humid. On a fateful day in August I woke up and I realized that I could not speak. I have never heard the term before "she had suffered a stroke". But I learned to live with that term. I suffered a severe hemorrhagic stroke due to secondary bacterial endocarditis that destroyed my aortic valve and further complicated with necessary replacement of open-heart surgery. It was a "Fool's disease" because it was so hard to diagnose. Blind faith in the doctors and nurses helped me to recover. But especially my husband, Doug, is the reason for my return to health and through the encouragement by speech and physiotherapists. I wrote a book on my stroke experience. It was as a personal therapy, rescuing my thoughts from despair and indwelling aphasia to turn it around to positive hope. Someone struggling with aphasia will see that the tunnel is long but the rewards are gratifying and personal. After 13 years, now I feel more at ease with my aphasia. I have come far from being speechless, and have regained the use of my arm and leg. It is not quite as dramatic and final. But I have never accepted the loss of speech. My speech now is not flowery rather straightforward, like to the point, or black and white. In the midst of my aphasia I always remember saying "Ihavetotellyousomanythings." It came out as a string of unconnected words. After saying that I was tired with the effort. That is the first time that I realized I would speak again. I can't shake the tiredness - I will learn to live with it because feeling tired personally for me is synonymous after the stroke with my heart ailment. I am not cured, far from it! After the stroke I have been locked in a disability, silent and not communicative, not by choice. I tried and I am still trying. I was plummeted into disability and old age before my time by my stroke. Now I have to take my time doing painstakingly small tasks, writing, speaking, thinking, and reading. My brain gets tired very easily. And I notice getting older the rate of slowness increases. I can't win but I am determined to not give in. I want to interact socially and speaking is the lifeline I wish to adopt. I am willing to learn all over again. But it eludes me. In the early days after the stroke I desperately wanted to be normal, plain, ordinary again. I did want to work again but it's not practicable. I miss being spontaneous, words slipping from my tongue. Now I realized that it's a pipe dream. I don't entertain that thought any more. It's a matter of adapting. I channeled my energies to new pursuits, swimming, Tai Chi, learning to play the piano, gardening, nature craft. A lot of my pursuits are lonely ones because I fear that people don't understand me. Some days I still have difficulty with accepting my stroke but there is no turning back. I am alive! I struggled on with the hope that some day I am going to get better. I am an eternal optimist! In 1993 I went to University of Michigan for 6 weeks of intensive speech therapy. I belong to a speech communication group in Halifax, Nova Scotia, Canada. I go to my speech group because it offers me support and sense of belonging but outside in the real world they all struggle to survive. They are all in the same boat as me. Before the stroke I took my communication skills for granted. It's a battle now. There is a program run by my group leader Linda Carey in Halifax (similar to Michigan) called InteRACT put on by Dalhousie University. The program started last year and does not run all year round only in May and in August. And I have been fortunate having a good man to love me. Read Irene's book.

The Greatest Strength Comes From Within

I am a 52-year-old stroke survivor, born in Wellington New Zealand. I grew up and went to school in Hawera in Taranaki. The eldest of seven children, I completed a drafting cadetship with the NZ Railways in Wanganui after leaving school. Then I worked for the Railways as an electrical draftsman in both NZ and in Queensland in Australia for a number of years and then at a multinational iron ore mining company in Western Australia. I traveled in Australia and Asia before settling back in Hamilton NZ in the late 1970's. Immediately prior to having two strokes I worked for twenty years as a shift supervisor for Carter Holt Harvey at their cardboard packaging manufacturing and printing plant in Hamilton which produced packaging for the Horticulture and Dairy and Meat processing industries. A survivor of two strokes, I currently I live in Hamilton. The first stroke was a major one caused by an intracerebral hemorrhage in March 1993 resulting in left side hemiplegia. The second was a small stroke in June 2000 caused by a clot. Following the first stroke (which happened while I was doing jury service at the Hamilton district court........would you believe) I spent 3 months in Waikato Hospital in the acute wards then in Rehab. I was not able to return to work and ended up on the invalids benefit a shock to the system going from earning over $40,000 a year plus medical benefits and superanuation and having company share purchase rights to about $10,000 on the benefit. It turned my life totally upside down. I decided to explore the Stroke Foundation New Zealand and what they had to offer. I have been involved with Stroke Foundation Hamilton since 1993, elected to the Stroke Foundation Waikato Committee in 1995 and elected Secretary in June 1996, and currently still serving in that position. I was appointed to the Management Committee of the Midland Regional Establishment Committee at its first meeting in Rotorua in February 1996 I served on that committee until the first AGM then I was nominated as the Hamilton City sub - regional Representative on the Midland Regional Committee for 1997 - 1998. I have been re-elected annually each year until 2002 currently serving on that committee as President. I was nominated as a Midland Representative for National Councillor of the Stroke Foundation of New Zealand Inc for 1997-1998, elected as national councillor, re-elected for 1998 - 1999 and currently serving on the National Council of the Stroke Foundation as an ex-officio member as one of the four Regional Presidents." So that's me, and where I came from and are now. I live independently in my own home and have done that since the first stroke in 1993, and treat everything as a challenge. Visit our New Zealand Stroke information web site http://www.stroke.org.nz.

