Having a stroke is a pretty dark hour and many of the changes that occur afterward, depending on your support system, can be dark. But it's up to each of us to reach for our inner light. On Saturday, I raced to the emergency room after what I now know was a stroke. After my weekly dance class, I suddenly had an extreme headache, felt really dizzy, weak, nauseous, and couldn't see. I tried to sit, but couldn't see a chair I knew was there. I thought if I could just relax long enough, I would arise and drive home to walk my dog.
A few dancers noticed me from behind, gave me air and water and asked if they should call 911. My strong mind replied, "No, I'll be fine". After who knows how long, I managed to get up to exit the building and walk toward my car. Someone yelled from behind, "you will be like a drunk driver driving home". I remember chuckling to myself, but advanced toward the car. As soon as I unlocked the door, 3 women from the class reached for my keys, directed me to the passenger seat and said they would drive me home. Then they said they were driving me to the ER and called my closest friend to meet us there. I curled on the passenger floor with my eyes shut, feeling weak and nauseous.
I told the medical personnel everything I could before projectile vomiting everywhere and falling to sleep. When I awoke after a urine and blood test, I was told I was dehydrated and to go home and rest. I can't remember much about the next few days other than lying on the sofa, but thank God my mother called on Monday. She couldn't understand anything I said and was on the next flight to see me. She took me to another hospital and I was admitted with a stroke in 3 parts of my brain. I was hospitalized for 6 days. It wasn't until I was in the hospital for a few days that I noticed my speech, balance, strength and vision were altered.
I arrived home with a walker, occupational therapist, physical therapist, speech therapist and daily medications in tow. My mother cooked for me, ran my bath water, walked the dog, etc. Each day I awoke believing I would go back to work, but after 2 weeks, I knew this was a longer process than I could imagine. I had to leave my job, my out-of-state home, friends and lifestyle to return home with my retired mother. As soon as I felt strong enough, I applied for social security and unemployment and was denied. This younger, active, vegetarian's life had now completely changed. As I try to rebuild my entire life, this site truly has provided comfort that a survivor, caregiver and medical professional understand. It's inspiring to see others who are conquering this and living through it as best as humanly possible. We will band together and work toward informing others about the complex nature of nuerology!
Cindy is shown here as the keynote speaker at the 2012 Caregiver Appreciation Luncheon in Myrtle Beach with Amy Edmunds.
My name is Cindy Geiger. I am a true testament that strokes can happen to anyone at any time. In the fall of 2010, I had five strokes with a variety of deficits including, but not limited to, the loss of use of my entire right side. I had no risk factors - no high blood pressure or high cholesterol. I was only 41 years old, was in good physical condition, didn't smoke and was not overweight. I had no reason to have strokes, but I did, and they literally came out of nowhere. There was inflammation in the blood vessels in my brain, but why? We still do not have those answers, and I live with a lot of fear because of it.
People need to be educated that strokes aren't necessarily a result of age or poor living, and they need to be educated about the symptoms. Luckily I wasn't alone, and my husband recognized what was happening right away because he knew the signs and symptoms of stroke. He knew the crucial thing to do was to get me to the hospital immediately. Time and expertise matter to a victim of stroke. There absolutely are things that can be done for strokes and the sooner they can be done, the better off for the patient.
My whole life has changed since my strokes. Before my strokes I felt somewhat invincible. Now I am aware that anything can happen. I am vulnerable and weak compared to where I used to be. I lost use of my left side with my first stroke and then with a third stroke lost the entire use of my right side. Then there were two more strokes. I know things can get worse and that more strokes can come. Each one always seems to take more away from me.
I have worked very hard and have benefitted from a lot of great therapy to regain use and function, but there are still many things that I can no longer do. I live with exhaustion, fatigue, frustration and pain. I am easily overwhelmed. I have lost so much independence. You cannot begin to imagine how hard living with a disability is until you are the person. You think you understand, but you simply can't. To look at your arm or your leg and with every ounce of strength and soul you tell it to move, but it just won't, is the saddest and scariest experience imaginable.
