Optimized Living: Helpful Existing Technologies for Life with Dysautonomia

By: Chelsea Goldstein, Dysautonomia Information Network

One of the many difficult aspects of living with dysautonomia is that very few products are designed specifically for our needs. The medications we take are usually considered "off-label" for dysautonomia, we use hydration products designed for athletes or children, and assistive technology is often created with other populations in mind. I will continue to dream of, and advocate for, a world where people with dysautonomia have a voice in the creation of technologies that support our everyday lives. 

In the meantime, this article will share a handful of technologies that people in our community use regularly. Each product will include a dollar sign rating to indicate cost (FREE; $ = 0-20 USD; $$ = 21-50 USD; $$$ = 51+ USD). DINET is not affiliated with any of these products or companies, we do not receive any benefits from sharing them with you, and we have vetted the products we have not personally tried through reliable third party resources. If you do, however, want to support DINET don't forget that you can shop through our Amazon Smile page! There are thousands of technologies we don't talk about in this article that may help you, and we applaud your creativity for adapting them to fit your needs. Just make sure to always do your research on any new gadgets.

Symptom Management
The amount of technology available to monitor specific symptoms and to manage symptom flares is overwhelming. Here are a few that may be specifically helpful for people with dysautonomia:

Portable Fan ($ - $$) The fan technology has come a long way in the past several years. There are rechargeable USB options that can sit on desks, as well as ones that fit around your neck for hot summer days. We know how overheating can come on quickly and relentlessly when you have dysautonomia, and a portable fan may help you minimize symptoms. One person reports carrying a small fan around the house with her at all times, and setting it next to her bed when she sleeps (1). 

No Touch Thermometer ($$) Body temperature has become an important measurement in the age of COVID-19, but the standard body temperature ranges don't always fit people with dysautonomia. My temperature runs unusually low, but it's not uncommon for it to spike into "low grade fever" range after being in the sun for just a few minutes. A no touch thermometer is easy to use, and it has helped me identify my body temperature patterns. This has given me peace of mind when my temperature spikes, as well as helped me explain my temperature regulation symptoms to others. 

Pulse Oximeter ($$) This is a convenient and portable tool to measure pulse rate, pulse strength, and blood oxygen saturation levels. This can be especially helpful for people with POTS to track their pulse rate when they change positions (1).

Apple Watch ($$$) This is an expensive product, but its heart monitoring features may make it a worthwhile investment for people with dysautonomia. It can monitor your heart rate and notify you if it is unusually high or low (you can change the heart rate range to fit you), it occasionally checks for irregular heart rhythms, and you can download an app to get an ECG reading. Note that these features are currently being reviewed through scientific studies, but show promising initial results. It also has embedded fall detection, can serve as a medical ID bracelet, and can store your health records through the health app (2). While all of these features can be immensely helpful to detect unusual circumstances and to help you understand your health patterns, you should seek professional medical advice, testing, and monitoring for any  suspected heart irregularities. Fitbits have many similar features (3).

Symptom Monitoring Apps (FREE - $) Blood pressure (BP) apps allow you to input your BP data to visualize patterns over time, set reminders, and export your stats. Both Blood Pressure Monitor for iOS and Blood Pressure Watch for Android are free with in-app purchases (4). Plant Nanny is a free app that helps you ensure hydration, and Manage My Fatigue helps you manage tasks to optimize energy levels (4). Let's not forget Daylio, a super-cool app that helps you identify patterns in your mental health (6).

Health Management
Similar to many symptom management technologies, these products can help you track and organize health data to improve your overall understanding of your health.

Symptom Tracking Apps (FREE - $) The symptoms of dysautonomia are so numerous and intertwined that it's difficult to identify specific symptom patterns. These apps provide a single platform to track multiple symptoms so you can better understand your health changes over time. Flaredown is a free tracking app designed for chronic illness, and Tally and Symple are both free with the options of paid upgrades. CareClinic embeds medication reminders and is $9.99 per month (5). You may want to explore a few options to find one that can be customized to your specific needs.

Medisafe App (FREE) This is a medication reminder app that is reported to be incredibly helpful by a number of people with chronic illness. It provides medication reminders (take that, brain fog!), warns of potential drug interactions, and you can even communicate with healthcare providers through the app (6). 

