lump in throat, beginning of bulbar?

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maf

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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.
 

Jamiet

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Not likely, usually impared speach, swallwoing rather than a lump.
 

maf

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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!
 

Jamiet

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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!
 

Meg1

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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.
 

quadbliss

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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
 

maf

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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!
 

quadbliss

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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
 

Al

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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.
 

maf

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Thanks Mike

Thanks for the pics and explaining that to me, hope all is well!
 

CindyM

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Hey Mike. Digital painting sounds like something I might like to try. Got any examples you care to share? Cindy
 

quadbliss

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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
 

CindyM

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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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