What comes next?

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What comes next?

Postby jmstokes » Tue Oct 28, 2014 4:46 pm

I've seen this question posted now & then, but I've had a hard time gauging where we are at in our PSP process from the answers I've seen. Most have referenced patients with feeding tubes; but my dad has refused one, so it seems like he's on a different track.

July 2013 Diagnosis
Dec 2013 Surrendered driving
Jan 2014 Walker & moved to "catered living"

He can no longer walk more than a few steps alone without falling
He is out of breath and his legs seem to "stop working" when walking about half the length of a typical Target store
He can only sign his checks, with TREMENDOUS effort
He coughs and sprays food particles at every meal, sometimes between meals
He's expressed having a hard time getting out of bed and getting dressed/undressed

How long until he will need someone to help him transition between chair, walker, bed, shower, etc?
How long can he continue feeding himself- by that I mean getting food from his plate to his mouth.
How well do people trust the "Golbe" PSP clinical rating scale?

Thanks for your input, everyone.
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Re: What comes next?

Postby Robin » Tue Oct 28, 2014 8:28 pm

The symptom with relevance to your first question about needing help transitioning is that your dad cannot safely walk unaided. Right there that indicates that he should be receiving help now.

The symptom with some relevance to your second condition about physically being able to feed oneself is that your father has difficulty signing checks though using a utensil or fingers to grab food is different than writing. Sounds like the day is not too far away when he won't be able to feed himself.

What's there to trust or not trust about the PSP clinical rating scale. All research studies in PSP use the clinical rating scale, so researchers see the value.
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