I am still in the midst of my own grieving and acceptance after my five strokes but I believe that as a stroke survivor, you have to come to the realization that you are more than what has happened to you. I must keep finding purpose in what I have been through and what I continue to endure.
A quote from Mahatma Gandhi says it better than I ever could with my whole story:
Strength does not come from winning. Your struggles develop your strengths. When you go through hardships and decide not to surrender, that is strength.
I will never forget the day my life changed forever. At the age of 22 I suffered a massive stroke or Cerebral Vascular Accident (CVA) on January 1, 2006, while I was home from school for Winter break. That morning I woke up completely paralyzed in the face and a feeling that I can only describe as my brain felt like it was too big for my skull. At first I thought I was in a deep sleep, so I laid there for a few minutes before I realized something was wrong. Not only was my face paralyzed, but my right side was weak. Luckily I have a high bed which allowed me to roll out, and I walked into my parent's room. My mom was sitting on the bed talking on the phone, and I looked at her and put my hands up near both sides of my head trying to tell her that my brain felt like it was swelling. My mom got off the phone and asked me, "Can you talk?", and I moved my head to signal no. She asked, "Can you open your mouth?", and again I motioned, no. Next, she yelled for my dad to come upstairs, and he asked me, "Do you think it is your heart?", and I motioned no to him as well. My parents realized I was having a stroke, so they immediately took me to the hospital. They could be at the hospital by the time an ambulance was able to get to the house. I hope students take advantage of Student Disability Services and not feel embarrassed about using them. They are here to help us be successful and if a professor is not willing to provide you with the appropriate disability accommodations, do not hesitate to return to disability services department for further help. Dr. Stewart went over and beyond to take care of any problem associated with my and each individual's needs. It is important to use these services because it is your future, and the staff of Student Disability Services would like to enable each individual to excel to the best of their ability and continue to have a successful career. As you can see, they helped me accomplish my goal of graduating from Clemson.
In order to complete my coursework on-time, my mom would sometimes come up and help me keep up. Tests that took my classmates 50 minutes took me 5 1/2 hours to complete because not only did I have to make sure I read the question correctly, I had to process what I read and then answer it; not to mention I was completely exhausted both mentally and physically afterwards. Aphasia is one of the most frustrating residual effects I suffer from because there are times where I can see the word or phrase, but I cannot say or even write the word and/or answer. The courses I had left to complete were in my major, which meant my classmates were the same in almost all of my classes. I had classmates that made fun of me because I could not remember their name yet they were in all of my classes, and I even asked and talked to them every day. I have been laughed at for saying or doing something that someone my age typically would not do. Ordering for example, I wanted to order two pieces of pizza and two cokes, but I did not realize I actually said, "may I have two packs of ketchup and two cokes please".
On May 8, 2009, I graduated from Clemson University with a Bachelor's of Science in Public Health Science in Pre-professional Health Studies, their Pre-med track. I will never forget that day because it was one of the best days of my life!
Even though I live with pain and struggle with something every day, I am extremely lucky that I am still alive and never suffered from depression. I definitely got and still get frustrated at times, but I have learned to be around people who are caring, happy, positive, who will always be there for you and thankful for having the opportunity to be alive.
Then, on Friday, September 17, 2010 I suffered another major stroke during my Cardiovascular Sonography clinical work. That morning I felt great; I had just cut my full-time hours because it was just too much, so I actually got rest. I felt the best I had in a long time.
This stroke basically intensified the residual effects I had from my first stroke. My aphasia, drop foot, reduced range of motion in my right arm and hand, thinking and memory problems, pain in addition to the other residual effects I suffer from. This time I knew what I was getting into if I returned to my school program, but I was determined I was going to finish the program and become a Cardiovascular Sonographer. After many hours of therapy, struggling with my schoolwork, enjoying applying what I learned in class at my clinical, working in an attempt to help pay a portion of my COBRA premium, and support from my family, friends, teachers and other sonographers, I graduated from Midland's Technical College on August 8, 2011 as a Cardiovascular Sonographer.
