lump in throat, beginning of bulbar?

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maf

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PALS
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alaska
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alaska
I started feeling a lump in my throat, is this the beginning stages of bulbar? Anyone have this problem? I have a nero appt on the 11th.
 
Not likely, usually impared speach, swallwoing rather than a lump.
 
jamiet

Thanks, have you had your 3 day trial yet? Feeling any better? I'm sorry you have young ones also, I hate thinking my little ones aren't going to remember their mommy too. Hope all is well!
 
3 day workup coming on 16th Jan, you should look into this if your concerned. I don't know where you are from, but mine is in Houston, but i think most ALS clinics offer this. I've got multiple symptoms going on.. Yes, this is very difficult with young ones, but if it's ALS, it's not a death sentence, it is a managable disease, and the statistics are not accurate regarding life span! It took me a while to get past the panic stage, and still don't know what i have. Look at it this way, whatever it is, lifethreatning or not, you at least have been given a chance to spend your time wisely, with your family, etc, rather than unlucky people whos lives are taken suddenly.

good luck with your appointment, make sure you keep a journal of what's happening and write your questions down or you will forget 1/2 of what you wanted to show him and ask!
 
Jamiet said:
3 day workup coming on 16th if it's ALS, it's not a death sentence, it is a managable disease, and the statistics are not accurate regarding life span! It took me a while to get past the panic stage, and still don't know what i have.

You know, there's nothing wrong with trying to make lemonade out of lemons, but not at the expense of the facts. ALS is definitely NOT a "managable disease." ALS is a progressive fatal illness with no effective treatment and no cure. It is thought now that the average lifespan of a PALS exceeds the three-to-five year estimate most often seen quoted, but only by a year or two. It's also true that around 10% of PALS live well over ten years. Unfortunately, medical science knows nothing a PALS can do to make herself part of that 10%. It's all pretty much the luck (or unluck) of the draw.
 
Not true! The satistics for life expectancy apply only to those who choose not to vent. It is those who go on ventilators who live longer. I chose life over death, and I have high quality lemonade coming out my ears. You have a choice.

Mike
 
mike

hi mike,
I looked at your web page and was wondering how you type when you are paralyzed? If you took your ventilator out could you talk? Thanks for always responding!
 
I type (and do digital painting) using a head pointer. This is a device that is mounted on top of my monitor and emits an invisible beam of light. The light bounces off a reflective dot on the brim of my ball cap and back to the device. In this way, the computer follows my head movements and moves the mouse cursor. I have a light touch switch taped to an old telephone headset. When I bulge my cheek "bullfrog style", I initiate a mouse click. I also have software (Dynavox System 4) that provides a customizable full screen keyboard with word prediction and other time saving features.

I can no longer speak, even if I could get air across my vocal chords. Although I annunciate clearly (my wife reads my lips), the muscles of my soft pallet sag, resulting in a nasal tone that makes me very difficult to understand.

Mike
cheek switch application.jpg
cheek switch detail.jpg
 
Thanks for posting that information and photos Mike. A picture is worth a thousand words and a good description from someone actually using the technology sure helps. AL.
 
Thanks Mike

Thanks for the pics and explaining that to me, hope all is well!
 
Hey Mike. Digital painting sounds like something I might like to try. Got any examples you care to share? Cindy
 
Hi Cindy,

Try clicking here to see all my paintings. There are two galleries; photo-realism and abstract. Each gallery has three pages. If that doesn't work, let me know and I will post some here.

Mike
 
Cool! I didn't even notice the gallery the first time I visited your site. I think I already know how to do this sort of thing. I have a painting I did in graghics class of a Native American child in full dress. I took the photo in the late 1980's when we visited a festival in Maine. I should dig out the digital I made and post it. Maybe I will get around to that one fo these days.
 
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