02 Apr Stroke Empowerment – Beyond Awareness!
Stroke Empowerment – Beyond Awareness!
By LaVasha M. Cain-Lobbins
The Journey Begins
Working as a cook at a local country club, Maxine Johnson, my grandmother, put 100 percent into her job but that same level of energy was given to her family as well. She gave all of herself so her family could have a better life. It seemed like she was in the family legacy business. For me, I became a member of her legacy later on in life as one of her many grandchildren. I remember it all. The holidays were those very special times we all surround that long dark wood dinner table and laugh, joke and enjoy all the food she would prepare for us.
We had great times and it gave her great pride to see all of her family in one place. But then, things began to change…
When I was around 9 years old, I remember going to the pharmacy with my grandmother to get blood pressure medicine. At the time I had no idea what that meant, other than it would help keep her calm when she was stressed. I remember sometimes she didn’t make it to the drugstore in time, but she would take her medication as soon as she could. Regardless of that, her family history of blood pressure made it difficult for her to keep it regulated.
All I knew was that I loved my grandmother. She helped raise me and shape my perceptive on my values system. She taught me the sense of caring for people and the importance of cultivating a strong work ethic.
It was 1990 by then I was in high school, when my mom and I received the phone call that my grandmother had a stroke. To say I was devastated would be an understatement. We immediately arranged a flight from Jackson, Michigan to Pine Bluff, Arkansas to see her in the hospital. I remember walking in the room. She looked like she had lost about 50 pounds. Her left arm was paralyzed, and she held it close to the side of her body.
After witnessing how the stroke had my grandmother a weaker version of herself, I found out that her irregular blood pressure coupled with her long and stressful workday history, might have been a contributor to this disease. Furthermore, according to the American Stroke Association, African Americans are twice as likely to die from a stroke. My heart just sunk to the ground and tears would not stop falling. I had never known my grandmother to ever miss a day of work, let alone fall sick.
The next five years were not the same for my grandmother. She no longer worked at the country club because she did not have a fully functioning left hand, which was especially heartbreaking because she really enjoyed cooking and baking. Then, on April 23, 1995, she passed away at a young 63 years of age. She would have been 82 years old today, if she did not suffer the effects of a stroke.
When my grandmother had a stroke, it had been the first time I had ever heard about the disease. After she died, I wished I had known more about the signs of stroke, the different medical technologies that were available and the innovative approaches that would have yielded a more favorable recovery.
Another Shocking Experience
Imagine an 11-year-old coming home from school on a nice fall day, proceeds to ring the doorbell because he forgot his house key. No answer, but in the open window hears his baby sister crying. So, he goes to the neighbor’s house. She is not home. Then, he goes to the other neighbor and asks for help. How overwhelming for an 11 year old to crawl through a window to find his young 36 year old mother on the bedroom floor non- responsive. (Via an interview with her son, LaLeroy Hampton, now 34 years old)
It happened again. While we were managing the aftermath of my grandmother’s stroke, another one hit my dear aunt Pat.
This time it was even more personal. I remember when I was a teenager, I would spend the summers with my Aunt Pat and her 10-year-old son in Flint, Mich. Aunt Pat was a free-spirited person and loved living life. Every Sunday, we went to the Metropolitan Baptist Church to watch Aunt Pat sing alto in the choir. Everyone just loved her outgoing personality and joking nature. She would always get invitations from friends to have dinner with them after church. She was the life of the party.
Additionally, Aunt Pat was a fashion queen. She had passion and a creative mind for designing clothes. She also had quite the wardrobe herself. My Aunt Pat was known as the local seamstress. She would burn the midnight oil creating stunning dresses. I remember helping her by cutting patterns for wedding, prom dresses, and everything else. She was a perfectionist and her clients where always happy with the final product.
Aunt Pat was a mother of two boys and would do anything to make sure they were safe and loved. At the age of 36, she found out she was pregnant. Although it was a surprise, she was absolutely thrilled to be having the little girl she always wanted. Before the baby was born, Aunt Pat was already thinking of dress designs for her. Her daughter Alexandra was born on July 9, 1992. This was such a joy to her. I learned a lot about life from my Aunt Pat. She reminded me that I should always make sure I did my best no matter what path I traveled.
