My Story of Striving in the Post-Stroke World
When most people think of stroke, they think of it happening to people over 50. People are absolutely shocked when I tell them that it can happen at any age. For example, I had my stroke during childhood, and in the beginning, I was very debilitated. It was an uphill battle filled with many twists and turns, but I was able to make it from being a debilitated child to being a fully functioning adult. I am married and have two children and a successful career. The career that I chose is physical therapy. This allows me to integrate my personal stroke rehab experience with my PT knowledge and clinical experience. I believe that makes me better at helping my clients improve their functional abilities.
How was I able to achieve this level of success? Well, it took open-mindedness, curiosity, willpower, perseverance, determination, research, and a lot of life experience. It also required the guidance of therapists, teachers, friends, colleagues, people with disabilities and my loving family. With their help and my determination, I was able to overcome many obstacles.
I was 6 years old when I had my stroke back on January 17, 1989. I had a benign brain tumor that was a birth defect. When I was 4, my mom took me to the local doctor who determined that I was allergic to milk without anything more than superficial diagnostic observation. By the time I was 5, the tumor was the size of a golf ball and was connected to my left middle cerebral artery. I was having seizures that were getting worse and worse. In the beginning, they were just daydreaming spells, but they gradually became more involved. When I was 5, I would be playing with my older brother when all of the sudden, I would go into a trance. I would then proceed to walk toward my mother and sit in her lap, stand by her side, or walk in circles for a minute or two. She would frantically try to get me to respond during that time, but I could not answer or I would answer in incoherent babble. I would then proceed to walk toward the bathroom, vomit and collapse. Allergic to milk, right.
My parents decided to get a second, third and even fourth opinion to make sure the real diagnosis was found and sound. When the tumor diagnosis was confirmed at UMass Medical via CT scan and MRI, I was sent to Boston Children’s Hospital for surgery. Anyone who knows arteries knows how fragile they are, especially when a tumor has to be extruded off of one. Thus, when the tumor was surgically extruded, my left middle cerebral artery hemorrhaged, and I had a stroke.
Although I don’t remember this, when I left the OR, I stared up at my parents and the surgeon who had just saved my life and said, “I... hhate... yoou.” He smiled at my parents and said, “No big deal, I get that all the time.” He was a doctor with a great sense of humor, along with just being a great doctor, because he saved my life.
My affected right side was totally paralyzed and flaccid after the operation. I could not even support my own posture to sit in a regular wheelchair. They ended up having to put me into a special wheelchair that had me in prone position but propped up. On top of that, I had double vision and anomic aphasia.
Characteristics of anomic aphasia include fluent speech complicated by trouble using correct names for people, places or things; speaking hesitantly; difficulty finding words may be evident in writing as well as speech; reading ability may be impaired; and having knowledge of what to do with an object, but still unable to name the object. I had every one of these characteristics at first, but I was able to work through most of them in speech therapy, which I had for six years after the stroke. After that six-year period of speech therapy, “word retrieval fluency” was the only residual deficit from the anomic aphasia.
Survivor Mitch Raymond with his parents in 1989
After the tumor extrusion surgery, the doctors told my parents that I might never walk again. The keyword there was “might,” but my parents took it as “will.” That was until I started rehab. My PT was the first therapist I saw, and my parents told her that the doctor said I would never walk again. The PT smiled and said, “We’ll see about that; no prognosis is set in stone when it comes to stroke rehab.”
It was through PT that within three months I could walk again; and within six months, I could run and play (with a significant limp) with the other kids. I kept having PT until sixth grade, when playing sports took priority over PT.
In school sports, I always felt subpar due to my weak right side, that is until I joined the Vermont Special Olympics (VTSO). It was through the swimming and skiing competitions that I realized that it was possible for kids to be more disabled than I was and still outperform someone like me through hard work, a lot of practice and determination. I practiced for, and competed in, the VTSO from 1992 to 1997. By 1997, I was competing well and had built up enough confidence in downhill skiing that I started coaching other kids with disabilities to compete in the winter VTSO games. I credit the VTSO with giving me the confidence I needed to become a successful adult.
From elementary school into high school, writing or typing narratives for school assignments was agonizing due to my residual word retrieval fluency problems on top of having to write with my non-dominant left hand and type with only one hand as well. But in high school a new piece of technology came my way.