Michael Roberts has recently written a few articles for the Stroke Network. This has been as much therapy for him as anything else. Last week, a stranger reminded him how lucky he is while he was waiting for a taxicab. The stranger correctly deduced that Michael had had a right hemisphere stroke from his gait and cramped left arm. She told him that many people who have that sort of stroke don't recover their speech for a long time Luckily for him, Michael's speech and language capabilities weren't long or permanently impaired. Michael is a poet and writer and is still hoping for a heavyweight title shot. Several friends in the Word Warriors, a multicultural writers group which Michael is a member of, visited him while he was in the rehabilitation unit at St. Joseph's Hospital. One, an English professor, was quick to note that Michael was still able to correct her grammar. That's the kind of hairpin he is. Michael is half Indian and half Green Beret. You have to know his father to appreciate the latter. Enough with the family tree. That could generate several other stories. Easily. Suffice to say, Michael was born in Milwaukee after a 20 hour labor on the hottest day of the year while his father was finishing jump school at Fort Benning. He is the second of ten children. He is a librarian by profession. His older brother is a cop. They both graduated from a small high school in Minocqua, Wisconsin Michael started college at UW-Madison in 1968. His brother returned to Milwaukee and started a family. His brother plays golf. Michael collects comic books. After an onerously long, undistinguished and colorful undergraduate career, he eventually earned a Bachelor of Arts General degree at UW Milwaukee. While in Madison , he did learn to love his wife Linda well enough to bicycle over mountains and through deserts with her. They did this on their honeymoon. It's easier than recovering from a stroke. It is no coincidence that Nixon resigned within a week of their arrival in DC. Naturally urban legends about Michael abound. All true. Michael and Linda have three children. After the last time that Michael recounted the kids adventures, a classmate from New Zealand exclaimed" Jesus! A family of bloody geniuses!! Michael accidentally wound up in Who's Who instead of dying in Vietnam. He owns the two dumbest dogs in the world. Here's a poem Michael wrote when he was in the hospital. He was 'lucky' and had a corner room with windows overlooking the city. <i>The View From Here Snow on the flat roof across the street tree in east window four paper fish above</i> Michael passed away August 2010.

I realize I am not the only one who has had this experience. I am 32. How did the time disappear? I spent the last 2 years in rehabilitation. Where did that time go? I want that time back so I could do what other people my age do when they are 28. I was an art therapist with children with cancers and blood disorders. On September 11, 2000, I had an aneurysm, had surgery, and went to ICU. I was in an induced coma. Everything was

