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“I believe stroke diagnosis in a younger population is definitely stigmatised”

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In the first of a three-part series on stroke survivor Garrett Mendez, who was only 19 years old when he had a stroke, we speak with Garrett himself on his survival story.

SR: Could you give us an introduction to yourself and your life pre-stroke?

I am currently 36 years old. I live in Trumbull, Connecticut. Life pre stroke I was very athletic. For example, I played baseball, golf, and ice hockey in my younger years. I attended a private high school named Norte Dame of Fairfield because they have a competitive hockey team that I wanted to compete on. I ended up playing on Notre Dame’s varsity ice hockey from the time I was a freshman. During my sophomore year of high school Notre Dame started a varsity lacrosse team, which I made.

After fours years I graduated and I was looking forward to begging my college years at Western New England College in Springfield, Massachusetts. At college I continued my ice hockey career. However, one game I slid on the ice for a hockey puck and ended up colliding headfirst with the boards. I was wearing a helmet and I was able to skate off the ice where the trainer examined me and cleared me to return to playing in the game. 

What can you remember about your stroke? What could you feel?

My stroke occurred when I was sleeping during the night. I was fully cognitively aware, so I remember everything. I didn’t know what had happened at the time, I did not experience any pain. However, leading up to my stroke I was vomiting, I had a fever, and my knees felt weak like jelly. I went to bed figuring I had a flu and in the morning I would feel better.

That night I remember falling out of bed and I tried to get up off the floor to get myself back in bed. I could not move or make any noise. I attributed my lack of strength to being sick and I must have been exhausted and closed my eyes. At this point I now see I was not thinking clearly so another theory I have is I could have just passed out when I was lying on the floor from exhaustion. 

What was your recovery process like?

I ended up in the intensive care unit with locked in syndrome. I was fully cognisant, but I could not move, I had double vision, and I could not speak or swallow. After being in the ICU for 3 weeks my vitals became more stable and I was transferred to Gaylord Specialty Hospital in Wallingford, Connecticut. At Gaylord I was still locked in, but with the help of various therapies I received I began to break through my locked in syndrome slowly. I started with physical, occupational, and speech therapy five times a week.

On the weekend I would typically do exercises with my mother or father in the therapeutic gym. Towards the end of my stay at Gaylord I began pool therapy 3-4 times a week. I was a big fan of the pool and I always tell patients to ask their doctor or therapist if they are proper candidates for pool therapy. The weightless environment of the pool gave me the ability to move more without the constraint of gravity, but it provided me with the support and tension to exercise my muscles too. I always say having access to pool therapy really helped facilitate my recovery to the next steps because of the freedom of movement my body now had in the pool that it had lacked thus far. I left Gaylord walking with the support of a walker, eating food, and limited speech after about 3 weeks at 19 years old and returned home with my very supportive parents. I had to adjust to life and continue to heal where I progressed with outpatient therapy.

How has stroke affected your everyday life?

My stroke left me with some residual effects that can complicate my daily life. For example, my right side is weaker than my left side. I had to relearn to write lefty, which I have learned, but it is slower than average to write on paper. My right arm has some function, and I use it to the best of my abilities.

However, my right arm lacks fine motor control and is plagued with spastic tight muscles that react involuntarily to my emotions, weather, startles, and my amount of energy. Typing with two hands I can do, but it is slower and difficult. I can lift objects with both hands above my head. My left arm can lift above my head and have full fine motor use of my fingers, but if I try to lift above my head with my right arm my tight muscles take over and make it difficult to use my right hand. I have had to compensate the best I can so my physical complications are not a constant struggle, but sometimes it can be out of my control.

My right leg is identical, but because I am constantly weight bearing on my right leg my spasticity is better but not by much. I have to wear a brace of my right leg because of a condition called drop foot. My right ankle does not work, and the brace helps to support my right ankle in a neutral position so I do not trip on my toes when I walk. 

What do you do now?

At 36 years old, I just graduated from Sacred Heart University with a bachelor’s degree in psychology. Now I am searching for a job, and I have been flirting with the idea of pursuing a master’s degree. I try to work out with a combination of cardio and weight training at least 5-6 days a week. My older sister and brother in law have 2 boys who I love to spend time with. I have learned a lot about my abilities through them. They have shown me that I am more capable than I realise or give myself credit for.

When it was warm, I play golf with my father and my friends. Recently my oldest nephew is starting to learn to play golf, which is awesome. I am a volunteer at Gaylord hospital in a few areas. A particular role as a volunteer that is near and dear to my heart is as a peer mentor at Gaylord Hospital. This is a program that only former patients of Gaylord Hospital can volunteer in. The program allows me to speak to current patients privately regarding various aspects of their rehabilitation. I have found this to be a therapeutic experience for me and I hope this resonates with patients too.

Do you think there is a stigma against young people and stroke?

Yes 100%, for example, my first neurologist who was assigned to my case in ICU took an MRI of my brain. The radiologists could see I suffered stroke from a view of the underlying structural damage to my brain tissue in the report. However, the neurologist saw the same report and disagreed with the radiologists claiming 19-year-olds do not have strokes.

He believed I had a severe case of encephalitis and he proceeded to put me on a treatment of steroids. Steroids are a vasoconstrictor, and I am assuming are bad for someone who had a stroke because you want dilated vessels not constricted blood flow. So, the fact I was so young was a factor in his misdiagnosis.

Now, I wonder if that misdiagnosis and subsequent mistreatment of steroids did more harm. If I had been correctly diagnosed initially maybe my outcome would have been different. This is why I believe stroke diagnosis in a younger population is definitely stigmatised, overlooked, and easily dismissed. In sports all over the world kids are bigger and faster, resulting they can do increased damage inadvertently to other kids than previously believed.  

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