Health Record Management (FREE) Raise your hand if trying to organize, track, or find your health records has induced a migraine! Backpack Health is designed to organize your records digitally, and it can be used on most electronic devices from smartphones to laptops (4). If a new app sounds daunting, I also like to use Google Docs to store all of my records in organized folders that are easy to access at doctor appointments through the app. This document discusses the HIPAA compliance of Google products. Another frustrating aspect of medical records is trying to view images from our many, many medical tests only to find those images aren't supported on our computers! RadiAnt is a free, downloadable program that can open most "DICOM" files, such as CTs, MRIs, and Ultrasounds (4).

Smart Medical Reference (Free) In a perfect world, we would leave every doctor's appointment with a clear understanding of the records we reviewed together, the medications prescribed, the bodily mechanisms explained, and our next steps. I, for one, do not live in that perfect world. We suggest reading our articles on Navigating the Health System for effective communication strategies with doctors, and the Smart Medical Reference app is a great resource to make lab values, medications, and other medical terminology even more accessible.

Telehealth (Variable) While COVID-19 has been harrowing, one silver lining may be that it has encouraged more doctors to use telehealth. Certainly there are instances when in-person visits are crucial, but if it takes excruciating energy to get to appointments, or the thought of entering a medical establishment triggers nightmares of giant, personified infectious germs (just me??), then you may consider talking to your doctor(s) about transitioning some of your care to telehealth.

Relaxation & Sleep
Sleep and relaxation are important to help regulate the autonomic nervous system. However, sleep, especially, doesn't always come when we want it to. These tools can help.

White Noise Machines (FREE - $) It's no secret that sleeping is not usually one of our talents. A major tool that helps compensate for my subpar sleep skills is a white noise machine that drowns out all those teeny-tiny noises that stir me awake. There are thousands of options from smartphone apps to stand-alone machines. 

But, what if your partner can't sleep with white noise, or worse, their snoring overpowers it! Enter pro tip: these Bluetooth Sleep Headphones have been a magical addition to my life. The headphones are soft felt embedded in a comfy headband (not the kind that gives you a headache) so that you can channel that beautiful white noise directly to your eardrums without the pain of earbuds jabbing you throughout your slumber. The headband even creates a surround sound effect and can be pulled over your eyes to double as an eye mask. I promise, I'm not getting compensated for this endorsement... I just have a slightly unhealthy obsession with these headphones.

Meditation and Breathing Apps (FREE - $) I know, I know - you've probably been told 1,000 times that you "just need to relax" and "take some deep breaths." That is not what this article is saying - we know these apps won't cure your dysautonomia. We also know from research that meditation and deep breathing can activate the parasympathetic nervous system (the one that encourages slower heart rate and digestion, 7). So while relaxation techniques probably won't cure your conditions, they may help you manage some of the symptoms. There are several apps that you can use to guide your meditation or breathing practices:

• The Headspace app is a great tool for those who want to build a regular meditation practice into their day. Their short meditations are designed for beginners, you can track your progress in the app, and you can even pair with another user for accountability.
• The Calm app is another popular meditation resource. It provides guided meditations, breathing exercises, and even sleep stories.
• TaoMix2 also comes highly recommended. It provides multiple soundscapes, such as background chatter or crashing waves, that can help you relax, meditate, and sleep. You can even create custom sounds by mixing and matching the ones in their library (6).

Computer Use & Executive Function
Most things happen on devices these days. These techy tools may help you work with those devices:

Windows and iOS Accessibility Features (FREE with device) Both Windows and iOS offer accessibility features for laptops, desktops, tablets, and smartphones. Text size, color, and icons can all be modified to fit your viewing needs. For example, you could minimize the contrast or brightness on your computer screen to decrease chances of a migraine. Both systems also offer screen reading technology and magnifying options to increase the size and resolution of specific content. Details on iOS and Windows accessibility can be found at these respective links. 

NonVisual Desktop Access (NVDA) (FREE) This is a free, downloadable screen reader that is compatible with Windows devices. Two men who are blind started the non-profit that designed this program with the mission that everyone deserves access to computers. If you are able, you can make a donation on their website to help sustain this awesome, free product (4). 

Notes and Reminders on iOS (FREE) Has the statement, "Remind me to do X tomorrow" ever worked for you? Yeah, me neither. The Reminders app  is a way to actually remind yourself to do the thing tomorrow so you don't have to stress about remembering that to-do item today. I also keep several running lists in my Notes including a grocery shopping list, gift ideas for specific people, and even song, book, and movie recommendations. Without having ready-to-access lists with me at all times, I would definitely forget the thing I just thought of approximately five seconds after I thought of it.

