Wearable tech

[anna]

I’m not much help but I know for sure that, even if we were completely immobile (which we’re not), the heart rate and breathing when you are asleep is entirely different than when you are awake. So, I guess it wouldn’t skew results.

It can’t be as accurate as a sleep study, but perhaps it could detect the possibility of apnea. My pulmonologist advises against relying on these apps, but doctors typically trust no one and nothing but themselves lol!

[deann-r]

I’ve considered it as well. Just for heart rate and O2 levels it might be worth it. Wish the good ones weren’t so expensive. Mom had a fit bit but the band got loose & she lost it.

[micaela-macdougall]

Yeah, that’s kind of what I’m thinking.  I love data, but I just don’t think it’s worth the high price.  For now, I’ll watch and see where the tech is headed.  Maybe someday they’ll add more features that will be more useful.

[alyssa-silva]

Hey! I don’t have any wearable tech but that’s a great idea. Do you struggle with fatigue, if you don’t mind me asking? I do and can’t for the life of me figure out why.

[micaela-macdougall]

I don’t mind!  Yes, I often have bad fatigue.  It’s funny to me how little people realize that fatigue is a much bigger barrier to working than just being a wheelchair user.  I’ve actually been having a really bad bout of fatigue this whole week (a combo of stressors in my personal life and the time change), which probably motivated this question.

[alyssa-silva]

I have really bad fatigue as well and can’t figure out why. I mean, I know there are definitely factors contributing, including stress and the time change like you. But I feel like it has a huge impact on my quality of life and that’s what’s puzzling to me. I guess I really haven’t explored it in depth to figure out an answer.

[micaela-macdougall]

Yeah, I wish I had more answers too, other than just blaming it on SMA.  After doing some more research, I found a Garmin tracker on the lower end of the price range.  Apparently, Garmin’s body battery feature gets a lot of praise from the chronic fatigue community.  I’m going to try it out for a few weeks, and I’ll try to remember to post on here how it goes.

[deann-r]

Yes, let us know how you like it.

[dennis-turner]

I am struggling with massive fatigue the last two weeks, but I am ascribing it to the fact that my next Spinraza injection is due next week. It is bad enough that I am simply trying to get through each day and letting most things go for now. Catch-up after I am better able to focus will, be a bear.

My wife has a simple fitbit which I have tried, it usually tries to tell me I haven’t taken any steps (wheelchair) that my heartrate is low, and that I am not moving, which is all true.

My hope is that once I have had my next injection I will begin to be able to follow things again.

[micaela-macdougall]

Thought I’d post a little update here.

I’ve had my Garmin Vivosmart 5 for about 6 weeks, and I really like it.

• I’ve learned that my “body battery” (Garmin’s proprietary algorithm) is consistently low and my “stress” (based on HRV) is consistently high.  So far those numbers aren’t precise enough that I could use them to predict my fatigue for the day, but it is nice to see data confirmation that I am dealing with more fatigue than the average person.
• I’ve learned that doing my stander and PT exercises gets my heart rate high enough to count as cardio.  Turns out I’m more active than I thought!
• Not all the time, but when I’m reading in bed or sometimes when I’m especially fatigued, it will think I’m asleep when I’m not.  However, the app lets you adjust sleep time manually.
• The one button is too hard for me to push, but I can use the edge of my desk to push it if my wheelchair is tilted to just the right angle.  The button is only necessary for workouts or changing settings.  If I just want to see my current stats, I can just rotate my wrist a little (which is easier than I expected) or double tap the touchscreen (which takes a little pressure – but once it’s woken up, it’s a perfectly normal touchscreen).
• One surprising benefit is the alarm.  I get up at 8:30, but I set my alarm for 8:10.  It vibrates 10-20 times and then snoozes automatically without me having to do a thing – it repeats this every 10 minutes until I get up and turn it off.  I’ve found this to be a really nice way to wake up gradually.

So I’m enjoying it.  Even though I’m not sure how much it’s actually changing anything, having this data makes me feel more in control of my body, which is worth it for me.

[alyssa-silva]

having this data makes me feel more in control of my body, which is worth it for me.

I feel this. Glad you’re enjoying it. I’m afraid of what mine would say haha. My body battery would definitely be the lowest of lows right now. Winter always wears me down.

[deann-r]

Thanks for the update. I’ve always love gadgets and it’s interesting hearing how it’s working for you. From what you said I gather you can check your heartrate. What about oxygen levels? The alarm feature sounds like a great way to start the day. If you discover any other cool features you’ll have to let us know!

[micaela-macdougall]

Yep, you can check heart rate, respiratory rate, and blood oxygen levels.  I don’t know for sure how accurate they are, but the numbers are generally comparable to my vitals at my doctors appointments.