metrics

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KenM

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Joined
Jun 21, 2019
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64
Reason
PALS
Diagnosis
03/2018
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US
State
NC
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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
 
I have an apple watch and do check with that. My phone was useless because I so often did not carry it. I check strps and distance which I believe it overestimates ( I used to have a fitbit which I think underestimated). I did calibrate as instructed

I also find outdoor walk helpful for speed estimate and it works indoors if you are walking a fairly long way ( not across the room).

Dr James Berry of Mass General talked about getting data from phones to track things. One thing he commented onwas location tracking. As we progress we go out less and travel shorter distances even if you are at a stage where you use a chair but there were lots of other things. His point was televisits are becoming more of an option and the more remote measures they can validate the better. Televisits are clearly easier for PALS. They are also cheaper on average for both sides ( It turns out mgh loses money on clinic visits)

There are at least a couple of studies looking at tracking various things through phone or fitbit.

I am in a study that has given me a breathing monitor to track that. It isn’t svc but another similar measure

I also have for my own information a grip strength tester
 
Thanks Nikki, the apple watch is something my son and I talked about. As you note it's going to give more accurate readouts because its almost always on us, unlike the cell phone. For those who don't want to pay for that phone, the free data from the the cell phone isn't a bad option.
Good to hear some clinics are thinking about dual usage of our cell phones.
 
The reason I got the watch is to have the phone always on me in case I fall. We need to have something with us and I just wasn’t good about the phone. Btw I was told at mgh patients who have the newest watch with fall detection reported it wasn’t consistently detecting falls
 
I monitor my own breathing. I had to buy two pieces of equipment and they weren't cheap. One measures FVC, SVC, MVV (which I think is very important) and quite a few other things. The other measures MIP, MEP, and SNIP. I bought them in December 2016, I believe. My RT who visits said they are more accurate than the equipment he uses. He is overweight and on CPAP and likes to test himself when he visits. The mouthpieces are disposable and it is always calibrated. I should use the computer program that came with them but they both have a good LED screen. You enter your age, height, gender, and weight. The normal values were less than Mayo's values but Mayo's values, Johns Hopkins' values, and University of Florida's values were all different so I'm tracking relative decrease in function. There is also a learning curve to doing better on breathing tests. I get an ABG done at least once a year at Advent Care Hospital. It's just a short drive and it never hurts. My doctor writes an Rx to give me the results. After the test I wait about 15 minutes and the PA comes out with a printout of my results. So far, so good on the ABG.

As far as walking, I was a runner and have always kept track of my mileage. I went by measuring my running routes, then knowing how far I ran/walked each day. My legs seem to be the first thing to take a huge hit so now I don't walk outside. I walk around the condo a lot and, when my pain level permits, I walk 1/2 mile on the treadmill in our gym at a 3mph pace, so that's 10 minutes. Last year I was doing the more distance, a bit more time at 3.2mph with a 5 incline. I can't do anything to get my heart rate up. I go in the outdoor pool and, again depending on my pain level and energy level, straddle a noodle and do the breast stroke for ROM in my arms. I can go anywhere from 15 minutes to 45 minutes in the pool. Last year I could easily go an hour with no pain. This year I lost some muscle mass in my shoulders so I'm paddling slower and for a shorter duration.

I also monitor my grip strength. I played a lot of golf and did grip exercises regularly before diagnosis so I already had the grip strength trainer. Now I just use it to monitor my grip strength. Since 2015 I've only lost about 10% in my right hand but 20% in my left. During that time both went from strong to normal. My left hand has lost a lot of fine motor skills. I take timed typing tests on the computer and have lost a lot there. I drop things a lot
 
I respect you guys for tracking your function quantitatively. I tend to take a more qualitative approach, looking at the big picture. For example, a year ago, I was able to take care of myself at home when my partner went out of town for a week. I could still drive, cook, eat, and do a light workout at the gym. One year later, I can no longer drive, have very limited walking inside with a rollator and otherwise need a pwc. I can no longer go to the gym. I now have a feeding tube and can only eat smoothies by mouth. I need help bathing, dressing, and feeding, and I would need to hire help if my partner were to go out of town. My clinic follows my PFTs every 3 months, and the PT and OT check my strength including grip and pinch.

