Veronica With Four Eyes

Choosing New Devices With Chiari Malformation

One of the main reasons that I am skeptical to try new devices or devices made by brands I’m not familiar with is because my brain condition can have a tremendous impact on how well I am able to use the device, or if I can use it at all. As a user with Chiari Malformation, I have had quite a few device “fails” over the years, from accidentally buying a phone with a strobing animation to falling on the floor shortly after putting on a VR headset due to the weight on my head. However, I’ve also had quite a few device “wins”, such as my phone that I can use with one hand or my computer that I can type on for long periods of time. In honor of Chiari Malformation Awareness Month, here are my tips for choosing new devices and electronics as a user with Chiari Malformation or similar conditions.

First, what is Chiari Malformation?

Chiari Malformation is a neurological condition that means that a person has “too much brain to contain.” In medical terms, Chiari Malformation occurs when brain tissue expands into the spinal canal, due to a smaller skull. Functions controlled by the occipital lobe of the brain are affected, such as vision and balance, and many Chiari patients also have conditions such as chronic migraine, photosensitivity, and similar. Chiari can be congenital, however, in some cases, symptoms can develop later in life and may not show on an MRI. Chiari Malformation affects at least 1 in 1,000 people, though symptoms vary from person to person.

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Make sure portable electronics can fit in one hand

One of the major things I consider when buying a phone or small handheld electronic device with Chiari Malformation is if the device can fit in my hand and/or if I can lift it up with one hand. Chiari Malformation can cause hand weakness and strength issues, and supporting devices with both hands can get tiring after a while, though I don’t mind using two hands for short tasks such as sending a text message. Users may also benefit from using portable stands such as PopSockets, which can make devices easier to hold or display for longer periods of time- I have a PopSocket on the back of my iPod Touch as well as my eReader, and it helps for holding it close to my face when reading the display.

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See if the device has multiple input methods

Chiari symptoms can fluctuate over the years, or even over the course of a day. For this reason, it is helpful to have devices that contain multiple methods for inputting text or information, and to know how to access these alternative inputs as needed. Some examples from my favorite electronic devices include:

  • Having the option to use dictation instead of typing on my phone, tablet, computer, etc
  • Using voice control/voice assistants to open apps and perform tasks without having to look at a screen
  • Creating a gesture-based interface that decreases the amount of repetitive movements needed to access a homescreen or send messages
  • Using a stylus on touch screens
  • Typing requests for voice assistants when speaking is difficult
  • Connecting external devices/accessories- more on that later

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Adjust displays for photosensitivity, including flashing lights

Many people with Chiari Malformation report being sensitive to bright and/or flashing lights, which is known as photosensitivity or photophobia. I wear tinted glasses to help with my photosensitivity to bright lights, though I’ve also had great success with configuring my devices so that they have a screen tint that is easier to work with and doesn’t strain my eyes as quickly. For people sensitive to strobe/flashing lights in addition to bright lights, I have an entire post dedicated to using accessibility settings to help with photosensitivity on social media linked below.

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Don’t forget about accessibility settings

The accessibility settings menu features lots of different customization and ease of access settings that can help users with Chiari Malformation and other conditions with making their device easier or more efficient to use. This can include making text larger, enabling on-demand screen reading tools, optimizing devices for use with one hand, making displays larger/simpler to use, increasing color contrast, and so much more. I highly recommend checking out the accessibility settings menu to learn more about what settings are available on each device, or talking to someone using an accessibility support phone number to learn from a trained specialist on what is available.

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Think about how the device will be stored/carried

When I interned at a major technology company, I had trouble carrying my 15-inch laptop by myself because it was too heavy for me to hold onto, and I had trouble carrying it while I used a blindness cane or human guide. For this reason, I either carried it in a backpack wherever I went or would ask my mentor to carry it for me if I didn’t have my backpack. This experience not only reiterated the importance of me having a device that I can pick up easily, but it also encouraged me to think about how I would be storing or transporting my devices so that I don’t have to worry about straining my muscles or having to ask someone for help. Some examples of storage solutions I’ve used include:

  • Storing my tablet and phone in an easy-to-reach bedside caddy when I lived in a dorm
  • Keeping my laptop in a backpack with two padded straps
  • Using a rolling backpack for carrying multiple items
  • Having clothing with pockets that can store small devices without them falling out
  • For short distances, using a small crossbody bag for portable devices

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Add additional accessories as needed

While I’m not a fan of having to buy multiple accessories to make a device easier to use, I’ve found that adding additional items to my devices can help tremendously with making them more comfortable to use. For example, I discovered that the keyboard that came with my desktop computer hurt my hands when I would type for long periods of time, so I replaced it with a large print keyboard that does not require a ton of pressure to push down the keys and that sits a bit higher. Other great examples include a stand/folio case for tablets so that they can be used hands-free, headphones that are comfortable to wear and that don’t put pressure on the neck, and devices like the Chromecast that can assist with screen mirroring.

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Bonus- make sure it can withstand small drops

People with Chiari Malformation can be prone to muscle spasms, weakness, or other issues that can make devices more likely to fall on the floor. For this reason, it is helpful to ask if the device can withstand small drops, or to look at getting a protective case/screen protector that can protect against accidental damage. It’s important to make sure these cases do not make it painful for the user to hold their device if needed, though many of these cases come in a slim/sleek design.

Summary of choosing new devices with Chiari Malformation

  • Make sure portable electronics can fit in one hand
  • See if the device has multiple input methods
  • Adjust the display for photosensitivity by turning down bright or flashing lights
  • Check out device accessibility settings
  • Think about how the device will be stored/carried
  • Add additional accessories as needed, such as a large print keyboard or case for tablets
  • Make sure it can withstand small drops

Choosing New Devices With Chiari Malformation. Getting a new phone, tablet, laptop, or similar device? Here are my tips for choosing new devices with Chiari Malformation and other chronic pain conditions/illnesses