Lists can also be shared and updated by multiple iPhone users so that you and your family members don't have to constantly remind each other to grab items at the store, for example. There are similar features available on Android phones. 

Google Calendar (Free) Most of us with brain fog need multiple systems to stay organized. Paper planners are great, but an online one means you don't have to worry about bringing your planner everywhere you go. Google Calendar can be accessed on all of your devices, you can input events the moment they come up, and you can even color code them if organization makes your brain fog give a large sigh of relief. I love that the  calendars can be shared with others. This feature can be incredibly helpful for coordinating rides to appointments, etc. 

Trello (Free) I promise this is the last time management tool I'll mention in this article. Lists and Reminders are great ways to track those day-to-day obligations, and a Calendar is wonderful for scheduled appointments. However, I can feel a little lost in the sea of brain fog without one centralized location to track everything I need to get done. This is where Trello comes in. It is essentially a master to-do list that can be broken down into multiple, more manageable lists. For example, I have a list of items I am currently working on, a near future list, and a "Parking Lot" list of things that aren't as urgent. Items can be color-coded (e.g., all of my medical items are green), and when you click on each item you can add a checklist of multiple steps, write a more detailed description of the item, add a due date, and even invite other people to edit and view the item. These features reduce my stress because I know all the things I need to get done are organized and easy to view in Trello, but I can focus on just the most immediate tasks. Pro tip: when I complete an item I move it to a "To-Done" list. Anytime I  get down on myself because I don't have enough spoons to accomplish as much as I intend, I look at my growing "To-Done" list to remind myself of all that I have already accomplished.

Audio and Video Recording (FREE - $) Most smartphones and laptops are able to record audio and video. These can be really valuable tools if you miss a meeting or class due to your illness. In graduate school, I had a friend audio record classes that I missed for medical appointments. She also shared a copy of her written notes, and the combination of visual and audio material helped me stay on track in the course. If you are unable to attend a class or meeting in-person or virtually, these can be great tools to supplement written notes or minutes. Some people even like to audio record a class/meeting when they are present to review later and help combat brain fog. Just always make sure that you have permission, and everyone in the space is aware that you are recording.

Livescribe Smartpen ($$$) This is one of those expensive products, like the Apple Watch, that may be worth the investment for some people. It is a pen that audio records a lecture, meeting, etc. while you take notes. The cool part - it syncs what you are writing with the audio, so you can "click" on a written note and it will play the audio from the respective portion of the recording. This can be a really efficient way to take notes and study. It can also be helpful if you struggle with taking complete written notes due to brain fog or hand pain. The written notes can also be uploaded to a computer or mobile device. You do, however, have to purchase specific paper and ink cartridges that work with this pen (4). 

Online Banking (FREE) Most major banks have robust online banking platforms that can be accessed through an app. There are even some online-only banks. It is no secret that having chronic illness can get expensive, so financial management often becomes an important aspect of our lives. Online banking allows users to complete a ton of activities from home (a definite win - I would rather not use my spoons to go to the bank!). You may already monitor your account balances through an online banking app, but you can also do a host of other activities including depositing checks, paying bills, transferring funds between accounts, searching past statements and transactions, and getting quick access to account information. You may not realize that most banks also have a tool to exchange money with individuals, similar to Venmo (8). As an independent contractor, I am paid through these types of platforms so I do not have to worry about waiting for checks, or setting up direct deposit.

Media & Entertainment
Dysautonomia can keep us at home more than we would like, especially with COVID-19. These technologies can help us stay entertained and connected: 

Streaming Services (FREE - $$) Most of us take advantage of streaming services to provide some entertainment when all we can do is curl up in bed. Since chronic illness is expensive, it's critical for many of us to find free or cheap entertainment. Here are some options:

Free Streaming Services (9): 

• Peacock Free - NBC's free streaming service with shows like Parks and Recreation
• Crackle - Has original shows and a nice movie collection
• Vudu - Best for movies
• IMBDtv - Free with a Firestick or Amazon Prime
• Tubi - Has a "Not on Netflix" section
• Pluto TV - Has some live channels
• Sling Free - Has some live channels & on-demand movies
• Xumo - Access to live news and sports
• Youtube - A lot of free content, including DINET's channel!

