HOW TO SUPPORT SOMEONE WITH MYASTHENIA GRAVIS (MG)


Myasthenia Gravis (MG) is a chronic autoimmune neurological disorder. Statistics from America show that approximately 12 – 20 in 100,000 persons have MG.
While there is no specific cause for MG, there is no known cure either.
Symptoms include high levels of muscle fatigue and poor endurance of involuntary muscles. This results in difficulty walking, moving, performing everyday tasks, swallowing, speaking, breathing and drooping of the eyelids.

MG is also called the Snowflake disease due to many MG warriors having such different variations and fluctuations in their symptoms and treatment.
Once diagnosed, a Neurologist will start a course of immune suppressants and cholinesterase inhibitors looking for the right fit. The administration and prescription of MG medication is more of an art than a science and needs to be monitored closely. IVIG, Plasma Exchange, cortisone therapy and a thymectomy may be considered by your Neurologist.

I was diagnosed with MG 9 years ago. I started displaying symptoms of muscle weakness approximately one year before my diagnosis.
Almost a decade later, I live daily with generalised MG, meaning it affects my entire body.
Support from my family and friends has been one of the biggest reasons I’m able to cope on a day to day basis.
Here are three main ways in which you can support an MG warrior:

Ask

One of the nicest things I have heard is “I read your blog and I now know a little more about MG”.
There is a lot of information available on the web from both a professional and personal perspective. Having more insight into your loved one’s condition allows you to offer help in appropriate ways.
Most of my family couldn’t even pronounce Myasthenia Gravis when I was first diagnosed. Now everyone, to varying degrees, know the general signs and symptoms.
The nuances of this Snowflake disease needs to be discussed in person.
Asking what an MG warrior wants or needs is a good way to not only help but also connect with them.
Sometimes your MG warrior may need more of a venting session with a good listener than a problem solver.
There are also online support groups for family and friends of MG warriors.

Assist

Due to the fluctuating unpredictability of MG, help may be needed at different times and in different forms. Some days I can conquer all the tasks I need to, while other days I have to ask my husband to dry my hair after showering.
I like to think of support as ‘scaffolding around a structure’, meaning the person you are helping is not incapable of doing anything forever, they just need specific assistance at this moment.
A great example is how my Mom helps when she visits. I put the kettle on and prepare the tea, but she will offer to carry the tray of cups through to the lounge.
Remember to ‘load share’. You don’t have to take everything on, but offer assistance in the area you know you can make a difference. For example, my friend Lani is a great prayer support, and my sister-in-law has immense knowledge concerning my rights in the work place.

Accept

Diagnosis of a chronic disease will bring life changes and role adjustments. The MG warrior is still your spouse, child or friend but may not be able to work, visit or socialise as before. Please keep us in your circle.
 
You may have to adapt the activities you do together. Instead of playing tennis why not watch the French Open together? You may also have to find new activities to engage in i.e. adult colouring.
I often feel guilty when I have to cancel a lunch date with a friend. Please remember I am not being selfish, but responsible for my health.
When I’m not in a good place, a simple chat over social media goes a long way to help.
Remember your loved one did not ask for this, they are not lazy and are not doing this for attention.
So please give them your patience and love in their times of difficulty.

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