Hi, everyone. This disease is so unpredictable that I never know if something's a fluke or the beginning of a new phase. I play the Irish tin whistle (when my arms are strong enough to hold it up). It's played very fast, so you take very quick breaths in between the notes. Lately, when I do that I breathe in my saliva sometimes and cough.

Is this what some of you experience? Or could it just be I have lots of extra saliva from the Mestinon, and that's all that's going on? I've been a lot weaker lately--thinking about a wheelchair, because there are times in the day when the walker isn't enough. My eyes ache and sometimes I have trouble swallowing, and but still my worst symptom is the truncal weakness.

I'm having such a nice summer--my two college kids are home, and my husband is a teacher, so he's home, too. So there are plenty of people to pitch in and get things done around the house. Haven't cooked a meal or washed a dish in a couple of months. I have lots of work from my computer (proofreading and transcribing) so I can contribute to the household while slumped comfortably in my chair. When school starts again, though, life's going to be complicated...trying to appreciate what I have in the present and not worry overly about the near future...

Abby

Abby, Do you talk a lot? Just wondering since swallowing and breathing muscles are greatly affected by that. And laughing, which seems like you would do a lot.

Sitting at a computer, whether slouched over or not, is hard work for those trunk muscles.

A wheelchair would mean arm work, which may make your arms even worse. A scooter is a good idea but it's hard to say if insurance would pay for that.

I'm glad you're having a nice summer. And it's great that you have such good helpers.

Increased saliva from Mestinon wouldn't necessarily make you choke. It's probably the MG. I can choke on my own spit and even on "air" sometimes! Totally normal. My latest favorite is when LaCroix goes up instead of down and ends up in my nose and eyes. Not a refreshing feeling.

You may want to reassess the chair you sit in at the computer. Does it support you well enough? Do you need to add pillows, a neck brace or a new ergonomic chair? If I do any cutting up of photos for projects, which I can't really do much of anymore, my entire back can go into spasm to the point of not being able to walk. You have to think about how what you are doing is adding to the weakness.

Maybe sip on some cool water after talking or have a fan blowing on you to keep you cool.

I think if you continue to be weaker, especially due to the choking, you should tell your neuro about it. I hope you get better.

Annie

Thanks, Annie. I don't think I talk a lot, but (sigh) I do read out loud to my kids a lot. And in the fall, I will be homeschooling, which means constant yak-yak-yakking all day. It may be time to rethink my pedagogical methods. I also know deep down that the day may come when I have to give up homeschooling, but I am not ready to really face that thought yet.

My computer chair works great for me. I slump backwards, with my feet on a stool, so that it's almost like sitting in a recliner, and the top of the back, which is heavily upholstered, holds up my head.

I think I will not try not to laugh, though.

Abby