Patient Story and Advice Blog Living with Myasthenia Gravis through Art post titled "Tips for Helping Someone Who Has Myasthenia Gravis" for caregivers of MG patients

This blog is not a diagnostic resource. It is a recounting of my own experiences for the purpose of Myasthenia Gravis awareness, and support for other sufferers. Always refer to your doctor’s advice and diagnosis when handling your own symptoms.

Find straight facts on Myasthenia Gravis here. This Australian MG resource is factual, clear, and not just fluff. I recommend it.

I recommend the NeuroTalk MG forum for very reasonable interactive patient support for Myasthenia Gravis patients and their families. 

Caregiver Guidelines for Myasthenia Gravis

Interested in better caregiving for those with Myasthenia Gravis (or even yourself)? This disease is better not faced alone, and caregivers may not know what a diagnosed person is going through. It’s an invisible disease that is not very commonly known, so read on for my informative tips on Myasthenia Gravis care. The emphasis of this blog post is general advice in caring for someone with Myasthenia Gravis with minor to medium levels of symptoms written by someone who has the disease themself. Important note: If weakened breathing or dangerous symptoms are coming into play, go to the hospital.

Care Guidelines for MG Strength

Helping out with strength should be a “no brainer” for caregivers aiding someone who has Myasthenia Gravis. That said, I’ll present another side of the puzzle. The lucky MG sufferer will have many days where they have normal strength and truly do not need help with normal, or even strenuous activities. On such days, try to rely on them actually asking for help if they should feel strength waning and only start to help then. It can become very frustrating to have an overly enthusiastic caregiver actually take away the diagnosed person’s “ability” by not letting them do what they can, when they can.

Typical strength aids include setting up a home environments that can be clearly navigated with the addition of possible safety aids such as railings in the bath / shower. Be sure to keep important objects on easy to reach shelves, ideally at or below shoulder height of the MG patient. Chairs placed strategically in the home are important for days when distance walking isn’t possible. A chair in or near the kitchen is also a big help for breaks during cooking or even simply when brewing coffee or tea. Taking it easy is a good way to stave off symptoms. Resting is a must when symptomatic. An important caregiver guideline for myasthenia gravis patients is to watch that the person you’re helping out doesn’t too hard.

Diet, Strength, and Myasthenia Gravis

Moka Pot Joy by Susan Hicks - A celebration of coffee and caffeine from Myasthenia Gravis Caregiver Information blog post
Moka Pot Joy by Susan Hicks – Caffeine is reported to help improve Myasthenia Gravis symptoms.

When caring for someone with Myasthenia Gravis, diet is an aspect not commonly in the forefront of the mind as far as strength goes, but it can be an issue with MG. Here are some diet care guidelines for Myasthenia Gravis. On weaker days set up your grocery shopping list to avoid hard to chew and swallow foods like nuts and pork. Of course if swallowing is a current problem from MG weakness, Myasthenia Gravis caregiving including adhering to a new diet of pureed moist foods is necessary. As a caregiver, food should be cut as finely as possible, and consumed in small spoonfuls or bites. Liquids should be sipped slowly. One bit of Myasthenia Gravis advice in caregiving is to exercise patience with longer dining times.

Temperature Guidelines for Myasthenia Gravis

In my own experience having Myasthenia Gravis, the most sudden, surprising bad effects I’ve had have been caused by heat. Plain and simple. It is very important that someone with MG stay in a cool environment. Caregiver tip: seek out air conditioned environments. That is a hugely important guideline.

Personally, I start to suffer weak eyelids and fatigue in temperatures above 74 degrees. If I sit near enough to a hot lamp, my eyelids will simply start to close slowly, or at best droop slightly. Once on a day in the upper 80’s I thought I could get away with being outside long enough to pat some dogs and then sit on a bench for about 3 minutes. Imagine my surprise when I then collapsed getting into the arrived car, hitting my head on the side of the car roof. I ended up with a concussion. There was no warning that weakness was coming on, the collapse was so sudden. I had not followed my caregiver’s advice to stay inside until the car had arrived.

Made in the Shade

When outside on warm days, stay in the shade. Myasthenia Gravis care includes using cooling garb (gel pack neck wraps and even cooling jackets are best) in environments where air is warm-to-hot. Gel packs have a time limit on them and are still not as good as just being in a cool place, but they may give the diagnosed person a bit of freedom to get out and about. Drink iced liquids to keep body temperature down – water is best. These are all good items to have on hand in the car when traveling in warm climates. They serve as back-up cooling if a car breakdown occurs. Caregiver guideline for myasthenia gravis: Traveling as a Myasthenia Gravis patient can take planning and coordination.

