Part 3: The Real Impact Living with MG

by Manley Lavender

Upon receiving my diagnosis, in July of 2021, I didn't fully understand what it was going to be like, living with Myasthenia Gravis (MG) and trying to sustain full time work or other community involvement, such as volunteering, coaching, athletic activities etc. At that time, I was a full-time business compliance consultant, having clients in Durham region and parts of the GTA.

As a compliance consultant/facilitator I was expected to perform site inspections, in all areas of the facility, yard, and adjacent buildings. Furthermore, as an adult facilitator, I would be hired to deliver training workshops, facilitate meetings, as well as be expected to attend board of trade meetings and other affiliated activities.

I had been an ice hockey official for 30 years which allowed me to stay involved in a community sport and earn money to help my family. Upon news of my diagnosis, my medical team had advised me it was going to be difficult to stay involved in any or most physical activities (like skating, running, cycling, hiking). For me, the aspect of losing the ability to be physically active was something I had to accept. I became very focused on what I needed to do, such as follow and trust my medical team’s advice, develop a physiotherapy plan, adjust my nutrition habits, and so on, to get back some or most of my physical abilities. I identified myself as an athlete, and relied heavily on my athleticism to accomplish most of what I did day to day.

The main challenges, having MG, more specifically (Generalized MG), were my vision, standing for longer than 30 seconds, 60 seconds, or maybe up to two minutes without having to sit down and get my energy/muscles back. Furthermore, my eyelids would droop, and I would have double vision which made it very difficult to drive. So, unfortunately, I had to suspend driving which directly impacted my ability to work. This meant I was reliant on my wife and family members to get me around to various family activities and appointments.

 A challenge, many MG patients live with, is the perception we present: we do not look like we have a physical disease. However, performing basic tasks, like unloading a dishwasher, holding utensils, getting in and out of a shower, walking in and out of a doorway with steps, talking for any length of time, would be daunting, leading to frustration, a sense of despair and discouragement.

As MG mostly impacts adults in mid-life and beyond, this also relates to the bulk of a person’s career. Depending on the person's work status and whether they have private healthcare or a benefits plan, it will directly impact the range of medical support which anyone will receive. Furthermore, depending on where you live in Canada, that will also directly impact any access you may have to specialized healthcare, as it relates to this rare disease (MG).

If you are fortunate to have access to a research training hospital, you will likely have a medication plan which accesses new treatment options. Others may not have the same access, as their medical team is not given access to new treatment plans or more options.

The choice MG patients are left with, is, “You must keep going through hard times, and trust your plan to become stable. ”

Next: Part 4 - How can our community step up and make a difference