January 5th, 2003, just into the New Year, brought a change to my life. I was sitting in the kitchen relaxing after supper. My daughter Kristin was downstairs, my wife Heather was having a bath, when all of a sudden the ceiling started to rotate and I knew that something was up. I yelled for my wife. Suddenly a sharp pain hit the right side of my body. I thought I'd had a heart attack. I thought to myself "why now" as my wife rushed to phone 911 and the medics came. The medics gave me a shot, carried me to an ambulance, and rushed me to the Health Sciences Centre. To say I was scared was an understatement. I was left with no feeling on my right side, double vision and some paralysis on my left. Basically at that time I thought life really "sucked". The doctors told me I'd had a stroke. My father died of a stroke so I knew this was really serious. They stabilized my condition. After a few tests the Doctor told me that in the next few days I would start therapies that would allow me to hopefully return to a somewhat normal life. I thought no problem; boy was I in for a surprise. It was agony everyday without the help of The Health Care Aids. When you have a stroke you have many hours to think "now what." How am I going to support my family? Will I work again? How will my wife and others see me now? Anxiety in abundance. I was transferred to the stroke rehab unit under the care of Dr. Daniels. She basically said: "Do your exercises, work hard everyday, and hopefully some feeling will come back and you'll walk again." I thought to myself, I'm going to do this come "hell or high water". For months I worked hard with the help of staff and my loved ones. I met other stroke survivors who were worse off than I was. I did lots of stuff that wasn't according to their protocol but the doctor let me "think outside the box." One day I was going past the desk and I picked up a pamphlet from the Stroke Recovery Association of Manitoba (SAM). I read it and asked Dr. Daniels about the organization which she highly recommended. When I got home on March 1st I phoned SAM and said I would come out to their office and see what they had to offer. They gave me a tour and explained their programs. After mulling it over I paid the fee and was told to come to the general meeting. At that time I also joined the support group "In Your Prime." I went to a general meeting and I was enlightened to say the least. Here was a small group struggling to carry on the good work. It reminded me of another support group I belonged to before and that was for sleep apnea. Some, after a stroke, experience an epiphany. I thought that I could help the organization in some way. I met with Marybeth Gilroy. She has a subtle way to get you to volunteer. With my past experiences with fund raising I felt this would be a perfect job for me. I have met a lot of great stroke members, each telling their stories with feeling and emotions. You look in their eyes and their eyes seem to tell their story. "You know." My wife Heather, a nurse, is very supportive and so are my daughter Kristin and all my "normal friends." I can't work any more because of the stroke so I have free time to give. So reflecting back to "why now," now was my time to reassess and move forward. I have good days and bad days but one thing I can say, I don't cry or laugh alone. Friends are there to pick me up and give me "a boot in the rear end " when I feel sorry for myself. My first grandchild Velorian makes all the family are proud, especially Grandpa. He gives me so much support that he doesn't even know about yet. I am looking forward to many "slow walks with Velorian." I hope I can keep up. I would like to thank you for taking time in your busy life to read this. I hope all members, staff and their loved ones have lots of good health and as you know that's more important than anything money can buy. Stars for Stroke Pictures, a program of Stroke Recovery Association of Manitoba Gunter passed away January 2010.

My professional background includes working as a physical therapist in acute care, rehabilitation, outpatient, and home care settings. Trained at the University of Kentucky as a physical therapist, I began my career as a PT working for Staffing Options and Solutions as a traveling therapist. While practicing, I continually questioned the theory and research underlying many of the interventions we utilize. These questions directed me toward the literature where my readings peaked my curiosity resulting in further questions and subsequently led me to the University of Florida where I am currently pursuing a doctoral degree in Rehabilitation Science. By studying the science of rehabilitation, I am becoming more skillful in conducting research projects aimed at improving the treatment of individuals with stroke. During my tenure at the University of Florida, I have been involved in numerous neurologically based research projects, mainly in the area of stroke. I have worked on a series of constraint-induced movement therapy (CIMT) studies designed to improve hand and arm function in stroke survivors. CIMT is a technique used mainly with the post-stroke population to increase the functional use of the neurologically weaker upper-extremity through training while restraining the lesser-involved upper-extremity. More than half of the 730,000 people a year who suffer from a cerebral vascular accident (CVA) have residual motor disability.1 However, as the general population continues to age over the next fifty years there are predictions that this number will double.2 The reduction of CVA related disability is essential because of the number of people who are affected by stroke. Currently, few traditional rehabilitation methods have been proven effective in the treatment of stroke victims.2 CIMT significantly improves functional use of the upper extremity in 20-25% of people with chronic stroke. However, the characteristics of this 25% are unknown. As researchers continue investigating this treatment, the link between theory and potential for clinical utilization will merge. There is limited evidence about who benefits most from this intervention. The goal of my research over the next year is to determine the greatest predictive factors of functional improvements following traditional CIMT, in other words, to determine who benefits most from CIMT. My long-term goals are to pursue a career as a researcher, educator, and clinician in an academic setting. Primarily, I am dedicated to the field of physical therapy and promoting patient care through improved scientifically based and clinically relevant physical therapy research and education. The area of research I plan to pursue is therapeutic interventions for neurologically impaired patients. As a novice researcher, I have had the opportunity to be involved in many ongoing research projects, grant writing, and research training. For example, locomotor training of patients with spinal cord injury, constraint-induced therapy for patients with stroke, and gait initiation studies. These experiences are providing me with a broad base upon which to build a foundation as a researcher in the rehabilitation field. I plan to continue to investigate the scientific basis of therapeutic intervention for people with stroke. Physical therapy is an integral part of health care, and in order for it to survive and prosper, it must be rooted in sound scientifically-based interventions. Therefore, clinically relevant research must progress so that we can improve patient care and enhance rehabilitation science. As a physical therapist first, my goal as a researcher will be to use my doctoral training to ask clinically relevant questions and seek scientifically based answers that are necessary to provide patients with the best possible care. As an educator I plan to instill in my students a link between the clinical and research world, emphasizing the need for scientifically based treatment and evaluation techniques. Students must learn both the psychomotor aspects of therapeutic interventions and the fundamental theoretical models and basic science mechanisms underlying why we choose to implement different therapeutic interventions. Both of these components are essential for a complete learning experience and a well-rounded physical therapist. As a teaching assistant at the University of Florida, I have taught and assisted teaching in lectures and labs along-side master educators and clinicians. In my doctoral program teaching course, I have learned about teaching styles, alternate methods of engaging a class in discussion, and improved means by which I can utilize assistive and interactive technology to ensure the best possible learning experience for students. I plan to incorporate these teaching methods into my plan for educating future physical therapists. Finally, because I am a physical therapist, I will always stay active in the clinic through supervising students, working directly with patients, performing in-services for clinicians, or providing specialty clinics. Involvement in the clinic will allow me to conduct clinically based, relevant, quality, scientific research in the area of movement dysfunction with the goal of improving therapeutic intervention for improved recovery of function. I believe rehabilitation will continue to improve and advance when supported by scientifically based research. As an educator, I plan to instill this philosophy in my students; as a researcher, I plan to pursue this philosophy to progress rehabilitation science. My experience thus far as a teaching assistant, researcher, and clinician, along with my future goals, are evidence of my commitment and intent to contribute to the science and advancement or rehabilitation literature and knowledge. 1Stineman, M. G., Maislin, G., Fiedler, R. C., & Granger, C. V. (1997). A prediction model for functional recovery in stroke. Stroke, 28, 550-556. 2 Taub, E., Uswatte, G., & Pidikiti, R. (1999). Constraint-induced movement therapy: A new family of techniques with broad application to physical rehabilitation - A clinical review. Journal of Rehabilitation and Development, 36, 237-251.

