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    • #22174

      I often find it amusing to reflect on how much technology we rely on each day. I am guilty of being far too dependent on my Google calendar, iPhone or email reminders for the daily tasks I need to remember. As a prime example: when I come down the stairs each morning I ask my Alexa device, “Alexa what is on my calendar today” and she rhymes off the meetings I have while I make coffee. Some may argue this is me being too dependent on technology, but the reality is, brain fog often impedes a PF patient’s ability to remember things.

      Last weekend I was teasing my cousin about her dependence on her Apple Watch, and about a recent episode where she accidentally notified 911 by holding down the index button by having her wrist bent against it too long. Not only did the Apple Watch notify 911 and send them her GPS coordinates, it also alerted all of her emergency phone contacts that she’d placed a 911 call (pending you have them set up in your Medical ID on iPhone). Understandably, everyone was texting my cousin in a panic and an “unknown caller” also came across her Apple Watch, which turned out to be 911 and she didn’t answer. While this scenario was comical because she didn’t mean to call 911 and alert everyone; it made me think of how beneficial the Apple Watch might be for someone living on their own with IPF.

      I love my iPhone and Apple Macbook, but had no interest in buying an Apple Watch because I didn’t think I needed one. After teasing my cousin and talking to my sister-in-law at the same time, we really got to thinking about how this device could assist me in an emergency. The Apple Watch also detects your heart rate and picks up on a sudden drop in your heart rate, plus it has fall detection. Therefore, if I fainted or suddenly felt unwell, the device can alert 911 for me (if I don’t reply to the nudge it sends asking to dismiss a call to 911 within 1 minute) and send the GPS coordinates. Plus it alerts those in my emergency contacts/Medical ID that a call has been placed. Not only would this be beneficial for when I am at home alone, it also would be good if I was walking my dog and suddenly became breathless or slipped on ice (which has happened before). I also wouldn’t have to have my phone within reach to answer a call back from 911, indicating I need help, I can reply using my watch.

      While I am not endorsing the Apple Watch in any way, and these truly are just my own observations about how I think this might be helpful; I wanted to share these features of the watch with other PF patients. I had no idea the capabilities of this device, and know I’ll be looking into buying one in the near future. Perhaps a good Christmas present idea?

      Do any of you use technology in an effort to increase your safety at home or while alone and living with IPF/PF?

    • #22188
      Duncan Fowler
      Participant

      The Apple watch also prompts you to take deep breaths several times a day.  That has to be good for us IPFers.

    • #22189
      Duncan Fowler
      Participant

      I do wish it would also give us our Blood O2 saturation.

      I have suggested this to Apple at

      https://www.apple.com/feedback/

      You can too.  Maybe if enough of us do that Apple will implement the idea.

    • #22191
      Suzanne R Brennan
      Participant

      I have an Apple watch and downloaded an app that measures the altitude. Living in Colorado means that I am almost always at 5280 ft (mile high city!) but I have used it in other locations as well as I sometimes need to bump up my POC if I am at higher altitudes and often don’t even have to use it at sea level or close to it.

      I do use the “breathe” function several times throughout the day. While I try to always breathe deeply, people with IPF tend to be more shallow breathers so it’s a good reminder to breathe deeply!

      I knew about the the medical ability but hadn’t thought about it in connection with my IPF but it would be most helpful in that situation so thanks for reminding me of that!

    • #22200
      Lorraine
      Participant

      I am a newbie iPhone convert, and do see an Apple watch in my future.

      I only made the switch to an iPhone on October 8th.  I have been retired for six years and during that time, I was using an old school smart-less flip phone. I needed to reboot, I was an emergency manager before retiring — and used a Blackberry, Nextel Direct Connect, cell phone, pager and walkie-talkie 24/7/365.

      I finally caved and loved that I joined the Apple family.

      That said, I am  now considering buying an Apple watch, for the reasons outlined above, also to have EKG testing available, since I am also a heart patient. Also, I was told the Apple watch 3 or 5 work without carrying the iPhone.

      I like having my personal assistant Siri available. Tracking my miles and steps. Scanning functionality. My calendar and so much more. Also enjoying Apple TV+ free for one year!

       

    • #22205

      Great idea Duncan, thanks for sharing the link where we can provide feedback to Apple! You’re right, maybe if enough of us do, they will consider this. I’ll submit my feedback.
      Charlene.

