Afterthoughts on Governor Nikki Haley's Veto by T'ara Smith
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?
"THE YELLOW RIBBON" by BY MARCUS E. ROSENLEHNER
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.
My Story by Charmi Schroeder
"You're too young to be having a stroke. We're sending you home."
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.