NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - How to Talk (https://www.neurotalk.org/myasthenia-gravis/257539-talk.html)

I am at end of a horrific day and a really painful 3 days. I am hoping someone can share an idea or a link. Given My breathing and voice are worse calling and talking especially later in day just are bad bad for me. Yet my thoughts have been dark. My daughter is delaying my Solumedrol shot and changing what she wants. Today my aide came with a car she didn’t know how to drive so her dad came to coach! Really this is what happened!, He said oh she will have by next time. It was a stick shift. I am sorry I can’t do that particular circus again. She is in an abusive relationship and I am too sick to continue with this aide. Too risky. My spirits go down when I am in need of the Solumedrol as my sleep degrades and my breathing become uncomfortable 24/7. It wears on me. Sculptor 44

Sounds as if you had a very difficult day.

Do you mean that you're too exhausted to talk at the end of every day or only on the really busy, difficult and exhausting days?

Hopefully someone who has MG will respond with some ideas. I had a few ideas to help but don't know if they're truly helpful or not. Let us know more if you need us to find something specific.

The only thing I can think of is resting more during the day and making sure you get good night sleep.

Try to get others to understand that you do better earlier in the day and maybe only schedule appointments or people visiting to early in the day.

Tips for Living Daily Life with Myasthenia Gravis | MGFA

"conserve energy"
"don't stand when you can sit"
"don't sit when you could be laying down"
"modify consistancy of food"
"schedule busy activities early in the day"

Effects of MG on voice, speech and swallowing

Talks about exercises to help with dysphonia or dysarthria and getting help from a Speech Pathologist.

Keep the environment temperature regulated. Not too hot and not too cold.

BTW, I'm on a mac and if I have difficulty reading some sites, I just use touch gestures on the touchpad to magnify.

Unbelievable! Went to ER and Doctor ordered IVIG. It took my breath away in surprise. Then I was admitted to Hospital. More later. Long long day. Sculptor 44