Stroke

Mary Kay Ballasiotes, North Carolina

Mary Kay Ballasiotes has been advocating for children for over 15 years.  Her daughter, Michelle had a stroke before she was born and that moment changed both of their lives forever. Mary Kay’s advocacy days started in 2002 in Chicago where she founded the Childhood Stroke & Hemiplegia Connections of Illinois, simply because there was a need for it.  Before long, Mary Kay and her daughter were fixtures at Lobby Day.  At National Lobby Day, May 2006, Mary Kay spoke with the Vice President of the American Stroke Association (ASA) and told him about her daughter having a stroke before birth.  She learned that the VP had never heard of pediatric stroke. From that day on Mary Kay made it her mission to collaborate with the American Heart Association (AHA) and the ASA about pediatric stroke, and to raise awareness about it.

Over the years, Mary Kay and Michelle attended heart walks, lobby days, and were very vocal about pediatric stroke in each state they have lived in: Illinois, Georgia, and now North Carolina.

Making a difference in people’s lives is the most rewarding element of being part of advocacy.  Mary Kay and Michelle have attended many lobby days over the years, both national and state.  The experience never gets old to Mary Kay.  She loves seeing how her passion and effort can make a difference, and strongly feels that one person can make a difference!  In August 2010, Mary Kay and her family moved to North Carolina where she soon started working with Betsy Vetter, the AHA Director of Government Relations in the Mid-Atlantic Affiliate.  Mary Kay readily admits her love of working with Betsy.  She is one of the reasons Mary Kay is still volunteering and advocating with AHA.  Mary Kay feeds off Betsy’s passion and enthusiasm and feels that Betsy has a gift for working with volunteers and government officials.

Mary Kay is very proud of her daughter Michelle and the hard work that she has been doing right alongside her mother. While back in Chicago in 2007, Michelle was chosen to be one of the 12 “Faces of Cardiovascular Disease.”  Her image was captured on one of many large posters that were circulated around the United States for Heart Walks.  These posters are still being used today.  Because of Mary Kay and Michelle’s hard work, they were both featured in an ABC news article once again shedding light on pediatric stroke. In 2009, Michelle was honored with the Stroke Hero of the Year and received the National Youth Advocate of the Year award.

Mary Kay’s calling is to advocate for children. She feels that things happen for a reason. The stroke that Michelle suffered enabled both Michelle and Mary Kay to reach other families and make a difference in their lives and in the area of pediatric stroke.  Mary Kay does not have much free time, but when she does, she enjoys going out to lunch with friends and reading. 

One great memory Mary Kay has included that of her son, Alex.  While driving back from picking Alex up at college, he remarked how much he admires the work that she has done over the years.  The example that Mary Kay has provided has empowered him to pay it forward by getting involved in politics and leadership roles.   May Kay continues to advocate for children and wants everyone to know that one person can make a difference.

 

 

 Advocate interview provided by Blog Contributor Amanda Orfitelli.

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Leigh-Ann Weiss Pennsylvania

At the age of 34, I experienced a stroke. It was January 21, 2009 and I had the day off work and was excited to be watching the Presidential inauguration on TV. I was on the phone with my husband when I started having difficulty. I was trying to pick up a pen from my desk and just couldn’t make my hand work. Suddenly my speech became strange and slurred. I remember saying "I can't find my words" and becoming increasingly agitated.  Luckily my husband David recognized that something was terribly wrong…that I wasn’t just “stressed out”!

Dave thought that I might be having a heart attack because of the symptom with my arm.  He told me that he was going to hang up and call 911, and he instructed me to open the garage door so that in case I lost consciousness the EMS could get into the house. When the paramedics arrived, I could hear them pounding on the door. I dragged myself up the steps but had trouble walking and fumbled for what seemed like hours with the lock on the door.  The door flew open and several paramedics were in my face.  I could understand everything that they were saying to me but could not answer their questions.  I felt frustrated and filled with panic like I was trapped in my own body. The ambulance ride seemed to last forever, the sirens screaming in my ears.  I was disoriented and sleepy, barely able to keep my eyes open.

