The Changes I Made to Accommodate MG in My Life

The Changes I Made to Accommodate MG in My Life

A diagnosis of MG inevitably leads to several adaptations in daily life. These adaptations, in turn, result in functioning that is closer to normal. They also ensure a distance is created, prompted by the difference between my peers and me.

The difference easiest to hide is a changing diet. I have changed my food preferences to things that require less chewing and are easier to swallow, and I always enjoy a drink with my meal to help with lubrication for comfortable swallowing. A doctor or speech pathologist can recommend these changes.

Initially, they can be challenging. My favorite snack, for example, has always been fresh, crunchy carrots. I have realized, however, that I tend to cough or choke a lot when eating them. I have now adjusted this love for fresh carrots by either grating them or cutting them into much smaller pieces. Even carrot juice is a good alternative.

I do miss biting down on a crunchy carrot, and on good days I still will, but I have found that eating safely is more important. Choking in public while sitting at a restaurant is nothing short of embarrassing. I’d do anything to avoid the awkwardness it causes.

(Courtesy of Retha De Wet)

When I was weaker than I am now and struggling to respond to medications, I needed to make use of a mobility aid to walk distances longer than 100 meters (328 feet). There aren’t any subtle changes when moving from walking unaided to needing to use a cane. It was very obvious, and people would comment on it. I despised it until I decided to make the best of it.

I went to my grandmother’s house and picked out one of my late grandfather’s sentimentally beautiful wooden canes, thinking it would make me less self-conscious about needing to use one at such a young age. I was still met with unwanted comments, mostly from people thinking my beautiful cane was merely a fashion accessory. But it also made me feel a little less removed from society. Besides, I love looking back at photos of me and my cane since I look like a hipster. Who doesn’t like being on trend?

The last adaptation I will write about is the necessity of carrying around my tablets wherever I go; a myasthenic’s dependence on Mestinon (pyridostigmine) is crucial to a better quality of life. Whenever I forget my tablets, I am immediately filled with an immense sense of panic. Mestinon allows me some control over my symptoms, however short-lived, meaning each dose is as important as the last.

This has led to an impressive collection of beautiful tins and holders filled with Mestinon in any bag I have. The intriguing pill cases distract others from me quickly sipping down a tablet and provides an interesting conversation topic. It steers the conversation away from my health to a lighter, more materialistic conversation — which is sometimes needed to make me feel more “normal.”

Each person will decide for themselves which adaptations are necessary depending on the type and severity of their MG. It is important to try to welcome these changes and to accept them instead of putting them off. After all, you are only inconveniencing yourself.

It’s most important to never stop fighting. Life is beautiful.

***

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

2 comments

  1. Carol A Jacques says:

    My companion has been diagnosed with MG since October of 2018; however, we noticed symptoms long before the diagnosis. After hospitalizations and infusion treatments, he still cannot eat. He has tried, but was taken off of food during his last hospitalization. I have tried putting potatoes, carrots, and chicken pot pie soups through a food processor and he is still not able to swallow. He had a swallow study and the results were not too good. He has a speech therapist to help with throat and swallowing exercises. What can we do so that he can eat.

Leave a Comment

Your email address will not be published. Required fields are marked *