Ask the Advocate: Caring for a Partner with Myasthenia Gravis

Life as a caregiver or care partner to someone with myasthenia gravis (MG) can be overwhelming. Whether you are a spouse, parent, child, or other loved one of someone with MG, providing care is no easy feat.

To help others understand the reality of MG caregiving, we asked our advocate, Juliana, to discuss her experience caring for her husband. Here’s what she had to say:

Focusing on the progress

How do you help a person with MG stay motivated?

"Motivation is a major issue with MG. There is no "1 shot" cure, not even a "1 month" or "1 year" cure. My husband had other preexisting conditions too, so the long haul just got longer with MG.

We spent 3 years moving from doctor to doctor, up the specialist ladder, to finally get a definitive answer. In those long months, there were frequent hospitalizations and days when he was really, really sick.

I need to constantly remind him of the progress he's made. He can get so focused on his fatigue or weakness that he forgets. Two years ago he spent 6 weeks in intensive care. He would just collapse many mornings. Now he can get some of the projects done that he used to enjoy so much. (Not all, of course.)

I try to help him resist the impulse to focus on what he cannot do. I also have to remind him that some of the meds can really change his behavior (impatience, crabbiness).

His profession is family counselor, and his normal personality is as empathetic and calm as you can imagine. When I have to "nag" about the pill schedule and he shows a bit of temper, I have to remember: That's the prednisone talking!"

Support from loved ones

What’s something a friend or family member did that helped you after your loved one’s diagnosis?

"Among close family and friends, support has been totally solid. The best thing that my family has done is to really compliment me for being a "bulldog." When I feel like I've come on too strong, they remind me that it is absolutely necessary.

Our 2 sons are incredibly protective too. The one who lives at the opposite end of the country calls a few times each week just to chat. The one who lives close just flops and watches old Westerns with him late each evening. That unspoken support is priceless."

Even though I acknowledge the dangers and pitfalls of social media, in our case the support of real friends has been really uplifting.

When my husband got a hospital release, a positive test, or a rehab milestone, a few dozen virtual "high fives" would pop up and hubby would smile for hours. When you are mostly home-bound, it's easy to feel isolated. Hard as it is to believe, he needs to know that his friends remember him!"

Advocating for my husband

What’s one thing you wish more people understood about MG?

"There is certainly a lot of misunderstanding out there about the condition. I've bristled in angry defense when some ignorant bystander thought he was drunk because of slurring, or wouldn't cede a chair when he was about to collapse.

Even in the medical community, the knowledge level about the condition is extremely low. I constantly realize I'm coming off as a really pushy woman, and see signs that's the impression I'm making.

In general, medical staff isn't comfortable with someone coming in with print-outs, specific directions for foods and feeding, warnings about potential complications. But I've found out by bitter experience that without this extra information it's my husband who suffers."

Valuing time together

There are many changes that take place after an MG diagnosis. What’s something that has not changed for you, or between you and your loved one, since diagnosis?

"There are a lot of things we cannot do anymore. We miss long dinners in fine restaurants. With COVID, even the concerts and plays we love are postponed. He cannot bike right now and avoids long trips.

But we are still enjoying one another's company - after 55 years! We share the punchlines of old jokes without even having to relate the lead-up, laugh at memories of the kids, and have the same frustrations."

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