Then, the road became harder for her. Less than two months later after the birth of Alexandra, my mom received a phone call that we needed to immediately drive to Flint because Aunt Pat was in the hospital. At the time, all we knew was that my little cousin came home from school and found Aunt Pat nonresponsive. I remember driving down the highway in disbelief. Was this happening all over again? When we arrived at the Flint hospital emergency room, there was my Aunt Pat lying there unconscious and being pumped with contrast in order for them to take x-rays and scans. Then, they moved her to the ICU. Still, we had no clear answers to what had happened to her. While we waited, we went to her house to check on things. I remember for some strange reason I decided to check her medicine cabinet. The shelves were filled with various meds. I took all the bottles she had in the cabinet and brought them back to the hospital in hopes that this gesture would help in some way. When we got back to the hospital, I gave the medicines to the physician and he was stunned that I would know to do that. To this day I am not sure why I did that. It just seemed like a logical thing to do at that time.
Hours later the Neurologist told us that she had had a stroke. I couldn’t believe it! She was so young! Then, the truth began to unravel. About ten years prior, Aunt Pat had an incident involving her blood vessels narrower in her legs. Additionally, for many years she had been a smoker. So, imagined all those prior factors coupled with recently delivery of a baby. There was no way her body could have prevented the stroke. Unfortunately, the after effects of the stroke prevented her from ever walking again.
Furthermore, her speech was badly impaired. She spent the next few years recovering in a nursing home in Arkansas. Over the years, she showed some improvements in her speaking abilities. It was good to hear her speak more freely and have conversations. On July 26, 1996, Patricia Ann Johnson, my dear aunt, passed away at 40 years of age missing the opportunity to explore the second half of her life. She would have been 58 years old today if she didn’t have a stroke.
After her death, all I could think about was strokes. Could this have been prevented? Did the physician tell her she was at risk of having a stroke? Was Aunt Pat at the best hospital to get the care she needed? All these questions and more ran through my mind for years. What I know now is that being aware of where the nearest stroke center is in your area is a key to your outcome from stroke. In addition, getting to the hospital within 5 hrs via the onsite of stroke symptoms to get TPA-also known as “Clot blusters” will significantly reduce your chance of disabilities.
There were many ways to reduce my grandmother’s and aunt’s chances of disabilities. Although I cannot fix the past, these two heartbreaking moments have changed the direction of my life forever.
Education at a Higher Level
My aunt Pat and grandmother’s stroke episodes lingered with me throughout the years. A testament to that was when I was writing my application for graduate school two years ago. I revisited this topic and decided to focus my Masters in education with an emphasis on training and development for adult learners. Many of my projects were intentionally around the aspects of making sure patients received the information to make sound healthcare decisions for themselves and family members.
Attending graduate school at a research-centered university provided me with many opportunities to interact with people working in the medical/health field. I was able to read articles/publications on medical education and find answers to many of my questions. Additionally, this experience made me thirst even more for knowledge about my own family stroke history and provided me with the courage that I needed to venture out to become a change agent for stroke advocacy.
Later in graduate school, I had the privilege to work with a major medical device company. My role was to design a training program to help their employees better understand a recently added Cardiovascular division. I recall sitting in on a education session with cardiovascular physicians and surgeons. It was fascinating because normally I participated in many programs from a patient’s point of view but not many from physicians. I got to hear all the detailed discussions about their patient’s clinical cases, the debates on various surgical techniques, and observe the hands on training via medical device simulations and technologies. This made me think of why are patients missing from this experience? This was my ah-ha moment!
The Creation of Passion
Over the past 10 years I had planned/consulted on many events and community programs with the American Diabetes Association, American Heart Association-Stroke campaign, NAACP-Health Initiatives-Community Health Screenings, and Mayo Clinic- MOA project. Throughout those moments, I never made the connection between how different training platforms catered to physicians and missed the opportunity to include patient interaction. By having all the exposure to associations, medical device/pharmaceutical companies, and community health, I became more passionate about finding ways to help patients become their own stroke health advocate. Since 2009, I have had my own healthcare based training and events consulting business. I now wanted to create a program specific to training physicians along with patients about stroke health in a face-to-face event environment.
On April 23, 2013, I officially launched “Fight Stroke Now,” a patient advocacy program commissioned to do more than just educating patients but empowering them through hands-on training, assessments, medical technologies knowledge and transforming how they communicate with their physician. The goal is to increase their stroke health IQ before, during, and after any medical episode to reduce their chances of disabilities. According to the CDC, stroke is the leading cause of long-term disability. My hope is that we all can maximize and extend out our lives as far as possible and avoid the effects of strokes. We have a legacy to create and I want all of us to experience its creation.
If you were inspired by this story or interested in learning more, please like us on our Facebook site today at facebook.com/FightStrokeNow or email us at firstname.lastname@example.org. Give your comments on this article or post your own stories as we build up to our “Fight Stroke Now” signature event in summer 2014.