KenM
Active member
- Joined
- Jun 21, 2019
- Messages
- 64
- Reason
- PALS
- Diagnosis
- 03/2018
- Country
- US
- State
- NC
- City
- Charlotte
A question about how others measure how they are doing, with special reference to our cell phones as a tool.
Ever since I was diagnosed, I have been trying to measure how I'm doing with a variety of different metrics (besides the ALSFRS and the doctor's clinical tests of muscle strength, vital capacity, etc). I use performance on the bike machine at the gym, and weights I can comfortably lift; I am a participant in a PMP test in which motion sensors on my arms and legs measure velocity as a proxy for arm and leg strength; and I keep track, loosely, of how far I walk each day and how long it takes.
I learned from my son today that my smart phone's "health" app has been monitoring how far I walk and how many steps I've taken every day, for years, and that that data is easily retrievable from my cell phone! I feel like an idiot for not knowing this, but I'm not one to spend lots of time figuring out all the apps on phones.
The data aren't precise, in that it only counts steps taken when you have the phone on your body (or maybe in a backpack or purse? I don't know). So it definitely undercounts total mileage and steps each day. But I share this because this data is so easy to collect, just by keeping a cellphone in our pocket each day, and could be of real utility to our physicians and interdisciplinary teams. I'm a bit shocked no one recommended that I start using the phone more systematically (ie keeping it in my pocket all day) to capture that information more accurately.
Looking through the data collected, I learned that I have been walking a lot more on average each day than I realized - sometimes up to 3 miles, maybe more than I should (I get tired after walking more than a mile without a break now, especially when going uphill). Even on slow days (or days when the phone was left on a desk most of the day), I'm walking at least a half a mile.
I also did some quick calculations using sample dates from 2017 (before I was diagnosed, but when symptoms first appeared) through to today, to see if I was needing to take more steps to walk a certain distance. I expected to see a clear pattern of a shorter gait. But the data didn't show that. My stride still covers roughly the same amount (about 1.9 feet per step) as it did two years ago. I'm just walking slower, not shorter, and getting tired faster than before.
Has anyone else been using their cell phone app to monitor their walking distance? If so, has it been useful to you? Is this something we should bring to the attention of ALS physicians and interdisciplinary teams as a potentially valuable metric?
I'm also curious if PALS have other informal metrics they use to monitor how they're doing with legs, arms, breathing strength....the ALSFRS is fine as far as it goes, but it hardly captures the nuances of disease progression.
I look forward to hearing your thoughts.
Ken
Ever since I was diagnosed, I have been trying to measure how I'm doing with a variety of different metrics (besides the ALSFRS and the doctor's clinical tests of muscle strength, vital capacity, etc). I use performance on the bike machine at the gym, and weights I can comfortably lift; I am a participant in a PMP test in which motion sensors on my arms and legs measure velocity as a proxy for arm and leg strength; and I keep track, loosely, of how far I walk each day and how long it takes.
I learned from my son today that my smart phone's "health" app has been monitoring how far I walk and how many steps I've taken every day, for years, and that that data is easily retrievable from my cell phone! I feel like an idiot for not knowing this, but I'm not one to spend lots of time figuring out all the apps on phones.
The data aren't precise, in that it only counts steps taken when you have the phone on your body (or maybe in a backpack or purse? I don't know). So it definitely undercounts total mileage and steps each day. But I share this because this data is so easy to collect, just by keeping a cellphone in our pocket each day, and could be of real utility to our physicians and interdisciplinary teams. I'm a bit shocked no one recommended that I start using the phone more systematically (ie keeping it in my pocket all day) to capture that information more accurately.
Looking through the data collected, I learned that I have been walking a lot more on average each day than I realized - sometimes up to 3 miles, maybe more than I should (I get tired after walking more than a mile without a break now, especially when going uphill). Even on slow days (or days when the phone was left on a desk most of the day), I'm walking at least a half a mile.
I also did some quick calculations using sample dates from 2017 (before I was diagnosed, but when symptoms first appeared) through to today, to see if I was needing to take more steps to walk a certain distance. I expected to see a clear pattern of a shorter gait. But the data didn't show that. My stride still covers roughly the same amount (about 1.9 feet per step) as it did two years ago. I'm just walking slower, not shorter, and getting tired faster than before.
Has anyone else been using their cell phone app to monitor their walking distance? If so, has it been useful to you? Is this something we should bring to the attention of ALS physicians and interdisciplinary teams as a potentially valuable metric?
I'm also curious if PALS have other informal metrics they use to monitor how they're doing with legs, arms, breathing strength....the ALSFRS is fine as far as it goes, but it hardly captures the nuances of disease progression.
I look forward to hearing your thoughts.
Ken