The endless todo list shortens v2.0

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JohnHMich

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It has been awhile (June) since I posted anything. Since then, her ALS score has dropped to 29 which seems lower than I would have expected. This is in part because in that time, we installed a 2x previously owned stair lift, received her power wheel chair, got a used wheelchair vehicle (a very cute Kia Soul), and have made most of the downstairs safe for the wheelchair. She can still eat, sleep, shower, toilet, dress and the like with minimal assistance. She isn't tied to the chair yet, but the distance she can walk with a rollator gets shorter and shorter. And no steps. Speech is still fine. Breathing is still unimpaired. I think the doc is scoring her conservatively, but that just may be denial on my part.
 

lgelb

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Sounds like you've been busy. You can do your own scoring if that matters to you or her, and see how it nets out. I came up with 39 based on your report but missing some data.

But her treatment and really her progression aren't tied to that scale at all.

We treat people, not numbers.

Try not to think about "tied to the chair." The chair is more freedom if you let it be, even for spins around the block.

Best,
Laurie
 

JohnHMich

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We are both engineers, so data provides comfort or control or the illusion of those, I guess. I score her at 34. The chair comment refers to her general resistance to any assistance. The walker, gait belt and cough box have been slowly adopted, for example. She has to be pretty tired to use the chair.
 

lgelb

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I understand. She will come to see the chair for what it is. The key is not to fall.
 

lgg

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What is an ALS score and how is it determined? Better yet, what does it mean? My PALS was diagnosed almost exactly 3 years ago. Progression was really slow until this past February. Unfortunately, because of COVID he hasn’t physically seen his neurologist since Jan 2. It’s very frustrating. His lung capacity is now 27. The only thing he can do now is talk and swallow - thank goodness. I, too, am a numbers person. In our situation it may give me insight to our future.
 

lgelb

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This is the instrument used (ALSFRS-R is the formal name of the scale). Any numbers person will quake at the categorical scale -- sorry about that. But you can score it yourself.

Is he on BiPAP, lgg?
 

lgg

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Thank you for this information. My PALS scored an 18. Yes, he’s on a bi-pap, always at night and intermittently during the day.
 

BlsdMama

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She sounds stubborn like me - I like her already. 😉 You’re definitely making progress in installing and using equipment. I got my chair about a year ago and used it as a piece of obtrusive furniture to glare at for several months. I acclimated to it slowly and then in one big jump. The big jump is permanently tattooed in the middle of my forehead in the form of a 4.5” scar. I look a little like Harry Potter. 👀 You can share my story. Likely it won’t move her, lol, it wouldn’t have me... but maybe it’s worth a shot. I found out real quick I’m more vain than I realized and I’d rather not repeat.
 

affected

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@BlsdMama we have always said here - you look far more refined and sophisticated in a wheelchair, than face planted on the pavement 💜🤭 it's so true
 

JohnHMich

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We might have hit an inflection point. We used the chair all day. Used it to go to the local aquarium and walk/roll along the paved trail near the beach.

Next step could be learning how to do a pivot transfer.

Thanks for the post!
 

jonico

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Hi John,

The pivot transfer is a wonderful thing. We actually did it successfully as our primary transfer method for about 4 1/2 years. Do you already have your pivot disc? We found the 18" version to be optimal (rather than 13" or 15") for making sure there is room for your toes on there once you have your wife standing....Jon
 

JohnHMich

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No discs yet. We still have a lot of transferring that is done ad hoc. From the walker on the 2nd floor to the stair lift, to another walker (or the power chair). We do have a transfer bench in the shower.

One peculiarity of our power chair is how little storage there is, she likes the rollator because of the seat/shelf to move stuff around. Seems like there ought to be a fold away desk/tray for the chair...
 
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