As a sophomore, I was introduced to voice dictation software called Dragon Naturally Speaking. At first, it was difficult to train and use because of the accuracy issues of the program combined with my difficulty efficiently retrieving words. However, after a year or so, two remarkable things happened. One was the program became more accustomed to my speech patterns, and two my residual word retrieval fluency improved. This occurred due to the need to speak in complete sentences in order to get the program to transcribe the correct words. To this day, I still use Dragon Naturally Speaking and other voice dictation software to more efficiently perform word processing projects, and it has made a world of difference.
My biggest regret from my childhood regards my neglect of my right hand. I did have one period of progress late in the game when my mom signed me up for constraint induced movement therapy for two weeks one summer in high school. I regained my thumb and forefinger pincher grasp through this therapy, but I still neglected the use of my hand into my first year at college.
I went to Boston University for one semester of aerospace engineering and then one semester of astrophysics. All the while, spasticity was increasing in my elbow, forearm/wrist and hand muscles out of neglect. I saw this and also saw that my life wasn’t going the way I wanted it to. I ended up withdrawing from BU and taking a year off to re-assess my life.
Mitch helps raise money for stroke research at the 2018 Comeback Trail 5K
That summer, I began to design my own therapy regimen with everyday household items — PVC pipe, a basketball, pen and paper, cups, utensils, etc. With this I started to see some of my control returning and, for the first time, developed an interest in the rationale behind the rehabilitative therapy interventions I had been through. I then started shadowing local physical therapists to see what rehab was like from their perspective. I was fascinated by their descriptions of the rationales behind their interventions. I wanted to know more, both for myself and potentially for others, to see if I was able to accomplish what it took to become a therapist. I started applying to and visiting colleges again and finally got into the Quinnipiac University’s Master of Physical Therapy (MPT) program.
PT school was one of the most difficult challenges that I have ever put myself through. Not only was it mentally challenging due to the amount of information that I had to cram into my memory banks for each test, but it was physically challenging as well on a neuromuscular level. Almost every hands-on technique we learned and practiced needed to be adapted to the physical capabilities of my stroke-affected right side. In the beginning, this was hard. It was not only mentally hard, but socially and emotionally as well. My adaptive approaches to the textbook ways we were learning each technique were different and made me stand out among my peers. This made me feel somewhat of an outcast because a lot of them did not want to get confused by my alternative approaches.
I had to deal with the doubts of a few of my instructors who were hesitant to allow me hands-on experience with clients, because they were unsure of my physical capabilities. Once, one of my neurorehab professors allowed every member of my lab group except me to get hands on with a stroke survivor who was working on transfer, gait and stair training. I know now that I could have been hands on with that client in the field lab and been totally safe with him if I had been given a chance to be hands on. I was so put off by this experience that I reported this incident to the head of my department and vowed to never let it happen again.
Being a student of PT also had its perks. I got an educated and well-researched perspective from some of the greatest minds in the field regarding my case as a stroke survivor. I also had the privilege of being a subject of a graduate PT study on the application of Saebo® Splint products. I even got Botox® injections to tone down the spasticity in my forearm and hand so that it could be easier to stretch and work my hand with the Saebo stretch and flex splints that I got to practice with. Unfortunately, the project was cut short due to my catching mononucleosis during my week trip down to New Orleans in 2005 to be a part of the Katrina Relief effort. After five years of schooling, a year of clinical affiliations, and hundreds of hours studying PT baseline knowledge and skill sets, I finally sat down to the PT Board exams and passed my first time around.
Today, I am a licensed PT in the state of New York, a husband to my wonderful soul mate, Sue, and father to Owen and Eli, my loving sons. Since 2010, I have worked in all aspects of inpatient rehab as well as in home care. I currently work in a home care agency in upstate New York. I also lead a stroke support group called Friends and Family Stroke Recovery Group. It is through PT that I have accomplished many of my life’s goals. It is also through PT that I still work on my ongoing goal of continuing to regain the control and use of my right hand. As a PT, I work hard every day to help people achieve their goals of regaining their functional mobility through applied evidence-based practice, education given to each patient about my approaches to each of their cases, and empathy. Some people believe stroke is a curse. For me, my stroke was a blessing because it made me who I am today, a physical therapist who can empathize with the hard but rewarding work of rehabilitation.
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