Gloria Kamenske

I am 54, and formerly a small business owner and golfing nut. In Feb. 2001 it happened, the bolt struck. One day I am working (my 18 hour days--6-7 week), trying to keep all of my six employees in a job. I went to bed after having a little dizziness (blood pressure I thought). I woke up at 6:00 am, time to go to work, right. I can not move. I had no pain during night. I had no time to adjust to inactivity. I had many business and golfing friends at the time. Many stopped by the hospital during the next few weeks. I was at a rehab center for a few months. Time goes by and so does the fast paced lifestyle. I used to boast that I was the best (fat man) on any given golf course ha! ha! Went from being 10 handicap to not even being able to pick up a club. I had to sell my business or lose it. I was too tired to run it. But the best news, is that it gave me time to stop and accept the LORD. Now I have time to make myself stronger in the savior (wouldn't trade places for any business or golfing award). I was told later how near to death I was. I had a massive left hemisphere stroke and had paralysis on right side, arm, leg, trunk and all. I had double vision and couldn't talk at first. The vision problem cleared up in a few days and thanks to a wonderful lady in speech therapy my speech has improved. I have problems still -- what I call a cloudy mind, and I substitute a lot of words. My despair has decreased. I also have limited walking with a cane. I kept moving my arm and hand even if there seemed to be no improvement. I kept at it and after a year of no obvious improvement, all movements have returned. Unfortunately, I still have spasticity in my leg, trunk, arm, and hand. I was able to get on the riding mower and cut my yard last week.

My name is Dave Hinds. I'm a 50-year-old man. I have been married for 28 great years to the love of my life, Nancy, and looking forward to the next 28. I had a major stroke in November 2000 that nearly took my life. It was a major bleed in the brain. I was in a coma on and off, for about two weeks. It was inoperable and the only thing they could do was to put a tube from my brain to my stomach so that if it ever happened again, the fluid buildup in my brain would enter the tube, pass through my stomach, and dissipate. The support and loving care I received, and still receive, from my wife, Nancy, Kyle, my nephew, and others, made all the difference to my physical and mental challenges. Thank god I have all of my cognitive skills intact, and I feel great but for the spasticity affecting my left arm and leg. I can't begin to explain how important a good support team is. I have the best in my wife, Nancy, and in my friends in the Worldwide Dreambuilders business management group. This team has helped my wife and I continue in our pursuit of our dreams and goals for our lives and nothing puts a smile on my face, and a fire under my feet like a dream. Nancy and my WWDB friends taught me that God never gives you more than you can bear and a winner is one that may fall a thousand times but always gets back up and keeps moving toward that goal and that dream. Thank you again, Nancy, for sticking by me through the peaks and valleys. I couldn't possibly love you more. And thank you Marshall and all my upline and downline for the example of excellence you set and walk and for allowing me to walk with you.

