I had my stroke in mid-January 2025 and I have my stroke when I was 58 years old. I turned 59 in May. I had no risk factors for stroke. It was just really out of the blue and I have a Google watch that my husband gave me for my birthday and I try to use it to track my steps. But I think my gate is so off that it doesn't pick up my steps so I can walk around the house, go up and down the stairs several times and my watch will show that I've done zero steps basically. And I've tried to fiddle with the settings in the Fitbit app which connects to the Google watch, but I haven't found a way to get it to actually accurately track my steps. I wonder if anyone else has had experience with this and how they deal with it
Thanks RJ for adding your experience with the Fitbit. I’m not familiar with those gait settings so hopefully someone here will see and comment.
I know it is an issue overall, the algorithms are set for ‘normal’ gait cycles and this is in part why @Rory Polera and I did this interview together to call out digital health tech/ wearable vendors to work with survivors to make their products learn from our survivor community.
Related: I use the Apple watch and recently took part in a study out of the University of Vermont that measured mobility after in stroke in the community. I hope to hear more soon and will keep you posted. The investigator told me this was the first study to use the Apple watch with stroke😞 Lots of work to do!
My gait was certainly impacted the first few weeks after the stroke. Once I got off the walker (within a month) and moved to trekking poles, it took quite a while to see the gait narrow and improve. It took me a couple more months to drop the trekking poles and slowly introduce inclined/uneven surfaces.
More walking has certainly helped, and over longer distances. 1 block, multiple blocks, 1 mile (with or without trekking poles). It took 1-2 solid years until I started to feel better on my feet with a much more natural feeling gait. Having a baby and using the stroller certainly helped too.
That’s an interesting point about gait and its affect on wearable accuracy. I never knew how accurate the watch/wearable was with picking up on steps, especially with an altered gait. I’m participating in the UVM study next week, and will have a better gauge on my apple watch accuracy, and will gladly share once I know more.
Thanks Rory for adding your insights here as well. You got me thinking deeper about what I did as well over the first few years in my recovery. I had this built in metronome in my head that I would hear say 'step, step, don't fall' constantly when I was trying to restore my gait. What worked for me was building a home gait harness system to go over my treadmill so I could walk faster without fear of falling (and to music to get that metronome out of my head!) and eventually started running.
My early recovery days were before the Apple Watch. But I did use a Nike Fuelband that I would wear on my ankle vs my wrist to gauge steps. It worked well especially. when I put it on my L (impaired) side I could see differences in steps captured vs when I wore it on my right (good side). This trick I later used with stroke patients in my clinic to gauge and awareness (for both patient and PT) of how much the impaired limb was moving while at home and then we built challenging goals from that starting point. Similar to what @RJ Sanders mentioned with her Fitbit, it still isn't perfect but depending on where and how the wearable is worn it still can offer meaningful data to support recovery. Even better, as you know and mentioned in your industry CTA during your update would be if the device vendors would work with us to make it fit for stroke!
Very interesting video, thanks! I also benefited from using technology in my recovery, but a completely separate set of technologies for what Rory used. I had severe aphasia and apraxia, so I heavily used therapy apps to help with my speech, spelling & writing. And I continue to benefit from using technology, such as speech-to-text.
I'm hesitant to use some of the technologies that Rory used, for a few reasons. I think it's easy to get obsessive about the data generated by these technologies. This can be helpful, as it apparently for Rory, but I don't think it would be good for me. Before my stroke I used a smart watch to track my exercise. Yes, it drove me to exercise faster or further, but I actually found that I enjoyed the exercise less, because I was competing with myself. I have a new smart watch now, but I don't use it to track my exercise or anything else. It's just so that I can easily contact my wife in an emergency.
I'm also not sure which of those technologies, like sleep trackers and mood measures, have been validated by scientific studies. The few that I have tried were not impressive, although that was a few years ago.
By the way, although data doesn't lie (in the sense of being deliberately deceptive), it can certainly be inaccurate or biased, in all sorts of ways. It's important to be aware of these possibilities, and sometimes be skeptical of the data that one encounters.
Thank you Mark for adding your valuable insights to this discussion. Your comments are the start of exactly why Rory and I have started this project and we need survivor and care partner input!
We are just getting started with unpacking all the takeaways from Rory sharing his story. In fact Rory just joined us over here on Substack @rorypolera so I will be sure to call this to his attention.
You bring up so many great points including, how these tech tools made you 'feel', as well as the validation of these technologies and where they fall in the market, digital health technologies/FDA regulated devices vs consumer wearables and where is the line. (Case in point WHOOP getting a wrist slap earlier this week by the FDA about their marketing of their blood pressure readings from a wrist worn band. ).
Personally, I wouldn't be where I am in my own recovery or have piece of mind in my long term health surveillance without having the digital tools I've adopted to help me.
Will be diving deeper and breaking down each takeaway in Rory's feature story over the coming weeks, so thanks for getting us started and look forward to more comments from you!
By the way, still want to get you on a live event to tell your story how you are using tech to help with your aphasia.
