The Journey of Perseverance

By Manley Lavender

Unknowingly, my journey started the evening of my 50th surprise birthday party planned by my wife and family. I returned later in the afternoon, after spending time with my friend, while my family organized the party and invited friends and family to our house, where a Johnny Cash impersonator performed during the celebration.

Well into the evening, my wife stopped and asked me if I was feeling OK and I said, “Well I'm not sure, my speech is slurring, and my face is feeling droopy.” As I'm not a drinker it was not alcohol related, so I thought maybe I just had too much sun and that food wasn't agreeing with me, or did I get hit with the “Ugly Stick”

The next day I booked an appointment with my General Practitioner (GP), to learn more about why I was feeling and looking the way I was. Consequently, my first appointment was the first of many appointments. I went from my GP to neurologists, dermatologist, speech pathologist to a battery of tests, and several more specialists to determine my signs and the symptoms I was feeling and what I was feeling about them. I just kept going from one doctor's appointment to another. I started to wonder if it was just age related or if I needed to just accept my body was changing. I began to question whether or not I could engage in general outdoor activities, like I previously would naturally do without any hesitation. My eyesight was impacted, my eyelids were drooping, I had continual speech challenges, and trouble with swallowing and chewing.

The timeline is now well on two to three more years of going to various medical appointments, while not really getting any clear diagnosis. Instead, I was feeling more frustration and that was impacting my ability to work toward having a regular life. It had me questioning my effectiveness as a business consultant, as a family member, father, husband, neighbour and brother.

After about six years, I was very close to giving up and resigning to my condition, as I couldn't face another medical appointment let down, with no clear direction or diagnosis. I did some reflection and soul searching, and determined I had to keep going, for myself and my family, as I knew there was a diagnosis within reach. Sitting still was not an option.

Finally, I was introduced to a new GP who directed me to someone who could properly diagnose my signs and symptoms, a neuromuscular specialist. Upon my first consult with our new GP we came in with our notes over many years of medical appointments and she openly welcomed my input, listened about what I was going through, and reassured me she knew I wasn’t faking all of my signs and symptoms.

My initial meeting consult with our new GP finished with a name of a doctor, who was a specialist, and the possibility of a diagnosis, known as myasthenia gravis, a rare neuromuscular disease. At this point of my journey, I've yet to formally be diagnosed and am still not aware of the work, time, energy and effort required to determine a diagnosis, move on to further testing, a resultant treatment plan and so on. Up to now, I have a diagnosis, but still a lot of heavy lifting on my part, my wife's part and my family's.

The next installment, is on my diagnosis and understanding and excepting what comes next…