Level of care to expect???

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Tomswife

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I will ask. We meet with Nurse Monday for preop re tube. She is NP. there is no other nurse. 4 doctors. I will find out.
 

Mary2

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Emory's website says they have 500 patients.
 

Clearwater AL

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Ok, I'll give in... apparently we can no longer tell "Could this be ALS'ers"... ALS is a rare disease.
I guess all these 500s here and there and big cities across the country add up.

Back to Tomswife's post above.
 

lgelb

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Jersey, you are right to hold out for the people that will do the best by you. If the PEG doesn't need to happen until you switch, there's no need to rush.
 

KimT

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I've been to two clinics in Florida. Vastly different as regards both care and response. Both were 2+ hours away. I decided early on that I would continue with one of them BUT get a team in place for respiratory, neurology, and pain management along with my GP who is local.

I'm so sorry you've had this experience.

When it comes time for a feeding tube, I'll go back to Mayo (Jax).
 

Tomswife

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BigH still causing delays. We need an order for an evaluation for a motorized wheelchair to be submitted to Kessler in NJ. I requested this two weeks ago and followed up several times.
I just spoke with Kessler. They still dont have the order. The order must include his physical evaluation from his doctor. So I cant ask our PCP to do this.
 
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MJT

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Tomswife- Our ALS Clinic experience has been wonderful. Calls are answered in 2 days, and emails are within hours. At all visits, we can see each specialist or decline if we don't feel the need. Our specialists are one step ahead of our questions, yet don't overwhelm us with what is to come. "It's time to consider PEG. If you opt for this, there are 3 appointments, and you may go to the first without commitment. Therefore, if you think you may be interested, I'd recommend you schedule the first appt. as they take a while to get."

If I were you, I'd start going up the chain of command to get the wheelchair order. Maybe a friend or relative could take this on? You and your PALS deserve a better experience than you are having, and you certainly don't need this added stress.
 

lgelb

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Yes, an ALS clinic should write the wheelchair order, but it doesn't have to be the one he started with. Wheelchair orders take a lot of communication, back-and-forth, and precision, so if those are question marks, it would likely be faster/better in the end to go with the clinic that takes that time.
 
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