Planning for the unpredictable: Managing MG hard days as a family

Note: Mark Harrington lives with myasthenia gravis, and is a columnist for Myasthenia Gravis News.

There are episodes that leave a mark long after the muscles recover. It could be a night when swallowing becomes a negotiation and my jaw refuses to finish a sentence. Perhaps, even though it’s only midafternoon, my eyelids drop like a theater curtain. Or the most frightening of all, a sudden choking fit makes certain death seem all but inevitable. 

Fear fills those moments and leaves me completely drained and in need of several days for recovery. If you also live with myasthenia gravis (MG), you already know that brand of terror. I often forget that those episodes also greatly affect those I love. Fear becomes a constant in their lives.

The time to manage an MG crisis is before it occurs. Necessity has forced my family to construct a household that bends without breaking when the body sounds its warnings. What follows is what MG family planning for hard days looks like.

Recognizing yellow flags in an MG symptom flare

One of the most exhausting things about living with MG is the labor of explaining yourself mid-decline. By the time a flare is obvious, articulating what’s happening is precisely what you can no longer easily do. What has helped our family enormously is learning the early signals. I call these the yellow flags: They signal that we’re entering dangerous territory. Things haven’t become urgent, but it would be foolish to pretend everything is normal. 

I ask my loved ones to keep an eye on the following:

• My voice: My voice develops a slight nasal quality before a flare. 
• My eyes: My eyelids don’t close, they drift, in a slow descent that has nothing to do with sleepiness. 
• My jaw: I’ll find I have jaw fatigue that shows up halfway through a normal meal.

Teaching your family to recognize your signals can help remove the burden of explanation when explanation is hardest. They don’t need a medical lecture. They need a shorthand. When the people around you can spot the yellow flags on their own, you get the gift of being seen before you have to ask for it.

The low-energy household plan

Our plan separates tasks into two categories: nonnegotiable and drop-eligible. 

Nonnegotiables are the things whose neglect would cascade, such as:

• pet care
• medications
• basic nutrition
• making sure the people in the house feel safe and attended to 

Drop-eligible is everything else that can wait, such as: 

• laundry
• cleaning the floors
• other errands 

I learned this lesson while in intensive care. Lying in a hospital bed, it dawned on me that many things I thought were essential weren’t. If the bathroom has towels all over, it’s not a big deal so long as I can swallow without choking.

For meals, a freezer stocked intentionally is a form of care. We rotate in high-protein soft foods, soups, blended stews, smoothie packs, etc., so that on the days when chewing and swallowing require effort, there is still something nourishing that doesn’t require much effort. I don’t want to choose between eating and preserving what little energy remains.

Creating a flare-up kit for rest and recovery

I stopped calling our flare kit an emergency bag. It is an everyday-ready kit. 

Here are some items I put in it:

• instant-activation cooling wraps for the neck because heat can worsen MG symptoms
• a single-eye patch for the moments when double vision makes reading or moving through the house disorienting and unsafe 
• a dry-erase board on the nightstand and preprogrammed smart home shortcuts that help communicate effectively with minimum effort 

None of these things is dramatic. That’s the point.

Knowing when to head to the emergency room

The decision to head for the emergency room is something I always hope to avoid. Still, when symptoms continue to escalate, it may become necessary to seek medical care. You should always discuss the “when” with your doctor. Decisions about when a trip to the ER is necessary should be made in a calm atmosphere where emotions aren’t running high. 

The plan should be explicit as to when managing MG symptoms at home has exhausted its usefulness and safety requires management by professionals.

We keep an MG crisis emergency card in a known location. It lists current medications — and as such, should be updated when they change — and other facts first responders should know. It designates who handles household tasks, such as school pickups and notification of my employer. Most importantly, it lists the individual designated to make all major decisions I might be unable to make.

We have a prenegotiated backup network. Tasks that need attention during a flare-up are assigned so I don’t need to worry about organizing them. These can include:

• carpools
• grocery runs
• calls to family and friends who need to be aware of the situation

It is also important that financial concerns be addressed. Questions to keep in mind include:

• Does an employer need notice? 
• Are there bills that must be paid by a certain date? 
• Are insurance policies up to date?  

These are not emergency favors asked in the middle of a crisis. They are standing agreements made when everyone was calm.

The caregiver’s role: Preventing burnout during flares

When my symptoms spike for days rather than hours, my family absorbs an enormous operational load. And the advice they most often receive is “Take care of yourself.” It’s offered with the best intentions, from a loving heart. Yet, it often comes without practical guidance on how to actually do that.

This matters because the caregiver’s physical and emotional stamina is not a secondary concern. It is part of the overall MG management plan. When the person carrying the household collapses from exhaustion, the patient does not become safer. Protecting the caregiver is not separate from protecting the person with MG. It is part of the same effort.

Living with MG has made our family more deliberate. We are more honest about our needs. We share what we can give. And surprisingly, our ability to ask for help has grown. The hard days still come. But when a storm has a name, and you’ve walked through the house looking for what might not hold, you meet it differently.

The fear doesn’t disappear. It just has somewhere to sit. I’ll let Waylon Jennings and Jesse have the last word: “Storms never last.” True enough!