How do you manage MG speech problems?
Have you ever experienced speech problems with MG? Speech symptoms can include slurred speech, trouble forming words, a monotone voice, and more.
Tell us what it's like. How do you cope and have you found any treatments or strategies to help?
I was diagnosed with MG early 2022 and started with bulbar symptoms (slurring, choking, head dropping) and collapsing for no apparent reason in 2021. Even knowing what's going on, even with treatments that have helped (a bit), I still run into problems when I start slurring and stumbling - people just assume I'm intoxicated and rare pretty rude. In the moment I don't always realize why I'm being treated badly - unless I start stammering I don't know I've been mumbling. I have a wallet card about MG but the font is tiny. By the time someone has decided that I'm drunk and therefore being disruptive, they aren't necessarily willing to squint at my wallet card. At the times when I'm struggling with speech, I generally am also experiencing some of the fun "constellation of neurological symptoms" that is part of MG: not fatigue but feeling like I'm inside a kaleidoscope that someone is spinning. Frequently unable to put words together at all.
After a recent and very upsetting experience of this, I made up my own version of the wallet card, but in 11 pt Comic Sans (looks friendly) and have stashed some in my handbag. I haven't deployed it yet, but at least I created a self advocacy tool when feeling ok and now have it to use when I don't.
Welcome to our community! We are thrilled to have you join us 😀 I'm sorry to hear about your struggles with MG. We understand how incredibly frustrating it is to have your symptoms misunderstood and feel mistreated by others. We admire how you proactively approached a problematic situation by creating your own version of a wallet card. It's great that you have a self-advocacy tool to use when you need it. Having something like that on hand can provide a sense of security and empowerment. When the situation arises that you need to use it, I hope it serves its purpose well. Here are three articles that I think you may relate to: https://myasthenia-gravis.com/living/choosing-compassion, https://myasthenia-gravis.com/living/avoid-saying, and https://myasthenia-gravis.com/living/speech-struggle-experience.
Jodi, Team Member
I love this prompt! The things that come to mind at first are the use of Technology, openly discussing challenges with true authenticity, slowing down my speech and having worked very closely with a very talented speech coach!
I struggled with greatly with the speaking challenges especially as a public speaker from my preteen years. I have had the pleasure of leading a statewide youth organization as well as meetings with thousands of high schoolers while in HS to having laid a strong foundation for a career in politics and law - that is until my body decided that there was a different role for me to play.
As my body transitioned in is capabilities, my ability to speak has diminished greatly. I had to spend a great deal of time learning how it’s too compensate for those challenges by reducing my words and speaking, slowing my speech down and truly practicing patience and compassion for oneself..
I have also invested a good deal of time and money into training with a voice coach who is able to teach me ways to breathe while speaking, which has reduced the breathiness in my voice. It doesn’t of course, fix the challenges with the droopy eyes or the parts of my mouth that don’t move - especially when fatigued. Or simply help my voice control software recognize my speech as well (pro tip: train your voice dictation programs when you find yourself slurring the most!)
❄️ team member Deborah ❄️As a pastor the speech problem ranks right up there with the exhaustion. I have learned to make decisions based upon what my body allows. Yes slowing down to think and form words was my first lesson. My second lesson however was that I cannot eat at functions where I am expected to speak. Eating wears me out!! I cannot eat and speak, so I choose speaking because it is my calling. I used to apologize for my slurred speech however now I just explain what is going on, more people understand than you might think.
Acceptance, self love, gratitude and Authenticity!
I love the last part of your statement which you state that you’re listening to your body more and that you openly explain the challenges.
It took me many years post diagnosis to become comfortable with the new challenges that I have public speaking, both physically and cognitively, as well as recognizing limitations.
As a public figure, I have learned to joke about my challenges, especially during public speaking events. Making it easier for people to feel comfortable in discussing and even inquiring about my challenges.
I even spent about six months with a speaking coach to learn how to breathe while speaking (especially through the use of smiling) to help reduce the breath and learn how to breathe while speaking. Truly inspiring! ❄️Team member Deborah ❄️dramatic pauses can be our friends. 😀 I have learned to write my orations with room for audience reaction and response in order to breath, posture, think, and regroup. MG teaches if we are willing to be students. Thank you.
I have experienced slurred speech many times over the years. Sometimes I don't notice it until my partner points it out. That usually calls for an additional Mestinon, or rest. It happens most frequently when I have been very active and am growing tired. Quite annoying, but manageable.
It's good to hear from you Jim. We appreciate you sharing. I hope you have been doing good lately 😀 Jodi, Team Member