    • #22206

      Thanks for sharing your experience with the Apple Watch Suzanne! The more I hear about this device, from people with IPF and even those without it, I am more and more hopeful to get it for Christmas. I think even if I don’t, I will be making the purchase of one myself. The safety features of it are reassuring for me. Glad to hear of the “breathe” reminder feature as well, I didn’t know it did this.

      Happy holidays and thanks for sharing your experience with us.
      Charlene.

    • #22207

      Completely agree with you Lorraine – the more I learn about the Apple Watch, the more benefit I see in having one! Hope you’re enjoying the new iPhone, the capabilities of the new phones and the quality of things like photos continue to amaze me. I used mine underwater in Hawaii for snorkelling pictures and it look beautiful photos! The EKG function would also be really handy, along with the reminders to breathe regularly with the watch. If you get one in the near future, let me know your thoughts on it. I think I’ll end up with one as well.

      Sincerely,
      Charlene.

    • #22224
      Rod Danner
      Participant

      I had not really been interested in an Apple watch until the series 4 & 5.  The new capabilities will be useful and they keep adding more with each update. I agree that O2 saturation would be a real benefit. I will be seeing one under the tree for Christmas.  Be careful Lorraine, the quality and performance of your iPhone may lead you down a financially damaging path. I ended up so impressed with the iPhone that I pretty much joined the whole Apple ecosystem, replacing my PC with an iMac and my laptop with a Macbook and added an iPad.  The beauty of it is that they all work together wirelessly and fairly seamlessly. Enjoy your iPhone.

    • #22227
      Lorraine
      Participant

      Hi @rod-danner:  Thank you and yes, I can see how this could lead to a “financially damaging path” — you forgot to mention car play. LOL.

       

    • #22228
      Lorraine
      Participant

      Hi Charlene: Maybe a group FaceTime IPF chat is in our future. Ha.

    • #22229

      Hi @Lorraine,

      I hope you’re doing well!

      Wouldn’t that be great? I talked to PF News about a year ago about an online support group using a platform like Zoom but due to other projects, this one was kind of halted. There are a few online support groups out there if you’re ever interested in them, let me know and I can send you some links. Aside from that however, I’d love to do a FaceTime with you sometime! 🙂

      Warm regards,
      Charlene.

    • #22230

      Hi Rod,

      Thanks for your note regarding the Apple Watch! I am interested in hearing from others about their thoughts surrounding this expensive little gadget. Like you, I am also only interested in the series 4 & 5 for the medical capabilities of it. It is an expensive gift for me to ask for, so I don’t know if I’ll see one under the tree but I will definitely be getting one after the holidays if not. I think it’ll provide me with a lot of reassurance and comfort for sure. I agree with your messaging to Lorraine and the financial damage – I am also an Apple lover and use all of their devices: MacBook, iPad, iPhone etc. It’s just so useful to have them all “talk” to each other, as you say.

      Enjoy your new gadget when you get it!
      Regards,
      Char.

    • #22239
      Lorraine
      Participant

      Hi Charlene:

      I am doing well and hope you are too!

      Thank you for letting me know about available online support groups, I will let you know if/when I might be interested. I have been seeing a therapist 1:1 for a few months now and that has been helping (altho I still have my moments) and I am even socializing again.

      Happy holidays,

      Lorraine

    • #22282

      Hi @lorraine,

      I am slowly getting better – for about 5 weeks now I’ve been seriously plagued with various infections which have exhausted me and occasionally required hospitalization too. Happy to report that I am on the mend, though!

      Glad you’re seeking support as needed, I am 100% convinced none of us can do this alone and without the help of professionals from time to time. Good for you for seeking that support you need. If you ever are in need of others, do reach out. There are a lot of good people out there offering us assistance.

      Kind regards and happy holidays!
      Charlene.

    • #22286
      Lorraine
      Participant

      @charlene-marshall

      Hi Charlene:

      Glad to hear you are on the mend, but sorry to hear you had been sick and hospitalized.

      You will be the first to know if I am in need of additional support, I appreciate and value such resources. My therapy has made a difference!

      By the way it looks like I will be going to South Africa for a few weeks next year and perhaps another trip sooner. As you may remember, I have not traveled in a while because I did not want to travel alone. But I made a lot of new friends over the last 9 months from a meetup group and a couple of them have also been looking for travel buddies. Wo0-hoo.