As a young stroke survivor, I can see and understand where both my generation and the population in general are ignorant on what a stroke is and how it can affect a person. Too many people still think one can be "too young to have a stroke, or Graves Disease, or even a pacemaker." Basically, it is a lack of public awareness about stroke and that it can happen to anyone at any age.
Governor Nikki Haley might as well have turned over the hourglass (or minute glass) for victims who suffer from a stroke, when time works against the victim. Stroke, the third leading cause of death in the United States and common in the Stroke Belt, 11 states where stroke rates are unusually high. Haley vetoed the "Stroke Prevention Act," a bill which would have the Department of Health and Environmental Control (DHEC) certify hospitals as legitimate stroke centers. As certified stroke centers, these hospitals would be improving the time and methods to aid stroke victims. Legislators overrode her veto but the bill lacks funding.
Haley said she vetoed the bill because the bill duplicates services provided by the state. If that's so, then why is South Carolina the Buckle of the Stroke Belt? She also said the goals of the bill can be met without the involvement of more government. It's understandable she doesn't want the government to be more involved, especially if that means tax dollars would be raised. But in this case, state government-regulated and funded protocols are one of the best solutions to this crisis!
In the defense of her veto, Haley said DHEC receives funding to develop rural acute care programs. However, some South Carolina counties continue to have a "load and go" system, where emergency medical services (EMS) operatives pick up a victim and take him or her to the hospital without having the proper training and medical items to identify and aid the distressed victim. This is most prevalent in the rural areas of South Carolina, where proper care centers are scarce. Especially in these situations, time is a major factor against the victim. And the more time that passes after a stroke, the greater chances of irreparable disability or death.
I won't go as far to say that Haley has unofficially signed the death warrants of future stroke victims. However, I will say that because she doesn't support the Stroke Prevention Act, she has undoubtedly kept South Carolina on the Buckle of the Stroke Belt. An increase in tax dollars to save lives won't damage her approval rating, but not fixing a growing medical crisis in the state will damage future generations. Furthermore, South Carolina's stroke victims will continue to needlessly experience permanent disabilities and impose avoidable financial burdens upon their families. In comparison, how much will the governor's veto save?
Life was good now. I was working for one of the biggest and best law firms in America, was in the shape of my life, ran marathons and just won a squash tournament which catapulted me to No. 7 in the US in my age group.
On this dreary November morning 2004, I got up and asked myself: "What shall I wear today? Yes, the blue suit," I thought before stepping into the bathtub to take my morning shower. Why am I so terribly dizzy? I better sit down. Fortunately, I did, because all of a sudden, I lose control over my body. My arms and legs shake profoundly, hitting the tub. Please, somebody help me! It hurts so much. Thank God, my wife is here. "Help me!" I want to shout, but out comes only an unintelligent noise.
My wife wears the panic on her face when she finds me. She tilts my head back. Now I can breathe again! This is unreal - I can neither move nor talk. Is this the end? Will I die now? No! I did not have the chance to tell my wife how much I love her! The ambulance arrives and puts me on a stretcher. I am given an injection and black out.
"We are sorry. Your husband will die," my wife is told in the hospital. She calls my parents in Germany and informs them that the doctors will try to keep me alive until they arrive. They book the next flight to Washington, D.C., funeral clothes in their suitcases.
The physicians make a last and risky attempt to save my life. Miraculously, they succeed and can dissolve the blood clot. "He will survive," the physician tells my wife," but he will be "locked-in." "It means that your husband will stay completely paralyzed and will not be able to speak again." "Oh, my God! He will be trapped in his body forever!"
"Locked-in syndrome" is a condition in which a patient is aware and awake but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for the eyes. Total locked-in syndrome is a version of locked-in syndrome where the eyes are paralyzed as well. It is the result of a brain stem lesion in which the ventral (anterior) part of the pons is damaged. The term for this disorder was coined by Fred Plum and Jerome Posner in 1966. In French, the common term is maladie de l'emmure` vivant, literally translated as "walled-in-alive disease"; in German, it is sometimes called Eingeschlossensein.