Angelo Leo Carlini, who had a brainstem stroke in December 1999, shares his experiences so far in diary form. Stroke Survivors will related to many of his struggles. We appreciate Angelo sharing this information with our readers and wish him luck in his continuing recovery. MEMOIRS OF A STROKE I suffered a brainstem stroke on the 23rd of December 1999. In this writing he shares the experience of the first 3 years post stroke. It was a bleed directly to the brain as a result of a weak blood vessel in my head and heightened blood pressure. I could feel it coming on as most of my energy drained and I slumped to the floor; I could not recover. My wife thought I was dying and she called our younger son, Aaron who lived about a mile away. Prior to this experience I did my "morning constitution" regimen: had already taken my daily shower and had just finished shaving. It was just after 6am. Someone called 911 and the emergency team was there shortly. I fought not to go to the hospital, grabbing the door jamb. But they managed to get me out to the ambulance. I should have died (more than 60% do) but my wife Deanna would not agree to remove my life support systems. The hospital I was first taken to did not have the necessary skills and equipment. The wait at the first hospital was about 7 hours. I thought I was going to be operated on, but the only operation I had was a tracheoscomy to insure that I did not choke on my own fluids. Although probably induced by the hospital medications (but possibly a result of the stroke) I was completely "out of it". I can remember thinking that I was at the top of the world and I was above the canopy that covers the sky. I could "flip" the "icons" contained in the canopy, and the reality of the world changed. I was in a one-person room. The nurses were very professional and interested. When I started physical therapy, Deanna was told that we would no longer be able to continue our insurance if we remained in Utah. So we flew to San Francisco, and then by ambulance to Vallejo. At this third location, I was still "out of it" and was placed in a four-person room. I participated in physical, speech, and occupational therapy. About an hour per day I was spent in physical therapy. Therapists were young people (mostly German) from all over the world. They were excellent and very committed. I had some difficulty in swallowing. Finally, I had to undergo some x-ray testing to watch me swallow. On my first weekend pass I went to where Deanna was staying. Aaron also came. She told him that she had some shrimp in the freezer; and she spelled it out (s-h-r-i-m-p) as if I were a child who could not spell; but I knew exactly what she had in the freezer and thanks to a food processor, I got some ground-up shrimp. Another experience during that same period was a ramp built by our son-in-law, Ryan, which was a bit too steep. Deanna tried wheeling Ryan up the ramp successfully, but I am quite a bit heavier; so, in the rain, Deanna attempted to wheel me down the ramp to the car to go to church. She got me successfully to the bottom (rather quickly). At the bottom, the wheelchair tipped over, dumping me out onto the wet concrete. When I got out of the car at the church, I had lost so much weight that my pants fell down around my ankles. Thank god, no one saw me except Deanna and the missionaries who came out to wheel me to the entry. The following was recorded at San Diego, 15 May 2002. Since leaving the "rehab" center at Vallejo, California and returning to Utah, I have experienced mouth sensations, which feel like my mouth is re-forming. I can taste with all parts of my mouth, not just my tongue. My left eye still looks across the line of sight of my right eye. Glasses (with a prism left lens), partially correct that. What frightens me most is my perception of reality vs. non-reality. Things, which I expect to be, often "move" from non-being to actuality. This is the case with reading; those words, which I do not expect, "change" to become those, which I do expect. When I look at anything, I'm not sure if I'm seeing reality or what I expect to see. Sometime in March 2000, I was released from Vallejo. We spent the next 6 weeks in Grass Valley, California at the home of our daughter, Julia and her husband, Ryan and their children, Michelle, Bradley, Jessica and Julianna. I had the services of a "home-visit" speech therapist, a "home-visit" physical therapist and a "home-visit" occupational therapist. I made some small amount of progress during this time. One day, I went boating and fishing with our son-in-law's brother. I was quite frightened that I might fall into the lake. Deanna did not pay Julia for our stay, but she was generous in other ways. She bought Julie and Ryan a new hide-a-bed couch and two new dressers; also, she bought a good deal of the food and did much of the cooking. She was also generous with the children. I took us out to dinner for Julie's birthday. We have since given our daughter and son-in-law our electric alternator (after paying-off their electric bill). So, in my mind, we did not "sponge" off of them; I wish we could have done more. Since coming home, more of my neurons have died (I guess) because of the mouth sensations (described earlier). I have made some definite improvement as I can now talk and with great caution walk. Although my short-term memory is quite poor, my mind seems to be returning.