Hot Hot Hot - Knife painting by Susan Hicks in Myasthenia Caregiver Guidelines to illustrate how heat influences Myasthenia Gravis symptoms
Hot Hot Hot by Susan Hicks – Painted as art therapy for Myasthenia Gravis

Air conditioning is a must have in the home of an MG sufferer. Myasthenia Gravis pro advice: Call and inform your electric company that the household should get priority for getting power restored after an outage for health reasons. They have a form that can be filled out. Indoor air conditioners are a good solution for back-up during possible heating / cooling failures in communities that do not allow window unit air conditioners. If looking for a rental apartment, try to get a unit with individual heating / cooling control, so that you can switch from heat to cool without waiting for a building-wide switchover. Let the management know the rental is housing someone needing this Myasthenia Gravis care.

Guidelines for Less Stress

I cannot emphasize this Myasthenia Gravis aggravating factor enough as a part of MG care. Stress and emotional upset plays a huge factor in causing MG weakness and appearance of symptoms. If you know someone with Myasthenia Gravis, be a Mensch and leave them in peace. That’s really the kindest thing you can do emotionally in caring for someone with Myasthenia Gravis. We all know what general stress is, but as a caregiver you should also be aware of emotional stress.

Caregivers themselves can unwittingly cause stress. If you are caring for someone with Myasthenia Gravis, don’t be a “helicopter” caregiver. The disease takes so much freedom away from the sufferer that any bit of freedom and wiggle room is welcome. Of course it’s awful watching someone you love or care for go through the grim aspects of the disease, but symptoms fluctuate. It’s possible to have a really bad day and then be stronger the next. Let a good day Myasthenia Gravis day be a good day. It does happen. That’s a kind guideline in MG caregiving, and allowing and maintaining hope is an important part of Myasthenia Gravis advice.

It's Chaos Be Kind T-shirt from Melasdesign on RedBubble
Myasthenia Gravis can feel like chaos. Always be kind and patient, with yourself and the person in your care. “It’s Chaos. Be Kind” by Susan Hicks.
Being Myasthenic Can Cause Stress

So stay calm and try to do a certain amount of riding out symptoms. For a newly diagnosed patient, it will take a while to recognize personal symptom patterns and causes. There’s new medicine to deal with too, and some are tricky beasts. Taking too much Mestinon can actually cause symptoms. Immediately upping Mestinon dosage with new symptoms is not necessarily the best way to go. Follow your doctor’s advice until you begin to recognize the ebb and flow of symptoms. Get in touch with your doctor if there is a trend for the worse. Try not to agonize about every change in symptoms. They may ricochet unpredictably from day to day and hour to hour. They also might not. You will learn to recognize when to worry and when not.

Doctors appointments can be very stressful for some MG patients. It is best if two people are at each neurologist appointment. This aids in understanding and can also act as moral support for the diagnosed patient. Another stressful aspect of neurology: What a neurologist counts as “strong” is not necessarily what normal “strong” is. In office visits, the emphasis is more on immediate weakness during testing. In the hospital, they probably won’t want to keep you inpatient beyond the time that a direct crisis emergency is being warded off. Other weakness is to be cared for at home, or out of hospital. Those are some hard facts of Myasthenia Gravis advice.

Caregivers should Respect Limitations

Respect the limitations of the Myasthenia Gravis patient. Another important Myasthenia Gravis caregiver guideline, especially for partners who are more active late in the day is to be patient with waning strength as the day goes on. In symptomatic phases, going out at night might not be the best idea.

Up Down Sideways - Art therapy for Myasthenia Gravis by Susan Hicks - Exploring limitations and care in those with Myasthenia Gravis
Bright cheerful colorful emoji shape abstract artwork with arrows and squiggles in tropical colors. – for sale on RedBubble in the Melasdesign shop.

Pay attention to medicine timing and help keep a regular schedule. In Myasthenia Gravis caregiving, when symptoms are bad, it’s easy for the diagnosed patient to lose track of time, or simply be a bit out of it, because they just don’t exactly feel perky. I always have my alarms for the day set the previous night on my cell phone, starting from my wake-up alarm time.

Long term caregivers should learn the person’s symptom patterns and sensitivities. Myasthenia Gravis care includes respecting limitations of the person you’re caring for. As a caregiver you shouldn’t be pushing them in a direction that might be disadvantageous.

That’s a wrap for my edition of caregiver guidelines regarding Myasthenia Gravis

Susan Hicks

Susan Hicks

Artist - Melasdesign | Alexandria, Virginia | Thomas, West Virginia

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