progression

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suziQ

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i feel like i am progressing fast 55 and was diagnosed with bulbar onset in october At that time everyone could understand me and i could eat most foods February i went to Arizona,,was still eating but slower and less people could understand me, did a lot of walking and hiking with no issues now no one can understand med i can eat m&ms ice cream and pudding. developed foot drop mildly when tired in April but could still walk well mid june i face planted because of the drop foot have a brace on that leg now Since July 1st my dog has pulled me down twice. afraid to walk now i mostly take him out the back of my apartment because there is no people or dogs. frustrated.. grammer issues due to typing with one hand Left wrist broke in first fall
 

KimT

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That's a lot. Is there someone who can walk your dog? I fell early on and was unable to walk for nearly six months. I sprained my "good" ankle. Progression is both scary and frustrating but you really have to protect yourself, as best you can, from falls.
It's odd you can still eat m&ms. I bet you could eat Greek yogurt with some pureed fruit for a change if that appeals to you.
Is your weight okay? Are you using BiPap or is your breathing good?
 

EricInLA

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That is frustrating indeed suziQ. You don't have to worry about grammar - we all get it. My right hand typing abilities are also slowly winding down which means after a few sentences all the words better have letters on the left side of the keyboard. There are some dog harnesses that make it easier to control your 4-legged friend, but generally if he is pulling you down it is not worth the risk of a fall because that speeds up progression. As far as eating, ice cream and m&ms are yummy but don't make a stellar diet. You can get all kinds of healthy stuff down in the form of a thick shake/smoothie. There are powders you can buy that help adjust the calories as needed. But generally progression sucks. The 'glass-half-full' approach is to be thankful for the abilities we still have.
 

Aaronmandevill

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I think any progression is scary but for bulbar it sounds either medium or slightly slower than average. Thats just from reading lots of studies and other peoples stories though. To give an idea of rapid progression I noticed I noticed twitching in calves with a bit of coughing after eating end of March. I now need a neck brace to hold my head up and cannot swallow solid foods like chicken breast or steak.

I agree with Eric about focusing on the positive, for me I can say, “today I can still walk and my hands still work. Also I can still speak.” Might not be true tomorrow but that’s what I have today.
 

suziQ

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PALS
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working on finding someone to help with my dog. He actually wears a no pull harness! still looses his mind when he sees another dog Breathing is okay. I use a bipap at night, weight is stable. i lost some but am trying to gain it back bot i can see that i have lost muscle

Most of my food goes through my feeding tube, just mourning eating.

i do try to focus on the positive, i can still walk and drive. went to the library yesterday. it has just benn a few frustrating weeks. when my body heels from the falls hopefully i will have a more positive outlook

my neck isn't feeling that strong either but so far i can still hold it up
 
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