[david-z]

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. That led me to see a pulmonologist, get a sleep study, and get a BiPAP. The sleep study wasn’t too bad considering, especially since I sleep during the day and had the study then also, so I had the place all to myself.

[david-z]

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/

[david-z]

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

Kills on Wheels

[david-z]

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 by humming.

I don’t know whether others would find it useful, but it’s worked well for me.

[david-z]

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

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

[david-z]

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.

[david-z]

I’d suggest a touchpad.

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

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

[david-z]

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

[david-z]

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 had my spinal fusion as a kid. I was naturally completely uninterested in doing the lung exercises with the spirometer. However, if you set up the app to hold the “walk forward” key in video games, you only need to use a mouse or touchpad to “steer” or look around, and in order to move in the game, you’re induced to take deep breaths and long sustained exhales. Who knows what my vital capacity would be today if I’d been tricked into exercising my lungs back then.

[david-z]

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 fast before the blood draw? By my calculations, my diet has ~1500% of recommended B12, but there’s no listed maximum for B12.

[david-z]

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

[david-z]

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

[david-z]

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 numbers, and you’re good!

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

I considered Compleat, but never got around to trying it before my current diet, which I’m pretty happy with and hesitant to mess with. I’m getting ~40% of my calories from Jevity, ~50% from Vivonex TEN, and ~10% from complex carbohydrate powder, plus a powder vitamin and assorted additional supplements. So a protein/carb/fat breakdown of ~15%/70%/10%. I have spreadsheets mapping it all out.

Let me know if you want more details about either.

Kelly:

Thanks for the recommendation; I’ll look into it. I’m curious, but I hate to mess with my diet when things are going okay. BTW, I’m not philosophically opposed to pumping myself full of “chemicals” vs “natural” stuff; I just try to find what works best for my body. Better living through modern chemistry!

[david-z]

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.

[david-z]

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 is simpler and works much better for me. It operates more as voice-driven keyboard, where you spell out each word (with the NATO alphabet or something like it), plus a mouse mode. Other commands can also be added, but that is more complicated.

It’s hacked together, not a polished product, and it takes some work to set up, but I could help you if you’re interested. It currently requires Windows.

[david-z]

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, but I haven’t tried it.
https://smile.amazon.com/gp/product/B01ENB20LI/
https://store.sprytherapeutics.com/collections/spry/products/spry-recovery

[david-z]

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.

[david-z]

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

[david-z]

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 for administration.

[david-z]

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?

[david-z]

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

[david-z]

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 it incorporates the major ideas, while being much easier to mix up & feed with. Mostly I just felt good enough that I didn’t feel like changing more.

Be warned that you need significant vitamins & minerals supplements to be balanced. A great site for that is:

https://www.completefoods.co/

[david-z]

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 amino-acid diet, however, and found that it agrees with me much better (less feeling bloating), and made bowel management much easier as well.

Also, the Mini-ONE button balloon is supposedly shaped better to avoid leaking.

[david-z]

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.