Fall and a ...rant?

[Ceelea]

Innocence lost, perhaps?

Mon took a nasty fall and banged up her head and wrist on Saturday. One eye swelled shut, purple down onw side of her face, really unstable. When she was still, well, wonky and having extra difficulty walking today, I took her in to the hospital where she goes to clinic.

While I'm pleased to know she didn't break anything, we got lots of repeat questions and no answers. Clinic neurologist on call came down with 2 students and ran her through the neuro stuff, when we asked if he could tell us anything he sort of looked down his nose and repeated what I now call the "snowflake" mantra. On top of which, apparently they haven't got her June clinic visit on their calendar.

I'm wondering what their purpose actually is? We have asked a third tine for a referral for an als-aware PT, they seem to take lots of observations, but they don't seem to do much. ALS rep stopped by with tshirts, but the rest I Appear to be doing and researching. (This being the rant part).

Other than having them do a wheel chair fitting when they will, what is their purpose? I feel like I'm trying to order a hamburger at a chicken stand.

 

[Diane H]

It is a tiny technical point and won't solve a thing if you have a lousy clinic staff, but the person who helps order AFO’s, walkers, wheelchair, and other equipment is an Occupational Therapist not a physical therapist. In a clinic setting you should be automatically seen by the right person without having to know that. I mention it only in case you have to find someone on your own. ...And I wouldn't expect the neurologist to know who to send you to. Well, I believe he or she should know, but have learned not to expect much!

 

[Ceelea]

Thanks! I just know that our equipment guy said to get the fitting done at clinic next time and mom needs some pt. Getting it clear still!

 

[soonerwife]

Ugh! So sorry to hear about mom's fall. This disease is so frustrating. It is alot to figure out. Maybe get ahold of the local MDA association? They may have some loaner equipment to send out what you are waiting for clinic?

 

[lgelb]

Diane,
In some clinics, the PT would handle mobility equipment. In others, it would be an OT. Also, in some countries, OTs dominate and in others it's PTs.

There is a US specialist designation (ATP) that some PTs get, some OTs get, etc. Of course, at an ALS clinic, no one is necessarily so certified, another reason why ATPs at DME firms generally spec out the chair, which Medicare requires. The doc still has to sign the order, but it's a formality.

Ceelea, you don't have to wait for your current clinic to start the wheelchair process. As others have said, ask ALSA about a loaner. Then if you're interested in other options, check your mom's plan network and you can call a DME directly, who can recommend another clinic for order-signing purposes. Someone should be very happy to sell you a power chair. There is also a "find an ATP" function at resna.org. As a reminder, here is an ALS clinic map.

 

[Ceelea]

I wanted to follow up here, because I think we found where the gap was in communication. In-home OT and PT started last week and it's been like the sun shining in. The ALS clinic sent their people to us and each of them were shocked we had taken so long to get them here. They just shook their heads when I told them we had been asking since March. I really think we just slipped through a gap somewhere (though I do notice mom has a new primary doc at the clinic).

Now we have questions being answered, guidance on so many things and, if those answers and guidance are a bit terrifying at times, it's better than the vague "snowflake mantra"

And of course, there's the very intimidating PWC loaner sitting like an elephant in the living room after Friday's fitting.

In short, tons of information is nerve-wracking, but so much better than winging this on our own! As always, thanks to all here for your replies and shared experiences!

-- cee

 

[affected]

I'm so glad it has turned around Cee, even if now it's almost too much at once.

I found our in-home OT and PT invaluable, never be afraid to ask them lots of questions as they are there seeing your own situation.