      Happy Holidays and New Year.

      May the Roaring Twenties bring us good health, happiness and good times.

      Lorraine

       

    • #22290

      Hi Lorraine,

      Many thanks for your kind words about my recovery. Ironically, I think it might have been travelling to the PFF Summit that I contracted all of this. Working through it slowly, and glad to be starting to feel better! 🙂

      WONDERFUL news about your South Africa and other trips… how amazing is that? Thrilled you’ve met travel buddies and are making plans to see the world. I can’t wait to hear more about it when the plans are finalized. I do remember your desire to travel and so glad you’re seeking out opportunities to do that.

      Take good care, and happy holidays to you! Wishing you the best in 2020 🙂
      Charlene.

    • #22314
      Patricia Williams
      Participant

      I am amazed at the thread about the Apple Watch. I have been planning on getting one but now that I see what a help it will be I am ready to dive into one. Thank you for your caring words in this forum. I have learned so much. I am waiting for a call to set up oxygen therapy for exercise, housework and shopping. Looking forward to feeling better. So have a Merry Christmas and as one of your followers said, best of health in the “roaring 20’s”.

    • #22330

      Hi Patricia,

      So glad to hear the forums have been beneficial for you! Glad you’re part of this special community. Have you had the 02 set up yet?  Did you get an Apple Watch? I ended up with one for Christmas so I’ve been playing with it… lots of interesting health-focused programs/apps on it. I love the “breathe” feature, reminding us 2x per day (or more if desired) to focus on deep breathing. It has also been interesting to watch my sleep patterns!
      Cheers,
      Charlene.

    • #22337
      Lorraine
      Participant

      Hi Charlene:

      Glad to hear you received the Apple watch for Christmas!!!

      If you were on the naughty list, there would be no hope for the rest of us. 🙂

      Which watch did you get?, I am leaning toward the 5 if/when.

      Best wishes,

      Lorraine

       

       

    • #22339

      Hi Lorraine,

      Happy Holidays! I hope you had a good Christmas.

      I did end up getting the Apple Watch — must to my surprise, as they certainly aren’t cheap. I got the series 5 with a black leather band and rose gold face. It is quite pretty 🙂

      So far I haven’t figured out all the features of it, but the ECG feature is really neat and seeing your heart rhythm, along with the Breathe function. I also like the immediate access to calls and texts right on my wrist, but especially the touch of a button for 911 if need be. I was told that they invested in a Series 5 for me for the safety features of it, including fall detection. I likely would have upgraded to this one if I had gotten the 3 as well, just for the safety of it. It is pretty cool. Let me know if you get one!

      Char.

    • #22342
      Lorraine
      Participant

      Hi Charlene: Glad to hear you are styling with the Apple 5. I am liking the functionality of the watch more and more. If I do decide to get one, I will let you know. Wishing you the best, Lorraine

    • #22367

      And to you Lorraine, happy new year!
      Warm regards,
      Charlene

    • #22412
      Patricia Williams
      Participant

      Happy and Healthy New Year Charlene. Hope you are doing better. I did get the oxygen set up. After having 25 family members here for Christmas with eight of them spending the night I was pretty wore out. The oxygen company called me at 5:00 in the evening saying my Dr just called in my order. He was willing to come over that night. The house was a mess and so was I but I said bring it on. I sleep in it, I use it when I do housework, exercise and shop. I am resting this afternoon and have it on now. I feel better and look better. About the Apple Watch, there is an apple store in Louisville and I go there for my Dr. I will get it there. Looking forward to learning about it and what all it does. Stay well

       

    • #22425

      Hi Patricia,

      Happy New Year – thanks for writing! I’m really glad you got the 02 set up and that you’re noticing a difference, especially in how you feel. This must mean your body was in need of it, and I know when I put mine on too, I really feel a difference. Adjusting to it takes some time, but ultimately remember the benefit to your body and organs, especially the lungs. Kudos to you for rocking it so far 🙂

      Let me know if you get the Apple Watch and what you think of it. We can learn together! I really like mine, and the safety features of series 5 (fall detection, Emergency SOS at the touch of a button, the ECG feature) are all really comforting to me. Enjoy!
      Char.