I think metrics are great if they inform your disease management and certainly great as a research tool. I personally can’t think of how that level of detail would help me.
 
Karen, I think you're right that the quantitative metrics are mostly useful for research, and that measuring functionality in general as you do is the most important yardstick for us individually. For whatever reason I like to track how I'm doing as closely as I can, and so like to have close measurements when they are easy to do.
Kim, you mentioned light swimming, and I have to say that was an epiphany for me last week. Ever since the diagnosis I'd been afraid to swim for fear that leg weakness would make me feel panicky. But last week I went in a pool with my kid and discovered that walking in the pool was great exercise and felt great, as I was not having to fight for balance -- the water was a stabilizer.
 
I monitor the time it takes to walk up my street. At one time I had plans to correlate it to the supplements I take (i.e. which ones are effective), but that hasn't panned out. Mostly I just add supplements to my list and I am afraid to drop any. Here is my data from Aug 2016 to March 2019. Keep in mind that I have PLS not ALS, so my progression is slow. I have often thought that more quantitative data, not just ALSFRS, should be used in trials.


17376
 
There is an application for iPhone and Android called 'ALS Mobile Analyzer which can track/test various functions including speech, fine motor skills, finger movement, breathing arm lift, and mobility. It was developed under the auspices of the Prize4Life group. While Prize4Life closed their US operation last fall, the Isreali group continues operation. The app is still available in the App Store and was updated at the first of the year. Here is a link to their web page: ALS Mobile Analyzer – Prize4Life
 
Ken,
We also have an indoor pool that is heated to 85 year round. One of my friends who lives here is a yoga instructor. We have many senior citizens in our condo, some with limited mobility. My friend does a water yoga class in the indoor pool followed by 30 minutes of walking in the pool. Some residents only come for one or the other but it's designed to be gentle. She does it for free and has quite a following.

I spent about an hour at the outdoor pool today. Mostly talking while gently walking, then about 30 minutes on my noodle doing my ROM exercises. When I'm in the water I'm nearly pain free.
 
Thanks for the advice on the ALS Mobile Analyzer. I uploaded the app and read through the conditions, and the app gives Prize4Life the ability to monitor a great deal of information from the phone, more than I was comfortable with. I suggest everyone read through that to make sure you're ok with the data you're sharing with the company.
 
I just want to comment on the Apple watch. For anyone considering it, the newer ones have fall detection. it detects your fall and will give you time to either tell it youre ok, or call emergency services. if you don't respond, it will call emergency services and tell them your GPS location to send them to you in the event you've lost consciousness. Most fall detection devices have a monthly service charge that is often really pricey. With apple watch you only pay for the watch, there is no additional subscription cost. It's both a nicer more versatile product, and much more affordable given the one time purchase, instead of monthly subscription. Since I spend part of my day alone and have had a number of falls, we bought the Apple watch for me for soley this reason for the fall detection. As icing on the cake I can also use it to make phone calls when my cell is out of reach and use some of the apps.
 
As I noted above I was told at mgh their patients are reporting inconsistent results with fall recognition- sometimes it works. Sometimes it does not. But having the phone capability which includes calling 911 by just holding a button down for five seconds if you can’t speak is major. And apparently fall detection works for some people some of the time
 
Oh sorry Nikki I didnt realize you already mentioned the fall detection. I also didn't realize it had inconsistent results. That's concerning; ive been relying on the idea that it would work in an emergency.
 
I was disappointed to hear it also. I have the previous watch with the cellular phone. I was considering upgrading.
 
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