I feel you on this challenge. I lost my ability to type by hand about a decade ago and had to transition completely to speech recognition software.

My situation was unique. As an experienced computer programmer, I ended up taking matters into my own hands (figuratively speaking). The existing commercial solutions couldn’t understand my speech…

Read more

I found Dragon to not work well for me either. It’s partly due to my unusual/weak voice, but also because of all of Dragon’s built-in commands that can’t be disabled, which give it too many choices to make when trying to recognize your speech and leads to many misrecognitions.

Instead, I basically wrote my own speech recognition software that… Read more

I think I got the Z4 “Ancillary Positioner” (11.5 x 19.5in). I phoned the company and got referred to someone at 866-293-8691 to purchase it. Amazon has a nice thick cover in a similar size that’s good for dissipating heat buildup from the plastic. I’ve also heard of the Spry pillow, which appears similar, and may come in that CureSMA package,… Read more

For what it’s worth, a data-logging-capable pulse/ox can be had for $60-120 online. It’s not too hard to use.

If you’re on the fence, you could do what I did. Not wanting to go through a sleep study without cause, I bought a pulse/ox with data logging to record second-by-second data throughout the night. (Let me know if you want more info.) I saw my ox was dipping at times and my pulse would start racing, so I never was getting good restful sleep.… Read more

Finding the right mask is key. And don’t be afraid to use different headgear than what comes with your mask.

Also, I haven’t tried this, but it looks interesting: https://bleepsleep.com/

Netflix has a good Hungarian (subtitled) movie with the lead actors having real disabilities.

Kills on Wheels

You can use speech recognition software to press keys. I’ve set my computer up so I just say “alpha” to tap A, et cetera. It’s not too difficult to get a basic setup.

Also, 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 mouse/touchpad and move forward… Read more

I use this, which works well since I prefer to lean back.

http://www.drivemedical.com/index.php/otter-bathing-system-927.html

They work well: easy to position, require little movement, no pressure force (like a smartphone), and you can configure it to tap instead of clicking a button. I also made a little app if you can move better left-right than up-down that equalizes the movement.

I’d suggest a touchpad.

https://smile.amazon.com/gp/product/B0007T27BE/

Velcro backing: http://www.ergonomictouchpad.com/

Some sensitive joystick options:

https://stealthproducts.com/pages/stealth-proportional-drives/

http://www.sunrisemedical.com/power-wheelchairs/electronics/mini-proportional-joysticks

http://www.sunrisemedical.com/power-wheelchairs/electronics/additional-proportional-drive-controls/switch-it-touchdrive2

https://www.atandme.com/?p=161

I appreciate your proactive stance. I likewise research deeply, then tell my doctor what I need/want. Good luck!

I wrote a computer app that emulates holding down a key/button whenever & as long as I hum (heard by the microphone). It’s great for quickly skimming through news, webpages, etc, where I have it scroll down when I hum. Much easier than having to reach to do it manually.

But I’ve thought it’d really have been perfect if I’d had it back when I… Read more

I’m looking forward to new treatments that are easier and/or less frequent to administer. I’m hopeful that there’s continued urgency due to: (1) a clear market evidenced by Biogen’s success, but even more so (2) regulators & payers are likely desperate for competition to combat Spinraza’s notoriously huge price tag and infrastructure necessary… Read more

I’ve only had my B12 tested once, but it did come back slightly high at 1200. My PCP was unconcerned, just shrugging and saying I’d pee out any excess. The results did have a note “high doses of biotin taken within 8 hours of blood collection may interfere with the results of this assay”, so maybe it’s especially affected by how much you… Read more

Very enlightening; thanks for posting this info! I certainly can find it difficult to breathe if my neck isn’t positioned right. I assume your surgery was performed under general anesthesia?

I haven’t heard about throat surgery with SMA. What specific surgery was it? Do you know the technical medical name for it?

Do have any problems with clogging when using Real Food Blends?

Heh, I’ve grown to expect to have do all the research/work for my medical stuff, and just tell the doctors what to do.

I ended up on this diet after reading suggestions on the AA Diet website & Facebook SMA Diet group, researching general nutrition deeply, and trying a few ratios out. It’s not the orthodox AA Diet exactly, but I think… Read more

I use my own custom speech recognition, so I don’t have experience with this product for Dragon, but I’ve read that the maker offers it free to people with disabilities.

http://shop.knowbrainer.com/store/pc/viewCategories.asp?idCategory=4

DeAnn:

Ordering your own button from your DME is really pretty simple. Mini-one and Mic-key both use the same sizing with two numbers: the tube diameter (measured in F) and the stoma length (measured in cm). Both numbers are written in bold on the button itself (around the port). Just get a Mini-one balloon button kit with the same two… Read more

Thanks for posting which labs your dietitian ordered! Interesting that low vitamin D is common. Please post any suggestions they give.

FWIW, I tried a different brand of blenderized formula (http://www.functionalformularies.com/) briefly, and it didn’t agree with me at all, so I stuck with Jevity. I’ve since switched partially to an… Read more

After you get your schedule but before classes start, it’s a good idea to visit the classroom for each of your classes, to scout out routes to, seating in, etc.

Buying random electronics direct from China is fun. It’s always cheap, and half the time, it works out great! The other half of the time, it’s a mess, but you pays your money and you takes your chances.

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… Read more

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… Read more

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.

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!

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

 

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!

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,… Read more

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

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

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.

Fascinating info; thanks for the post, Emma!

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).

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… Read more

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.

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/

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… Read more

Speaking of heated, I just heard of this:

https://www.chilitechnology.com/

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

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… Read more

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/

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.

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.

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

https://www.sunmatecushions.com/

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