On April 25, our daughter, Gabrielle, was rushed to the hospital by ambulance after having a breathing episode. Gabrielle (Gabby) has a condition which unfortunately causes her to have many such episodes, however, this time was different as she had a seizure and lost consciousness, twice. To say that the weeks since have been a nightmare would be a huge understatement.
in addition to all the emotional stuff, the sheer volume of incoming information soon became overwhelming. Multiple doctors conducting multiple tests, prescribing multiple medications, making multiple changes to her diet, proposing multiple theories as to what might be going on with her. Our focus needed to be on Gabby and on the situation and yet we also needed to do our best to stay on top of the ever-growing pile of information if we were to have any hope of making informed decisions in reference to her care. How to manage it all?
Information was coming in all sorts of formats. “Call me with any questions,” said many of the doctors while handing me their printed cards. “Here’s a bunch of articles I’ve printed out for you to read,” said others. My own frantic research attempts were turning up links and information at a staggering rate. And of course there were the actual meetings with her medical team that required me to write stuff down very quickly and without much time to prepare. I have a plethora of scanning and note-taking apps, but I really needed everything centralized in one place. not only that, but I needed to make sure my wife and I could share information back and forth without giving any thought to the actual logistics of making that happen.
I’ve been a huge OneNote fan ever since learning of the Microsoft Accessibility team’s efforts to make it accessible. I use OneNote primarily for work, but also use it to keep track of various things going on in my personal life. Still, I’ve always had the luxury of knowing that if OneNote failed me, I could use a backup option and while it might be less convenient, I could certainly make due. Within hours, I no longer felt like I had that luxury: I needed a system that would work for more than just me. I needed a system that would be dependable. I needed a system that would allow me to use my phone, my computer, or Anything my wife, Jenn might have access to from the hospital. OneNote met all those requirements, but accessibility of OneNote is relatively new, should I really trust it for something like this?
Dealing with all the print.
Microsoft makes a product called Office Lens which allows a photo to be taken of a printed page. The text in that photo can then be recognized using optical character recognition and the results read aloud. One of the really awesome things about Office Lens, at least on iOS is that I get spoken feedback when positioning the camera. I can also send the original image, along with the recognized text version to OneNote. Whenever given something in print, whether a sheet of paper or business card, I tried to immediately capture it using Office Lens. Being wired on caffeine and Adrenalin, I’m amazed i was able to hold my phone’s camera steady enough to capture anything, but Office Lens talked me through the positioning and for the most part, it worked great. Certainly I didn’t get 100% accuracy, but I got names and numbers and enough text to get the gist. Microsoft also makes a version of Office Lens for Windows 10 which I was very excited about until I realized it wouldn’t let me use my flatbed scanner, apparently, like the mobile versions, it’s really designed to use a camera. I found a work-around by scanning pages using an alternative app and importing the images into Office Lens, but maybe someone out there knows of a better way? During this past CSUN, Microsoft demonstrated the ability to scan a document using their Surface Pro, I may need to add this thing to my Christmas list if it really works.
Quickly writing stuff down.
i don’t know how many times I’ve heard the saying “there’s never a pen around when you need one,” but it’s true. No matter how prepared I think I am to write something down, it almost never fails that someone has information for me when I’m in the most inconvenient place to receive it. One great aspect of OneNote is that there are numerous ways to quickly take down information. On iOS, there’s a OneNote widget that allows me quick access from any screen. I can pull down the notification center, swipe right and my OneNote widget is the first widget on my list. I simply select the type of note I wish to write, text, photo, or list, and get a blank page for writing. I have the option of titling my page although if I’m in a hurry, I’ve found it easier to just write whatever it is down and title the page later. If I’m not in a position to type, or if there’s simply too much information, OneNote gives me the option to attach a voice recording to a note.
If I’m at my computer, I have a really great option for taking a quick note: The OneNote desktop app which is bundled as part of office has a feature called, Quick Note. From anywhere, I simply press windows+n and I’m placed in the title of a new blank page. I can write a title or title it later, most important, I’m at a place where I can just start writing. When I close the window, my note is saved and I’m returned to wherever I was when I hit windows+n. This makes it possible for me to take down a note literally at a moment’s notice, i don’t even have to cycle through open windows which is great since I generally have a ton of those open at any given time. My only gripe is that OneNote stores these quick notes in their own notebook and I have to move them to the correct place later. I’m hopeful there’s a setting somewhere which will allow me to configure this behavior, but if not, I consider it a very small price to pay for an ultra-convenient way to take a quick note.
Managing Gabby's home care.