My name is Robert M. (Mike) Sutton. Better known as slack. I stroked on Feb. 5th 1995. It was on a Sunday morning at about 6:00 a.m. I was using the bathroom and started to feel bad and sat down. I was setting on the commode and all of a sudden I was on the floor. The door was shut to the bathroom. My poodle dog was outside the door having a fit and woke my wife. She called an ambulance. They carried me to the emergency room where they ran tests, MRI etc. and didn't find anything, so they sent me home. Somehow my wife managed to get me in the house. I lay on the sofa all day and never got any better, so my wife called the ambulance again. They took me to the emergency room again. They decided to send me to Memphis, about 60 miles away for another MRI. When my wife arrived I was flailing my arms wildly and the doctor told my wife I had a stroke. During the next couple of days I had two brain surgeries where they removed about 40% of my cerebellum. My memory is kind of fuzzy after that. My wife says I spent some time in critical care and rehab. I was in the hospital and was starting to get depressed. My wife noticed this and told my Neuro that she was going to take me home. After I got home my condition improved. I had some people come to my home and give me PT and speech therapy. With the help of family and friends and God, I made it through. I go to the gym now 4 days a week and drive occasionally but not very often. I am pictured with my wife in the strokenetwork gallery.

I was a 46-year-old male physician, when I had my brainstem stroke. I was subsequently 'Locked In' for months; as many of you know, that means paralysis on both sides of the body, no speech or swallowing ability, and no facial muscle movement. The eyelids offered me my only voluntary movement. My cognitive ability was fine. The stroke arose from a dissection (tear) of the inner lining of my left vertebral artery. That tear arose from a simple whiplash two weeks before. I avoided an accident-a truck pulled out in front of me. I thought nothing of it, until, that afternoon an ache arose from the back of my neck. I assumed it was a whiplash, and treated myself over the next two weeks with heat and Advil. (You know-'Physician heal thyself'-yeah right!) A week prior to my stroke, I had a bout of severe vertigo, and ended up in Emergency. I have a problem with chronic fluid in my middle ear, and the Doc thought this was the probable cause of the vertigo. I mentioned the whiplash, and asked if he could see a connection; he couldn't and neither could I. But I felt uneasy and secretly wished for more investigation, but I was a patient now, so I kept my mouth shut. I continued to be a bit off-balance, despite having my ear drained, so one day while I was seeing my patients in hospital, I mentioned my symptoms to a neurologist friend of mine. He did a cursory exam and thought something wasn't quite right either. He thought we should get a CT scan. It probably wouldn't have shown anything, but in any case, we were not aware of the urgency, because three days later I had my stroke. In Emergency, bad luck continued to follow me. I lapsed into a coma just as I entered the department; if I had been awake, I could have told them I was having a stroke. Bad luck-the first CT scan was negative, because I was so deep in coma, my head shook, resulting in a poor picture. Hours went by while they watched blood results, and took other tests; hours my brainstem could ill afford, as it was being starved for blood and oxygen. After a few hours, a neurologist came, declared me locked in, and arranged an arteriogram, where upon tPA was given. It opened the artery 25% before it started to bleed, and they had to abandon the procedure. I as given Heparin, sent upstairs to ICU, but prognosis was poor: death was a definite possibility. I did awake-'locked in'-but alive. I spent ten months in rehabilitation. And as I'm writing this, it will be my fourth anniversary in May. I can eat everything now-I have to be careful, but I can eat! I speak a sort of 'Drunkenese', as though I've had a few, with low volume. My left arm is functional; my right spastic, but I can write with it. My trunk is spastic. After two years I finally took my first step! And it continues to improve. I still need a minimum assist with the walker, as my balance is not great. I wrote a book-"Locked In Locked Out"-to create something positive out of a negative situation. I try to point out to my fellow survivor that bad things happen-it isn't fair, but there is no fairness in this world. I try to convey to them, to accept, but never, ever, give up. Book review .