    • #22429
      Dave Sabatelli
      Participant

      Just sent to Apple feedback  “I have IPF and knowing my blood oxygen level is very important me.Is this a feature Apple is considering for the Apple watch?”
      Thanks

      dave

       

      • This reply was modified 10 months, 3 weeks ago by Mark Koziol.
      • This reply was modified 10 months, 3 weeks ago by Charlene Marshall. Reason: formatting
    • #22433
      Mark Koziol
      Keymaster

      Hello Dave, I have done a little research and can not find any valid text stating the Apple Watch would also act as a pulse oximeter. I would hope that technology could soon be available. Until then I will carry my pulse oximeter where ever I go. Take care, Mark.

    • #22447
      Rod Danner
      Participant

      I thought I would give an update on my experience with the Apple Watch 5 that was under the tree on Christmas. I have been exploring the use and potential over the last two weeks. I have found it to be extremely useful in any number of ways both health and related to life in general. It works relatively seamlessly with my iPhone, although, it sometimes takes some fiddling and tweaking to get the result you want.

      The watch replaced my Fitbit, of which, I was quite fond. Many of the features of the Fitbit are mirrored with the watch, but the endpoint data is much more thorough. I find that the reminders to breathe and to stand are a good way to keep you from sitting for too long. Closing the activity rings gives you a daily challenge. You can adjust the “Move” goal for a different calorie burn threshold, but that is the only one you can tweak. Although I try to exercise daily, I find that I often do not close the “Exercise” ring. It often gives me little to no credit for a two-mile walk. It is pulse rated and I find that if I walk fast enough to elevate the pulse to the required level, my wife can’t keep up. That said, it does give you a complete readout of time, distance, heart rate, calorie burn, pace etc even if it doesn’t close the ring. I have tried using “Map my Walk” with the workout app, but it gives you double readings in the “Health” app.

      Many of the apps I had on my phone exported to the watch which was quite surprising and convenient. I have added a couple of iPhone/Watch 5 apps which I find excellent if you’re kind of obsessive about monitoring health data. The first is called “Heartwatch”, which coupled with the heart measurement capabilities gives you all kinds of data, including time in elevated heart rate zones (warmup, fat burn, fitness, etc) which was missing from the “workout” app. There is a companion app called “Autosleep” that monitors lots of information about your sleep patterns. Both of these are much more thorough than the data from my Fitbit. The apps are $2.99 each in the App Store and will work with only the series 4&5.

      I am extremely pleased with my watch and am finding it increasingly useful every day. I have the GPS only, no cellular. I consider it to be a good investment in monitoring my health.

      My apologies for this being so long.

    • #22448
      Pam Steele
      Participant

      My new I watch just arrived.  Charging it now.  So do I find the breathe app on the watch or the phone.  Very excited about it.

    • #22453
      Rod Danner
      Participant

      The Breathe app is native. It will already be on your watch.

    • #22484

      @pamsteele

      Hi Pam,

      Thanks so much for writing, I’m glad you got the watch. It’s been a few days since your post – do you like it so far? The Breathe App as Rod mentioned is built into the device and should be on unless you opt to turn it off. It is easy to glance down at the ‘reminder’ to breathe notification that comes up and ignore it, but I am challenging myself to avoid doing this and trying to follow the instructions on deep breathing twice daily. Let me know what you think of it so far!
      Charlene.

       

       

    • #22485

      @rod-danner

      Hi Rod,

      Many thanks for writing and providing us with your thoughts/experiences of the Apple Watch. I second much of what you’re saying in terms of how great and effective it is!

      With regards to the activity rings, I like this but yes unless I walk at a certain pace (hard to do right now, as I recover from this illness) it doesn’t capture it as any type of physical activity. I do like knowing the calories burned though, and the steps/distance walked. The exercise ring gives me a challenge to close every day, but like you I haven’t been able to always complete it. I wonder if there is another step-tracker/exercise App you could add to the watch that might capture more of the data you’re looking for? I need to explore other helpful apps that can be added to the watch as I know I’m not using it to its full capabilities. I use the AutoSleep app too! One I’d like to find and put on my watch is to help with my water intake – tracking how much, reminders to drink etc. I do not drink near the amount of water as I probably should.

      Thanks for the review of the watch, I’m glad you’re liking it!
      Take care, Charlene.

      • This reply was modified 10 months, 2 weeks ago by Charlene Marshall. Reason: tagging
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