[david-z]

Thanks for the info! What position do you have to be in for the cervical injection? On your side? Do you have to hold your neck a certain way?

[david-z]

I definitely agree with your concerns, DeAnn. One tip: the OraStretch helps significantly with opening the jaw, although its price is absurd. I stretch daily prior to the dentist visit, then immediately before the procedure.

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

[david-z]

I don’t have/use Alexa, mostly because I’ve been programming my own customized voice-activated system since before Alexa was available. I use it for myriad things.

• Calling for help (of varying volume depending on how conscious my PCA is) via devices elsewhere in the house
• Calling for help in an emergency, where it will automatically phone/SMS a list of people (I’ve never actually used this but it lets me rest easy)
• Controlling TV (serves as my computer monitor)
• Controlling computer in general
• Controlling lighting, fans, HVAC thermostat (Ecobee), suction
• A “dead man’s switch” that raises an alarm if my computer fails somehow (or if the cat steals the microphone)

It lets me do pretty much anything, from any position, at any time. To create a machine to work your will is to create your destiny.

[david-z]

As an alternative to an on-screen keyboard, Dasher is great.

http://www.inference.org.uk/dasher/

[david-z]

AA diet: I’m still a little skeptical of it, and basically all I’ve done is reduce the percentage of calories from fat and protein, and added some elemental formula. But hey, I noticed some improvements, and who wants to mess with what works? I wouldn’t think Spinraza negates the theory of the AA diet, since Spinraza only targets the central nervous system and not other systems where SMA may affect metabolism.

“Feeding”: You don’t like to play vampire, add some red food coloring and an “O negative” label to the bag, and prepare to feed?

Mini-ONE: I know what you mean clueless clinics: the hospital I was at when I needed to get the G-tube didn’t even believe it could be installed without general anesthesia. Thankfully I found another hospital that considered it routine. I don’t remember how I stumbled across the Mini-ONE online. It is just like the Mic-key (the extension sets are even interchangeable), other than being a more streamlined shape and made out of a more flexible silicone (which I think they say can last longer but is still “recommended” to be replaced ~6 months).

Aromas: Strength varies; of the ones I’ve tried, I’d recommend blueberry or strawberry.

[david-z]

I’m 36 and got one ~10 years ago, when I suddenly felt unable to swallow safely. I currently use a Mini-ONE balloon button, which has the same basic design as the Mic-key, but is more compact, flexible, and therefore comfortable–I highly recommend it. I use a pump, but at a 400 ml/hr rate, so it’s basically just a leisurely bolus, done 5 times a day. I find it to mimic the satiatity of a meal without being so fast as to cause stomach discomfort. After getting the tube, I haven’t eaten by mouth. I drank for a few years, but then that too felt overly risky.

On the plus side, I’ve had zero rattle and zero chest infections since getting the tube, though perhaps I’m overly paranoid about attempting any risky swallowing. I’ve recently tried partially transitioning to the “amino acid diet”, and found some minor benefits to digestion and strength. Also–and this may sound crazy–I’ve discovered that adding essential oil “flavorings” can improve the experience of tube feeding through the aroma alone, since much of “taste” is actually smell.

https://www.olivenation.com/nsearch/?q=Flavor+Fountain

http://www.lorannoils.com/flavor-fountain-1-7-ounce-size

No Spinraza for me. I’m not eager to attempt the injections with my spinal fusion. Instead, I’m waiting to see how it actually affects adults, while hoping some of the other treatments get approved for oral or intravenous administration.

I’m glad to see this forum; it’d be nice to have a resource for adults with SMA.

[david-z]

Cough Assist: I’m kinda embarrassed to admit I’ve had one for 20+ years and never really used it. I have no idea what settings to use if I ever really need it. DeAnn, do you have any suggestions for a Cough Assist newbie?

[david-z]

Mini-ONE: It is a bit smaller, but the major difference is that it’s made of a softer silicone, so it flexes more easily with your abdomen, making it much more comfortable. I noticed the improvement immediately, and there’s no downside.

BiPAP: Don’t wait too long. When I finally got an iVAPS (a fancy BiPAP) for sleep, it made an immediate, huge difference. Without conscious awareness, poor breathing during sleep was making it less than restful, leading to daytime fatigue and weight loss. And really, who doesn’t want to kick back after a long day, take a load off, and let someone (thing) else do the breathing?

[david-z]

Hmm, it’s not as cool to describe or show off, but for sheer time savings, it’s hard to beat simply controlling my computer keyboard & mouse via voice from bed. Combined with using a nice big TV as a screen, I can do anything while stretching out, for example reading this forum and writing this reply. No need to get my arm propped just the right way. I’ve saved countless hours of otherwise dead time.

The hardware for good voice recognition on PC isn’t expensive: just a good USB sound card ($25) and an appropriate microphone (varies but decent ones as low as $5 if you just want to experiment). The base software I use is free (Windows only), but I’ve heavily customized/personalized/extended it. I feel like I should generalize & distribute it for others, but perhaps my usage is idiosyncratic, and it’s much more fun to build than to document.

[david-z]

Ha, I know what you mean about the importance of doctors/nurses/etc listening. It’s so easy for things to get out of control at the hospital. “No, don’t move my leg that way!”

[david-z]

I have a couple degrees in computer science and I’ve been involved with electronics most of my life. Between the internet facilitating free flow of information, and cheap niche/custom hardware from China, now’s a great time to build stuff despite lacking utterly any dexterity.

[david-z]

I found normal voice recognition didn’t understand me well enough to be efficient. So I programmed my own specialized voice recognition, and mostly type by spelling with the NATO alphabet. It works well (and quickly with practice), and lets me use the computer from any position.

[david-z]

I too try to avoid adding extra air, so I always hold the extension tube under a running faucet to fill the tube with water (using a syringe would work too), then clamp & cap the tube, before connecting it to the button.