Simon,

I have trouble speaking sometimes.

Before I started Mestinon it was hard to speak, it is so frustrating and emotionally painful not to be able to say what you want to say. Sometimes my mouth would just not say what I wanted to say. My voice actually changed and I had difficulty making noise come out of my mouth. It is hard to describe what it feels like.

Now that I have been taking Mestinon for a while (5 or 6 months I think) I don't have major speech problems. But I still can't talk as much as I did before MG. I have always been a fast talker and I am working on training myself to talk slow and it is so hard to change, I actually skip saying some of my words since I am used to saying it all so fast. My opinion is that once I learn to say everything slowly that I will be able to communicate effectively again.

I do lose my ability to speak if I get stressed, which causes more stress since I am unable to talk about what is bothering me. My husband tells me I go and "hide" when I get stressed and he doesn't like it. What else is there to do? If I keep trying to talk I get more stressed and then I feel even worse MG symptoms coming on, too dangerous to stay and continue trying to talk! Resting does return my ability to speak.

Now that I think about it, double vision and speech problems are the first sign that I need to take Mestinon or rest, they are like my danger signal and I have to stop what I am doing and take care of myself (or face worse symptoms).

Simon I hope you don't lose your voice again. This is no fun.

simon,

sorry to hear about the hard time you are having with this illness.

it's hard to give someone any advice, because what works for one, may be quite the opposite for the other.

all I can say from my own experience, is that what may be quite overwhelming initially, can be dealt with eventually.

and that it is possible to find innovative ways to do almost everything, even be a DJ with occassional speaking problems, if you are ready to make the effort to do that, and find those that will help you with it.

from my experience at least, more times then not, if you are ready to honestly discuss your dissabilities, as well as what you do have to offer, people will be quite ready to accept it.

my rehab physician once said to me-if someone wants to succeed in climbing the everest, he/she has to be well prepared, and we each have our own "everest", and if we are well prepared for it, we can eventually climb it, without crashing or having to be rescued.

I hope this never happens to you again, but even if it does, I am sure you will find the way to work around it.

alice

Hey Simon,

When is Thanksgiving again, in the US? I think that was a couple of weeks ago, right? That's a pretty good sign, I think, that it hasn't happened since then. What are your main areas of weakness, and how long have you had MG? I have this gut feeling that it was just a thing where maybe you were very tired, and the MG sorta started to affect a muscle group that it normally wouldn't, like what's happened with me a few times. Hopefully, if it does affect your speech, it'll only happen to a very mild degree, like with me and the ptosis/DV.

Hey Desert,

I know- the speech thing sure does suck! It's good that you stop yourself when you're getting stressed, so that things don't get worse. I agree that it must be tough to bottle up your emotions in order to prevent further weakness. I usually just continue talking as much as I can, even when I'm stressed, which is prolly why my speech ends up getting so slurred and completely nasal. Many times in the past, I've ended up writing things down for people if my speech starts to get very bad. At first, it was due to embarassment. I didn't want people to see that 'side.' My facial muscles get really weak too, where I can't close my mouth tightly. It's just a big mess when the weakness gets bad. But yeah, speaking slowly, with a bit more volume, helps to articulate- but sometimes, people think that I'm mad, but I'm just trying to articulate.

The trials and tribulations of this disease!


Nicky

Nicky,
You are right. Thanksgiving was a few weeks ago and things have been good. I had one minor instance this past weekend, but I was very tired, so I think that might be a trigger. Thanks for all your feedback, it really helps to hear others and what they have gone thru.
Simon

No problem, Simon! I agree that it helps to much to have others who can relate to our experiences- Excellent news that it hasn't really recurred, albeit to a tiny degree!