I wake up again in the hospital. My head is killing me. My wife asks if I am in pain. I blink "yes".I am given strong medication. What made her ask? Somehow she must have felt it. I love her!
Six weeks of paralysis pass. It feels like years! To be in hell cannot be worse.
Then - hooked up to various tubes - life flowed back into my body and soul. On Christmas Eve, I move my left foot about half an inch. Doctors and nurses are stunned. Another miracle - and hope for more. What follows is a long and intense therapy. After agonizing four months in the hospital, I return home, leaving the hospital on a walker and where I am - due to my condition - restricted to one room for one year without much contact to people. As I needed 24/7 care, my wife is forced to quit her job and take care of me.
My wife and I have to endure not only the tremendous physical limitations and insurmountable problems, but are further confronted with unbelievable mental stress and additionally financial hardship.
At times like this, it is incredible what a human body and mind can endure and it is crucial to have an advocate who was my incredibly magnificent superhuman wife and to have the support of family, in my case my parents who once again proved again that they are simply the best.
I was determined to overcome my surreal situation. I struggled every day relearning how to eat, speak, sit and walk. Take it day by day, flourish on humor and optimism, be stubborn and disciplined and above all do not "hope" it will be ok, but say to yourself that it WILL!
Almost seven years have passed since. First, wheelchair, then walker, hard work! Time flies when you are having fun! You, reading this and I have a huge advantage. We are still under 65, still young and through hard work, we will come back. We further see the important things in life, show more compassion and belong to the illustrious community of young stroke survivors. I now, walk with a cane, ride my trike and even go into the sea at the beach. My former life as an attorney, squash pro and top-ranking player has changed but I enjoy every day and am grateful for my rebirth.
To my fellow stroke survivors, I have this advice:
Always stay positive. Work on your recovery as mentioned before day by day! You can recover from a stroke! There is so much help and new gadgets* out there. The stroke made one mistake: It did not kill us. Now, we come back. For more information, useful tips and more of my story, please refer to my book entitled "The Yellow Ribbon" as well, hopefully coming out in 2012.
*Just to name a few stroke aides. For hand rehabilitation, I highly recommend http://www.saebo.com/. If your leg/foot is affected, i.e. you suffer from "drop foot", bioness.com has helped me tremendously. But also walkaide.com is a great, maybe an even better alternative. If you are in need of a walker, I absolutely need to name the "neXus III" from Dana Douglas. This company makes the best walker on the market. It is steady, comfortable with a seat and basket, collapsible, easy to maneuver, but above all its customer service is second to none. If all companies would be like that! Its website is danadouglas.com.
In the meantime, think of that.
In 1983, Rom Houben survived a near-fatal car crash and was diagnosed as being in a vegetative state. Nobody talked to him. 23 years later (!), with the help of modern brain imaging techniques and equipment, doctors were able to properly diagnose his condition as locked-in syndrome. Now he apparently communicates by typing into a keyboard with his right hand, though he does so via a facilitator who moves or helps him move his hand. Houben's case calls into question the current methods of diagnosing vegetative state and arguments against withholding care from such patients.
This case illustrates how incredibly fortunate I was. I belonged to the very auspicious less than 10% of "locked-in" patients who first, did not die and second, are well on the road to recovery. My life has been given back to me and I am making the most out of it. So, we "just" had a stroke! Let's go! If you want to contact me, my email is mrosenlehner@gmail.com.
It was a Wednesday afternoon, mid-November when I had a stroke that I was "too young" to have. I was forty years old. I'd just returned to my desk after an afternoon spent in business meetings. I stood at my desk while I picked up my voicemail. As I was dialing my access code, my right arm fell to my side. I looked at my hand, confused by it just hanging there. Try as I might, I could not make it go back to the phone.