Upon my arrival at Mercy Hospital, I was officially diagnosed through at CT scan that showed my blood clot.  I was fortunate to receive tPA, the clot-busting drug, within 15 minutes of my critical window expiring and I was blessed to have minimal damage from the stroke. I am grateful to my husband’s quick-thinking, the skilled EMS team, doctors and nurses who saved my life…for not dismissing my diagnosis because of my age.  

The week after I was released from the hospital, I had dozed off in bed while watching television. When I woke up around midnight, I reached to turn off my reading lamp and realized that I couldn’t move my arm.  I nudged my husband and he checked me for the F.A.S.T signs of stroke.  My face was drooping on one side so he immediately took me to the hospital.  The doctors said that it was a transient ischemic attack (also known as a TIA or mini stroke). I was not in any high risk group for stroke and doctors cannot establish what caused my initial blot clot or the second episode.  I had recently given birth to my daughter and had a clean bill of health.  My family history is spotty at best but my neurologist suspects that my birth control and history of being a migraineur might be linked but no one can know for sure. It is frustrating not having a clear explanation of why the stroke/TIA happened.  My doctor took me off oral contraceptives and my migraine medication as precautions.

Since my stroke I now have difficulty handling multiple tasks simultaneously.  I also have some memory and concentration issues especially with patterns and calculations.  I have some minor aphasia which is more pronounced when I am tired or overwhelmed.  For the first 2 weeks of my recovery, I experienced severe migraine attacks almost everyday which was unbearable.  The migraines still occur less frequently but I have been able to manage them with a regime of supplements and watching my triggers.  I do have other manageable post-stroke symptoms including sensitivity to flourescent lighting, and anything with a strobing effect.  I find high pitched or loud noises especially mechanical noises difficult to bear and have to wear ear plugs often when working or attending any loud event.  I find it hard to do any aerobic or any inverted exercises as it feels like my head might explode. When I am at rest, I frequently experience a tingling in my head and face…it was difficult to get used to this feeling at first as it made me worry about the onset of another stroke.   I know that I am very fortunate not to have suffered any major physical limitations like paralysis or loss of vision.   I am so grateful to be able to function successfully on most days.

Volunteering for the American Heart Association and other organizations has helped me to regain my confidence.  Although I do fear having another stroke and know that I may never fully go back to where I was prior to the stroke, I also live every day with a renewed sense of purpose.  My stroke fundamentally changed my priorities to be more focused on the present and what really matters in my life. The experience brought me closer to my husband, friends and family members. Experiencing the stroke changed me in the sense that I now realize that this life is momentary…to not take it for granted.   My confidence in my abilities has wavered but I have also gained a greater sense of who I am. To my beautiful children I have pledged to find time for some fun in each day and to not wait for a “someday” to do special things together.  I am so very grateful and fortunate to be alive, active and able to work and enjoy my life. 

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Gordon, Oregon

I was a healthy, active husband and father of two with no risk factors for stroke. I played squash a couple of nights a week, took walks with my wife most evenings, and faithfully saw my doctor for annual check-ups. I was on the perfect path of health and fitness, and yet I still managed to suffer a massive stroke on my 51st birthday.  

The onset of my stroke presented as a vision problem, not the typical speech or coordination problems. Because of this anomaly, my condition was not recognized for hours. The cause was eventually discovered to be a bilateral carotid artery dissection that created blood clots, resulting in a devastating stroke.

My four-year journey of recovery so far has been a grueling test of faith, perseverance, and teamwork. With an amazing network of doctors, therapists, friends and family supporting me, I am working to overcome right-side paralysis, the loss of my memory, and my ability to speak. I remain optimistic about life and hope to inspire people see that good things can happen, even when one doesn't think it is possible.

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