Friday Feature: The Journey of Perseverance with Manley Lavender

Written 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 and having a Johnny Cash impersonator perform 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 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 from my GP to neurologists, dermatologist, speech pathologist to a battery of tests, and several more specialists to determine my signs and symptoms, and why I was feeling that way. Consequently, I just kept going from one doctor's appointment to another without getting any clear conclusion. I started to wonder if it was just age related or I needed to just accept that my body was changing, as I could no longer engage in general outdoor activities that I would just naturally go out and do without any hesitation. (my eyesight was impacted, my eyelids were drooping, continual speech challenges, swallowing, chewing). The timeline is now well on two to three more years of going to various medical appointments not really getting any clear diagnosis but rather feeling more frustration impacting my ability to work to just have a regular life, questioning my effectiveness as a business consultant as a family member father, husband, neighbor, brother.

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

Finally, I was introduced to a new GP that felt that 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 that I wasn’t faking all my signs and symptoms.

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

Want to share your story? Email Kathryn at kathrynclemens@mgakc.org