My name is Tony Boxer. I'm 56 years old. I'm a software engineer, and am (now) self-employed as a computer consultant. At the time of my stroke I was a Senior Staff Engineer at a disk drive manufacturing company. I also am a principal in a software company that has created software for Real Estate agents to use on handheld computers. I'm an optimist, and my personal philosophy is to make someone smile and laugh every day. I've had various medical issues most of my life. I've had a form of Reactive Arthritis called Reiters Syndrome since I was 17. It causes my immune system to periodically attack different joints and connective tissues. As a result, I have fairly little defense against infections. I also get migraine headaches, have a hiatial hernia, stomach ulcers, acid reflux disease, a torn retina in my left eye, and other things to make life interesting. In March of 2000 I was diagnosed with a brain tumor. That's a fairly long story, so if you're interested you can read it at http://www.anarchive.org/tony_b.htm. A quick synopsis: The tumor is pressing on my brainstem, and since I have a history of serious infection following surgery I chose to have my tumor treated by Fractionated Stereotactic Radiosurgery at Stanford University. The radiation is working because the tumor is dying. The tumor left me with impaired hearing and balance, but otherwise no serious side effects. Then, on October 10, 2001 I was at work when I got a slight headache on my left side and suddenly felt like I was drunk (and I don't drink). I had trouble speaking; my vision was impaired, and other typical signals of a stroke. Unfortunately, I didn't recognize the signs, so I got into my car and drove home. It was 4:30, so I had enough sense to not drive the freeway during rush hour, but the trip home was interesting. When I got home my wife called 911, and over my objections, off to the hospital I went. I was sent home at about 9:30 PM, having been told I had experienced a TIA. About three hours later, I began to sweat profusely and have uncontrollable spasms in my left arm and leg. I woke my wife and told her to get me back to the hospital. As we were walking across the parking lot, I collapsed and she had to drag me into the ER. A full-blown brainstem stroke was in progress. This was my introduction to the world of brainstem stroke survivors. I initially had very little use of my left side, including facial and speech issues. I had difficulty swallowing, major balance problems (I'm sure the tumor damage contributed) and incontinence problems. I was supposed to go to a rehabilitation hospital for 2 - 4 weeks of therapy, but I guess I'm an extremely lucky brainstem stroke survivor since I was sent home after two days because I could get out of bed and walk myself across the hospital room with a little support from the bed table. Since the stroke I have regained almost full use of my left side. Being ambidextrous probably helped quite a bit. I had to teach myself how to use my left hand again, and how to type. I still make mistakes typing, and sometimes experience "brain freeze" when I can't think of a word or remember something. You couldn't tell I am a stroke survivor by looking at me unless I am tired. Unfortunately, I get tired very easily now, so I take lots of naps during the day. I still need a cane to help with my balance but I'm working on not using it and can get around without it as long as there are things I can use for correcting my balance (like walls, chairs, cars, people, etc). I still have trouble swallowing, so have to dip my chin down when swallowing, and of course I have to control my fluid intake when I know I'm going to be away from home for any time. I think a positive attitude, a good sense of humor, and a refusal to give up has been what made my recovery a success.