While Gabby still has a long medical journey ahead, she is stable and is able to be home with medication, monitors and other supports in place. Coordinating which medications she needs to take and when, in addition tracking other aspects of her condition is again something we’re managing to accomplish with OneNote. First, we created a to-do list of all her medications to use as a sort of template. We then copied this list renaming each copy to a corresponding date. In this way, we can keep track, day-to-day, of which medications have been taken and which remain; no back-and-forth between Jenn and me around whether Gabby has taken a specific medication or not. There are a few drawbacks to this system, most notably that if any of her medications change, we’ll need to delete and re-create all the future pages in her journal section. There are certainly other to-do apps that could help us more easily manage recurring to-dos like this, but by using OneNote, we’re able to keep all her information centralized and synchronized. In addition, using OneNote makes it easy for us to track events such as breathing episodes and other real-time observations which we could not properly capture in a to-do app. As we continue to work toward figuring out the best next step for Gabby, we have a central place to compile research. Also, as medical bills and insurance claim determinations start arriving by mail (amazing how fast that happens) we have a way to organize that as well.
Problems and challenges.
I don’t regret my decision to use OneNote to help me manage these past few weeks, not even a little. That said, I have encountered some challenges and feel they’re worth mentioning. To be fair, i see that OneNote for iOS actually has an update today, so some of these may no longer exist.
On the iOS app, when using a Bluetooth keyboard, editing text doesn’t seem to work as expected. Specifically, when i arrow around, sometimes I find myself on a different line, sometimes on a different word, commands to move word by word don’t seem to work as I think they should. My stopgap solution has been to simply not edit on iOS; I hit the asterisk ‘*’ key a few times to mark that there’s a problem, hit enter and just keep on typing.. While editing would be great on iOS, and maybe it’s just me who’s doing something wrong, my primary interest is in capturing the information knowing that I can always clean it up and edit it later on my PC. When using Braille Screen input, my preferred method of typing on iOS, i sometimes need to double tap the text area even though the keyboard is visible. I’m not sure why this is the case, but it’s an easy fix to a strange problem.
On the PC side, working with the Windows 10 OneNote application is far easier than working with the OneNote Desktop application provided as part of Office. That said, the Quick Note functionality is only available in the Office version, not the Windows 10 app version. For the most part this doesn’t cause any problems, it’s just a little confusing as if you want to use Quick Notes, you have to make sure the Office version of OneNote is installed even if, like me, you don’t use it for anything else.
My other frustration with the Quick Notes functionality of the Office app, as mentioned above, is that i can’t seem to change where it wants to actually put my quick notes. I want them in the cloud, within a specific notebook, and Office wants them on my local machine, in a different notebook. Fortunately it’s very easy to move notes from one place to another, it’s just one more thing I need to remember to do and if I forget, those notes won’t be synchronized to my phone and to Jenn.
Currently, in the Windows 10 OneNote app, I cannot figure out how to check items off the to-do lists. I can read the lists just fine, but can’t tell what’s checked and what isn’t. My solution for this is to simply use iOS for now when checking off Gabby’s medication.
Office Lens has got to be one of the coolest apps ever, especially on iOS where it provides fantastic guidance for positioning the camera. On Windows, Office Lens seems very accessible although I haven’t figured out how to make it work with my flatbed scanner. I don’t know if there’s a way to fix this, or if I need to find another way to import scanned images into the windows 10 OneNote app, such that text within the image is recognized.
Throughout my life I’ve done many things to prepare for all sorts of emergencies, starting as far back as fire drills in elementary school, but I’ve never given a great deal of thought to what for now I’ll call, informational preparedness. The following are a few questions you may wish to consider as, having the answers now when they’re not needed, is much better than not having them later, when they might be.
- If I were in a situation where I needed to write something down, right now, how would I do it?
- Am I dependent on one device? Put another way, if I drop my phone or laptop and it smashes, what does that mean for the information that's important to me?
- Do i have the contact numbers for friends, family, doctors, transportation services, friends and any others I might need and can i access them quickly? Do I have these on more than one device and do I know how to access them wherever they are?
- Do I have a way to share information with someone else in a way that makes sense to me and them? Who might that someone else be and have we discussed this specifically?
- How do i handle materials in an inaccessible format to me in an urgent situation? it might be fine for my neighbor to help me read my mail, but they may not be available to me all day, every day.
- Does my doctor/pharmacy/healthcare provider have a way to send me information in a more accessible format? Many places are using online systems similar to MyChart, but getting that set up when it's actually needed it is not fun -- it's really not.
I’m sure there are many other questions that should be asked, but the above list should be a good starting point. Certainly let’s keep the conversation going and if there are others, put them in the comments and I can add them to the list.
Finally, I want to thank the OneNote team and countless others who have been working to make technology accessible. Technology is truly an equalizer in ways that, even as a member of the accessibility field, continue to amaze me and I couldn’t be more appreciative.