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[SMAFriends] Tubes

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Hello,

I just wanted to know how do you guys feel about getting a feeding tube or/and

a trachea? 

I'm not swallowing well and the test I had done last week showed that I aspirate

thin liquids and anything thicker gets stuck  in my throat.

So, the recommendation I got was to either get a feeding tube down my nose or

cut me stomach open and places a tube there.  

I am supposed to be on a strict  " nectar consistency " diet, which at present only

includes soda pop and Ensure.  I aspirated the Ensure too when I got home.  

If I choose not to follow the diet, I'm at risk for choking or aspirating so

much that I'll develop serious phneumonia, which = Death!

I'm eating as I ate before.  I called my MDA Neurologist and he told me that he

doesn't blame me for not wanting a feeding tube or any other tubes because they

are " rather unpleasant. "

There is an option to try a swallowing therapy which consists of my throat being

zapped with electrodes to strengthen my swallowing muscles.  Has anyone ever had

that therapy?  Does it work for SMA-2 people?  Is it safe?  Or could it make it

worse?

As of now, I refuse to get any holes in me that I wasn't born with... excluding

my pierced ears, of course. 

Any other options out there that I am not aware of ?

  

God Bless,

Maggie

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