I had my stroke in mid-January 2025 and I have my stroke when I was 58 years old. I turned 59 in May. I had no risk factors for stroke. It was just really out of the blue and I have a Google watch that my husband gave me for my birthday and I try to use it to track my steps. But I think my gate is so off that it doesn't pick up my steps so I can walk around the house, go up and down the stairs several times and my watch will show that I've done zero steps basically. And I've tried to fiddle with the settings in the Fitbit app which connects to the Google watch, but I haven't found a way to get it to actually accurately track my steps. I wonder if anyone else has had experience with this and how they deal with it
Thanks RJ for adding your experience with the Fitbit. I’m not familiar with those gait settings so hopefully someone here will see and comment.
I know it is an issue overall, the algorithms are set for ‘normal’ gait cycles and this is in part why @Rory Polera and I did this interview together to call out digital health tech/ wearable vendors to work with survivors to make their products learn from our survivor community.
Related: I use the Apple watch and recently took part in a study out of the University of Vermont that measured mobility after in stroke in the community. I hope to hear more soon and will keep you posted. The investigator told me this was the first study to use the Apple watch with stroke😞 Lots of work to do!
My gait was certainly impacted the first few weeks after the stroke. Once I got off the walker (within a month) and moved to trekking poles, it took quite a while to see the gait narrow and improve. It took me a couple more months to drop the trekking poles and slowly introduce inclined/uneven surfaces.
More walking has certainly helped, and over longer distances. 1 block, multiple blocks, 1 mile (with or without trekking poles). It took 1-2 solid years until I started to feel better on my feet with a much more natural feeling gait. Having a baby and using the stroller certainly helped too.
That’s an interesting point about gait and its affect on wearable accuracy. I never knew how accurate the watch/wearable was with picking up on steps, especially with an altered gait. I’m participating in the UVM study next week, and will have a better gauge on my apple watch accuracy, and will gladly share once I know more.
Thanks Rory for adding your insights here as well. You got me thinking deeper about what I did as well over the first few years in my recovery. I had this built in metronome in my head that I would hear say 'step, step, don't fall' constantly when I was trying to restore my gait. What worked for me was building a home gait harness system to go over my treadmill so I could walk faster without fear of falling (and to music to get that metronome out of my head!) and eventually started running.
My early recovery days were before the Apple Watch. But I did use a Nike Fuelband that I would wear on my ankle vs my wrist to gauge steps. It worked well especially. when I put it on my L (impaired) side I could see differences in steps captured vs when I wore it on my right (good side). This trick I later used with stroke patients in my clinic to gauge and awareness (for both patient and PT) of how much the impaired limb was moving while at home and then we built challenging goals from that starting point. Similar to what @RJ Sanders mentioned with her Fitbit, it still isn't perfect but depending on where and how the wearable is worn it still can offer meaningful data to support recovery. Even better, as you know and mentioned in your industry CTA during your update would be if the device vendors would work with us to make it fit for stroke!
Hi David,
Very interesting video, thanks! I also benefited from using technology in my recovery, but a completely separate set of technologies for what Rory used. I had severe aphasia and apraxia, so I heavily used therapy apps to help with my speech, spelling & writing. And I continue to benefit from using technology, such as speech-to-text.
I'm hesitant to use some of the technologies that Rory used, for a few reasons. I think it's easy to get obsessive about the data generated by these technologies. This can be helpful, as it apparently for Rory, but I don't think it would be good for me. Before my stroke I used a smart watch to track my exercise. Yes, it drove me to exercise faster or further, but I actually found that I enjoyed the exercise less, because I was competing with myself. I have a new smart watch now, but I don't use it to track my exercise or anything else. It's just so that I can easily contact my wife in an emergency.
I'm also not sure which of those technologies, like sleep trackers and mood measures, have been validated by scientific studies. The few that I have tried were not impressive, although that was a few years ago.
By the way, although data doesn't lie (in the sense of being deliberately deceptive), it can certainly be inaccurate or biased, in all sorts of ways. It's important to be aware of these possibilities, and sometimes be skeptical of the data that one encounters.
Regards,
Mark
Thank you Mark for adding your valuable insights to this discussion. Your comments are the start of exactly why Rory and I have started this project and we need survivor and care partner input!
We are just getting started with unpacking all the takeaways from Rory sharing his story. In fact Rory just joined us over here on Substack @rorypolera so I will be sure to call this to his attention.
You bring up so many great points including, how these tech tools made you 'feel', as well as the validation of these technologies and where they fall in the market, digital health technologies/FDA regulated devices vs consumer wearables and where is the line. (Case in point WHOOP getting a wrist slap earlier this week by the FDA about their marketing of their blood pressure readings from a wrist worn band. ).
Personally, I wouldn't be where I am in my own recovery or have piece of mind in my long term health surveillance without having the digital tools I've adopted to help me.
Will be diving deeper and breaking down each takeaway in Rory's feature story over the coming weeks, so thanks for getting us started and look forward to more comments from you!
By the way, still want to get you on a live event to tell your story how you are using tech to help with your aphasia.
>> By the way, still want to get you on a live event to tell your story how you are using tech to help with your aphasia.
David,
I would be very interested in doing that! You can contact me at markbrodie@gmail.com .
Regards,
Mark
Let’s plan for it Mark! Just sent you email to schedule
We did just this! Mark joined me this past Saturday for a fantastic Substack Live event! Catch the replay here! https://open.substack.com/pub/knowstroke/p/finding-your-voice-a-conversation