[david-z]

The device I use is the USB-UIRT; I have 2 and they work great. It used be available on Amazon, but apparently now only direct from the creator (and slightly more expensive). It can control any number of IR devices, and can either learn the commands or you can usually find them online. It can also receive IR commands to allow you to control your computer with any IR remote control. Regarding location, you should be able use USB extension cables if desired, plus you can attach 1 separate IR emitter. It’s manufactured by a one-man shop, so no guarantees, but it’s worked great for me.

http://www.usbuirt.com/

The software I use to control the USB-UIRT is EventGhost. It may look intimidating (it’s incredibly flexible), but it’s not that complicated: it responds to “events” with “actions”. I could give you a configuration file to start with, and talk you through what to do. The amount of work mostly depends on how many buttons/devices you want to control.

http://www.eventghost.net/

How do you control EventGhost? With pretty much anything. If you want to use a smartphone, you can setup an app to do so over your wifi network.

[david-z]

My Primary is just a generic doc, but he figures I’m the expert in my own health, listens to what I need, and is easy to work with. Really what you need in a Primary. And only a 5min drive away!

[david-z]

First, some wheelchair controllers can learn & send IR commands.

Also, there’s this: https://www.ablenetinc.com/relax

But the price on that is absolute robbery. The parts cost less than 1/10th of price, and building & programming such a device isn’t hard for a hobbyist.

Even easier, a (pre-made) USB IR device for your computer costs $50, can learn & send IR commands, and can be controlled any of the myriad ways you can control a computer (including via smartphone, or voice). Let me know you’d like more info.

[david-z]

One tip: the OraStretch helps significantly with opening the jaw, although its price is absurd. I stretch daily prior to a dentist visit, then immediately before the procedure. My hygienist says it makes a big difference.

http://www.craniorehab.com/orastretch-press-jaw-motion-rehab.html

[david-z]

Carving memory foam is great, but I’ve found this really helpful as well. It was ~$100 direct from manufacturer.

http://www.molnlycke.us/turning-and-positioning-system/molnlycke-z-flo-positioner/

[david-z]

I’d be very interested in such experiences as well.

[david-z]

I’ve found this site useful for seating/padding supplies.

https://www.sunmatecushions.com/

[david-z]

There’s also this (also available elsewhere), which doesn’t need to be attached to a computer.

https://www.amazon.com/Broadlink-Smart-Home-Universal-Controller/dp/B01N1HKMDW

I have no experience with it, and the reviews are iffy. But I’d be tempted to try it myself, especially since I think I could write my own app for it that might work better, except I already have my setup working well.

[david-z]

Wheelchair controllers:

http://www.cw-industrialgroup.com/Products/Mobility-Vehicle-Solutions/R-net/Omni-Control-Interface

https://permobilus.com/product/permobil-joystick-module/

Other manufacturers have similar. I’ll detail the computer device in my next message.

[david-z]

Assuming the device is physically installed, it may still need enabled in a deeper menu in the chair electronics. Or, it might just be listed under a more generic name like “Device 1”. And yeah, I know what you mean about not wanting to mess around without a net!

[david-z]

Permobil bluetooth info:

https://www.youtube.com/watch?v=tEm3tMWizVE

https://permobilus.com/wp-content/uploads/2017/01/R-net-Bluetooth-Manual-SK79614-05.pdf

 

[david-z]

Ryan, if don’t mind my asking: how did you discover that you had metabolic acidosis, and what did you do to resolve it?

[david-z]

I’ve never found doctors to provide much insight for my SMA. I pretty much just cold-call a specialist when I need a prescription for something that I already determined I need. I’m unsure of how I’d find a neurologist or pulmonologist that are knowledgeable about SMA if/when I need to.

[david-z]

Fascinating info; thanks for the post, Emma!

[david-z]

Fortunately, I don’t have too much trouble with irritation. I just use thin gauze and some pain-relieving antibiotic (mostly just out of habit).

[david-z]

Sorry you weren’t able to get a Mini-ONE; I definitely recommend it. I only recently started replacing mine at home, but I always ordered the Mini-ONE myself from my supplier with the rest of my enteral supplies (making sure to order the correct size), and brought it with me to the hospital. The doctor would look at it quizzically, see (with my encouragement) that it’s the same basic design/procedure as their Mic-key, and install it. There was never a problem, other than their initial ignorance about it. The manufacturer would probably be happy to help:

https://www.appliedmedical.net/enteral/minione/

[david-z]

You can mold/use it however you want. I just start out with it flattened, and have my PCA push down under where my ear is pressing.

[david-z]

Have you tried PC games with a touchpad as a mouse? Many only need that, and the sensitivity can usually be set very high.

Plus, you can use speech recognition software to do keys. I’ve set it up so I just yell “alpha” to tap A, et cetera.

Lastly, I’ve written some software so when I hum, it simulates holding a key as long as I sustain the humming. That way, you can “steer” with a touchpad and move forward by humming.

[david-z]

Speaking of heated, I just heard of this:

https://www.chilitechnology.com/

[david-z]

Thanks for the suggestions on the Cough Assist. It’s one of many things I probably should be doing but am not.

I believe the frequency of changing the Mini-ONE is the same as the Mic-key.

I did a sleep study before getting the iVAPS/BiPAP, but it wasn’t overly difficult. It showed clearly that the iVAPS mode (which I’d already researched and decided to pursue) solved my problems, while the standard BiPAP mode didn’t. Yes, I just use a nasal mask; like you, I’m wary of the loss of control with a full face mask. I got used to iVAPS surprisingly quickly: it doesn’t take long at all to feel natural, and soon it feels strange without it.

[david-z]

I just use a normal bed: an old sleep number air mattress. I also have an extra soft memory foam mattress topper, however, which makes a big difference.

https://www.mattresstopper.com/product/gel-swirl-memory-foam-topper/

[david-z]

Well, I’m a hermit so I don’t go to conferences, but I’ll see about packaging it up and writing some instructions for others to try.

[david-z]

I spend much more time stretching out in bed now that I can use a computer easily from there. I’m actually more productive there since I can talk more easily/clearly and thus “type” more quickly via voice recognition, and it’s not difficult to setup a touchpad to serve as a mouse if desired. It’s hard to beat for comfort.

[david-z]

Fantastic collection of essays by female author with SMA. One was in the NYTimes (https://www.google.com/search?q=Harriet+McBryde+Johnson+nytimes).

Too Late to Die Young: Nearly True Tales from a Life
by Harriet McBryde Johnson

https://www.goodreads.com/book/show/476491.Too_Late_to_Die_Young