It began to register that something was desperately wrong. Just about the time I decided to yell for help, I felt my face "fall". It was as if the right corner of my mouth was trying to dip down to my chin. Still, before becoming totally confused, I was able to mutter that I needed help.
I remember laying in the ambulance and listening to the paramedics talking to the ER. I remember everything. I heard everything - and understood everything - I just couldn't get all my thoughts out the way I wanted to.
The ER ran some tests (but come to find out, not all the tests that should have been run!). They looked at me like I was something they'd never seen before. And, one of the doctors got mad at me. He was hitting my right leg with his little mallet, checking my reflexes. My leg just laid there, not responding to his hits. "Relax your leg. You are not making this easy." Really? I'm not making this easy?
It wasn't long after that the same doctor released me from the ER. He sent me home - right hand paralyzed, left foot drooping with no reflexes in my right leg and with a crooked little smile on my face. A couple hours after my release from the ER, I had my annual appointment with my gynecologist. I still had hope that someone would help me. The doctor came into the room and was beside herself. "You've had a stroke." I told her the story of the last 16 hours and she got on the phone immediately. Within an hour, I had an MRI...which showed I'd had a stroke!
This November 17th will be the seventh anniversary of my stroke. I'm blessed. I've recovered. Within weeks, my hand started moving (my thumb was the most stubborn, waiting the longest to respond). After several months of rehab, I regained 85% of my strength in that hand. My balance was slow coming around but come around, it did. Today, if you know what to look for, you can tell I've had a stroke. My smile is still a bit crooked, once in awhile I stumble and my right foot still droops. All of these things are more pronounced when I'm tired.
Too young? Unfortunately, there is no such thing. It is my mission to make sure that everyone knows that.
As a social worker at Waccamaw Rehabilitation Center, one of my job responsibilities is to provide a discharge plan for patients. Many come to rehab after experiencing mild to severe strokes, ranging in age from 40 to 90+. Today, I am discharging a 45-year-old woman renamed Jo for this article.
Jo had a severe stroke several weeks ago. This patient is a single mom with two young children. Prior to her stroke, Jo was working full time, caring for her children and maintaining their home. During rehab stay, Jo worked three hours a day with a physical therapist, occupational therapist, and a speech therapist for more than a month. Despite her efforts, Jo continues to experience difficulty walking, slurred speech, and weakness in her left arm and hand.
For me, this discharge plan is especially challenging because the patient is young and resources are so limited. Sending Jo to a Skilled Nursing Facility (SNF) for further therapy is not an option because she wants to go home to be with her children. If she were to consent to a SNF placement, Jo would likely be one of the youngest patients with little in common with others.
None of these issues apply to older stroke patients who have grown children and fixed incomes. Further, Medicare pays SNF expenses for older patients, if needed. In contrast, such resources are scarce for young stroke patients.
Because Jo is now unemployed, she is unable to afford to have someone come into her home to help with the children, to prepare meals, to assist with housekeeping, or to help with her personal care. Despite her health insurance coverage through her previous employer, Jo finds her COBRA eligibility results in payments which are far too expensive for her new budget. Although she intends to apply for social security disability income, the process routinely takes months to complete.
Jo's children have also experienced tremendous loss. Their mom is no longer able to care for them as she did before the stroke. Ironically, they may now have to take care of her. Despite their young ages, they fear mom may never be the same. Where do I find help for them?
In the interim, there are many unanswered questions which warrant immediate resolution: How will she pay her bills? How will she make her home more accessible for her newly incurred disabilities? How will she resume her role as a parent? What does she do to meet her family's immediate needs?
Turning Misdiagnosis Into A Mission
Neurology is complicated, sharing with others isn't!
My Story... by Cindy Geiger
Meredith's Story
by Meredith Harper
Afterthoughts on Governor Nikki Haley's Veto
by T'ara Smith
The Yellow Ribbon
By Marcus E. Rosenlehner
My Story
by Charmi Schroeder
"You're too young to be having a stroke. We're sending you home."
From where I sit...
by Harriet Faris