Do all ALS people have to get a PEG?

[designdiva]

I think all of these things must be so hard for a person to learn to accept, no one would "want" these things but sometimes they are the lesser of two evils. It was hard for me as well as a CALS to watch him go through all these things and letting him make decisions I knew weren't particularly helping his situation. As much as it upset and infuriated me at times I refused to argue much over it, I would just research and provide info and let him make the call. As hard as it was I am thankful now that I didn't spend my energy arguing and that regardless of the consequences the choices he made were ultimately his for as long as possible. Since he is gone now it is easy to feel guilty about everything, whether it had anything to do with me or not, and I am glad I don't have a ton of forced decisions and drawn out arguments on my conscience.

 

[Barbie]

Oh Tillie,,,

 

[affected]

designdiva, your words resonated so well with me, thank you

It's a place I've been really coming to recently, and I believe that when this is over I will feel much the same. Arguing takes too much energy that can be put into loving.

I so understand that none of this is what he wants and he is struggling to make choices between things he doesn't want, and that is why I'm learning to just let him do this, regardless of what I think a choice should be. Who knows if I would even be right anyway?

thanks Barbie, those 2 words were all you needed to say

 

[hangingon1]

I went through this last year with my late wife. No one can empathize with you like someone who has been there. It was by far the hardest thing I have ever been through. My heart and prayers go out to you.

 

[lgelb]

Just a reminder that with a completely transabdominal approach for the tube (actually a PRG when done in Radiology), the FVC is not as large an issue as the procedure can be completed while using BiPAP. There are studies reporting very low and unmeasurable FVCs with this version of the placement, e.g. Percutaneous radiologic gastrostomy in... [Arch Phys Med Rehabil. 2009] - PubMed - NCBI