My name is George Murray and I live in the Western Cape of South Africa near Stellenbosch, a university town and tourist attraction since it is the oldest village bar Cape Town. I was just over sixty years old on November 23, 2001. It was a beautiful summer morning and my first job of the day at 6 a.m. was to get milk from the farm about one mile away. Driving to the farm, having a chat with the dairy manager about the nice day, and back at home with the milk in the fridge. Waiting for the newspapers to arrive, it was time for a quick look-around and check-off Saturday chores to be done. At 8 a.m. I was off to get the papers and fresh bread some five miles away. On my way out of the shopping center with the papers and bread I felt ... queasy ... and waited for it to go away. I felt better and got in the car and on the way home felt even funnier and funnier, and about one mile from home I stopped the car with a feeling of " I just couldn't care less." Later that day, I woke up in the hospital. I was told I had suffered a stroke and everything was OK. I was not exactly sure what a stroke was, but I couldn't care less and dropped off to sleep again. Sleeping is about all I remember of that last week of November. The first week in December I started to surface and I was told what had happened to me, not fully realizing exactly the implications of what I lost. If I had realized then what it means to lose one's right leg, right arm and hand, and half of one's speech capacity, I would probably have done something drastic. Fortunately, my damage was down-played and I was led to believe the damage was reversible, but that I would require serious rehabilitation in terms of muscle tone and speech training. The schedule was six months rehab plus another two months for obtaining a new driver's license. Sounded like a piece of cake... For the first few weeks at home I had a physio and a speech therapist. I did not even bother to learn left-handed writing -- surely right-handed retraining will be easier with a hand that is used to writing ...? And surely getting special clothes or gadgets for a stroke patient is not necessary-rehab will be done after six months. I exercised my leg and practiced my arm by picking things up. I became skillful in saying "bue moe" and "pooi voo". It wasn't fun, but anyone can suffer anything for six months if restoration is anything to go by. This status quo went on until June - July 2002 when I could see no improvement in my arm or leg. By now I had realized stroke restoration is not a viable goal. By reading library books about exactly what happened and what lies in my footpath on the road ahead, it became clear that I was laboring under a misconception: There is no reversal. Period. There is no second chance. Period. Furthermore, my right ankle was still giving trouble, and I spent most of my waking hours in my arm chair-moving about has become too painful. During this time suicide became foremost and uppermost in my thoughts: My wife and children don't really need me any more-I'll be missed for a week or so but life goes on. Also, I couldn't complain-I have had 60 years of fun and tears of which 35 years were happily married. At this stage the psychologist prescribed anti-depressant tablets which had a positive effect. This past year had gone by without my joining any stroke companion groups (with the exception of StrokeNet) because I still couldn't believe it and I still could not relate something life-threatening happened to me-my right leg also made for error-prone limping with the cane for support. By the time of writing, I have crossed the bridge of accepting my stroke as being with me for the rest of my life, and we have (at last!) located a doctor who is hopeful about fixing my right ankle. So its another three weeks in hospital followed by more rehab, and then, who knows... walking without a cane, getting a drivers' license and doing things! Looking back over what I have said, it is not so much a biography of my life, but an account of my stroke just less than one year ago and (with few exceptions) the battles with medics and paramedic players. It was not a very good year, but stay tuned in for more information on how I am winning the game against the cards dealt to me. My address is georglm@iafrica.com for mail-letters will be answered.

I just recently had my first stroke. The week of May 26th I seemed to be feeling extremely tired and very stressed. I could feel pressure at the base of my neck and my left eye. I would come home from my office and just want to go to bed and try to sleep. I have been using a C-Pap machine for sleeping for over eight months and was also wondering if maybe I might need some adjustments for better rest. My wife had been out of town for a speaking engagement and was coming home on Sunday June 1st. She called me to let me know that she had decided to come home on Saturday instead and cut her meeting short which turned out to maybe a lifesaver for me. On Saturday May 31, 2003 I woke to find that I was extremely tired with pain in my left eye and a bad headache. My wife returned home around 4pm and we had a nice dinner at home. I cooked on the grill and we enjoyed the evening. Some good friends called around 8pm and we both spoke to them but I do not remember the conversation or even talking with them. I still had my headache and my wife thought that I was rather short and very quiet. I told her around 10pm that I was going inside to take a shower. After about ten minutes she came in to check on me and found me lying face down in the dressing area outside the shower room. I had taken a shower and walked into the dressing area where she found me. She immediately called 911 for assistance. She could see that the left side of my face was drawn and I was unconscious. She also called my son who lives in the area. Both my wife and my son work for Saint-Luke's Hospital here in the Kansas City area. The hospital is one of eleven nationwide that has the Stroke Team and the TPA procedure. I also have had a pacemaker for the past six years and they both wondered if it could be a combination of stroke and heart attack. My wife has medical schooling and is a director at the hospital and my son manages a division of the hospital so both have medical knowledge. I was taken to Saint-Luke's and the Stroke Team was able to administer the TPA procedure. I remained unconscious for almost 28 hours and the stroke was at the base of my brain stem, which they informed my family had a 80% mortality rate unless treated. After gaining consciousness I had weakness on the left side of my body both with my arm and leg. I left the hospital in four days time and began physical therapy both in the home and outpatient. After eight weeks of therapy I was able to return to half days at my office and have recovered almost 90%. I still get very tired and come home around 3:30pm for a nap of around 2 hours daily. I use a cane if I am going to be out for a long period only for support as needed. Otherwise you would never know that I had a stroke. I am doing well and should be back to 100% within the next four or five months. I owe my recovery to the quick thinking of my family and the fact that I was taken to Saint-Luke's Hospital and received the TPA treatment. I am trying to make everyone in my office as well as my friends the signs and awareness of stroke and the quick action necessary to reverse the effects if medical attention is received within the first few hours. I still have fears of the possibility of another stroke and know that this is common. I am thankful for the stroke network and being able to talk and share with others. This is most important in the complete healing process.