Free Trials (10): 

• HBO MAX/HBO NOW - 14 day trial, then $14.99/month
• Hulu - 30 day trial, then $5.99 - $11.99/month (Students get a 3 month trial of Hulu, Showtime & Spotify Premium, then $4.99/month for all 3)
• Prime Video (with an Amazon Prime membership) - 30 day trial, then $13/month (Students get a 6 month trial, then $6.49/month)
• Netflix - 30 day trial, then $8.99 - $15.99/month
• Disney+ - 1 year free subscription with most Verizon accounts, then $6.99/month (Disney+, Hulu & ESPN+ all available for $12.99/month)
• Sundance Now - 30 day trial, then $4.99/month
• YouTube Premium - 30 day trial, then $11.99/month ($6.99/month for students)

Note: These offers were in effect September 2020, they may change depending on when you read this article.

Subtitles (Free) All the major streaming services and live TV options include subtitles. I find that my brain fog can impact my ability to keep up with shows, but subtitles provide a combination of both hearing and seeing the dialogue that helps me process it better. 

Podcasts & Audiobooks (Free - $) Sometimes vision disturbances can make it difficult to watch TV or read books. On those days, I like to lay with my eyes shut while listening to a podcast or audiobook. Podcasts are free and they cover every topic you could imagine. They can be accessed through built-in apps on most smartphones. 

Many local libraries also give members access to a digital library. Contact your local library for availability and instructions to set up. My library works through an app called Libby and I can "check-out" eBooks and audiobooks on my phone. Just like the library, you may have to be on a wait-list for popular titles, and you "return" the book after a specific amount of time. Also just like the library, access is completely free! Alternatively, Audible offers a collection of audiobooks and has good reviews. You can get a 30 day free trial, and it will cost $7.95 - $14.95/month after that. 

Virtual Art (FREE - $$$) We've witnessed the amazing creative talent in the dysautonomia community, but we also know that setting up, using, and cleaning up art supplies may require spoons you don't have to give. We don't want that to keep you from your creative expression, and there are a number of artistic apps that can be used on a tablet with a stylus to create beautiful works (11). Many of them are free or low cost, such as the apps listed here, and they range to more expensive products like the Adobe Creative Suite ($52.99/month and $19.99/month for students). 

Virtual Learning (FREE - $$) The type of virtual learning we discuss here is not necessarily for accreditation, but rather to build a skillset or learn something new that has always peaked your curiosity. Duolingo is one of my favorite apps to pass the time when I want to feel like I am expanding my mind. You can learn a number of languages using the app, it is very low pressure, and all of the learning activities are designed as games. Also, it is completely free. Skillshare offers courses on virtually any topic you can think of from business skills to candle making. Some courses are free, and a monthly subscription is $19.99. MasterClass is similar to Skillshare with the primary difference that all the classes are taught by well-known figures. A monthly subscription is $15, and select classes are available for free through MasterClass Live.

Virtual Outings (FREE) Understandably, social distancing and quarantining for COVID-19 have evoked some complicated emotions in us. On one hand, it is great that more and more resources are becoming accessible from home. On the other hand, it hurts that these resources only became available when the non-chronically ill population needed them to survive  COVID-19 quarantine.

Nevertheless, one of the forms of entertainment that have recently become accessible to us are virtual outings. Many museums, including the Smithsonian and the Louvre offer digital collections and virtual tours, and science/outdoors organizations like NASA and WildEarth have live streams. This is a well-thought list of a number of virtual outings. Live concerts, musicals, and even music festivals are now also offered online. Here is a great list of different streaming options. Many artists are sharing live concerts on their social media, so look up those musicians you love!

Connection (FREE) Most of us have been familiar with virtual friendships long before COVID-19, so don't forget the power of connection, especially when things get tough. We now have a ton of options from traditional phone calls to Zoom, Facetime, Skype, and social media. Forums, such as the DINET forum, can be great places to find support and connection for living with chronic illness, and there are even social gaming apps, like Houseparty, to play live virtual games with friends.

Around the House

Amazon Alexa ($$$) Voice-activated virtual assistants, like Amazon Alexa, can be used to make life a little easier with chronic illness. One of our members feels safe at home because she can have Alexa call her husband or emergency services when she falls (11). If you struggle with movement, strength, or pain in your hands you can use Alexa through voice activation to set reminders, timers, alarms, add to your shopping list, set a calendar appointment, check the weather, or even do an internet search (12). 

Smart Thermostat ($$$) Since temperature regulation can be a difficult symptom for many of us, a smart thermostat may be a great option to easily manage the temperature of your home while minimizing electric costs. One benefit of these thermostats is that you can change the temperature from your smartphone so that you do not need to get out of bed on a tough day, or you can change it on your phone when you are out so it is at the desired temperature when you get home (12). 

Smart Lighting ($ - $$$) Smart lights and plugs can help make your space more accessible. They can be operated from your phone so that you can turn on lights in a room before you enter, or before you get out of bed. You can even dim them from your phone if bright lights trigger symptoms (12).

Electric jar and can opener ($-$$) This is one of those overlooked devices that can be a huge help. Sometimes I don't have the strength to manually open jars or cans when I am in a flare. It is these times that I am also looking for simple, easy to digest meals, and a lot of those, such as soup, come in cans. An electric can/jar opener is a fairly cheap gadget that can preserve those last spoons for more meaningful activity.

Tile ($$ - $$$) If brain fog causes you to misplace important items frequently, you may want to consider Tile. You can add a tile to your phone, wallet, keys, or even medication box. Using the phone app, you can ring Tile so you can find any misplaced items. You can also click the Tile square twice to make your phone ring even when it is on "silent"!

Waterproof Doorbell ($) One of our members installed a waterproof doorbell in her shower so she can ring it when she needs assistance (13). We thought this was a pretty clever adaptation! 

Meal and Grocery Delivery (FREE - $$$) There are a plethora of meal and grocery delivery services available these days. There are even options for dietary restrictions, such as vegan or gluten free. Many options send pre-portioned ingredients and recipes to make cooking easier, while some even provide ready-made meals. In addition, many grocery delivery services are being offered for free due to COVID-19.

Resources

Article Citations

1. Wyant, P. (2018, September 24). 12 Products People with POTS Swear By. The Mighty. https://themighty.com/2018/09/pots-dysautonomia-treatment-products-coping
2. Apple Watch Healthcare. (2020). Apple. https://www.apple.com/healthcare/apple-watch
3. Fitbit Health Solutions. (2020). Fitbit. https://healthsolutions.fitbit.com/somuchmorethansteps
4. Assistive Technology and Devices: High Tech and Low Tech Solutions for Life with Dysautonomia. (2019). Dysautonomia Support Network. https://www.dysautonomiasupport.org/assistive-technology
5. Menchaca, D. (2020, February 20). 5 Symptom Diary & Health Journal Apps. Teamscope. https://www.teamscopeapp.com/blog/5-diary-apps-for-tracking-symptoms
6. Wyant, P. (2017, August 31). 17 Apps That Make Life Easier When Brain Fog Takes Over. The Mighty. https://themighty.com/2017/08/apps-brain-fog-organization
7. Keys, A. (2018 August). Self-care: Why it Deserves a Place at the Top of Your To-do List. DINET. https://www.dinet.org/content/information-resources/newsletters/self-care-why-it-deserves-a-place-at-the-top-of-your-to-do-list-by-amy-keys-r199
8. Pritchard, J. (2020 September 12). What is Online Banking? What to Expect When You Bank on the Web. The Balance. https://www.thebalance.com/what-is-an-online-bank-315204
9. Woo, K. (2020, July 16). The Best Free Streaming Services. Tom's Guide. https://www.tomsguide.com/best-picks/best-free-streaming-services
10. Try the 27 Most Popular Video Streaming Services for Free (2020). Slickdeals. https://slickdeals.net/article/list/best-free-trials-popular-online-video-streaming-services/
11. Mathis, R. (2019, February). Technology and Chronic Illness. DINET. https://www.dinet.org/content/information-resources/newsletters/technology-and-chronic-illness-by-reanna-mathis-r212/
12. Patel, V. (2017, September 3). 7 Most Useful Smarthome Devices for People with Disabilities. Rolling Without Limits. https://www.rollingwithoutlimits.com/view-post/7-Most-Useful-Smart-Home-Device-for-Individuals-with-Disabilities
13. Keys, A. (2019, February). Finding Workarounds. DINET. https://www.dinet.org/content/information-resources/newsletters/finding-workarounds-by-amy-keys-r214/

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