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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Technology and Chronic Illness by Reanna Mathis


reannamathis

Technology is bringing chronic pain and chronic illness patients together, allowing us to participate in life in ways that we normally would not be able to.  I volunteer with a non-profit as the Co-Editor of a blog, so I get to see first hand how technology is bringing patients together all over the world. Technology is not only making things more convenient but also creating a sense of family and comradery.  It is helping to combat the sense of loneliness and isolation we all have experienced. Resources are also something that are being made more available through the wonder of technology.

Applications for creating art

There are so many ways that technology can enrich the lives of people with disabilities. Currently, my new favorite toy is a painting application.  Before I got sick, I loved to paint and make art. Today, I have to weigh the cost to my health inherent in the traditional process of painting. My health is usually the one to win that analysis.  However, using the technology-image.thumb.jpg.80a546dbf3b5183973909dbb6301aebd.jpgpainting app there is no cleanup, and I can do it from my bed on my tablet. This is as close to painting as I can get, and if you have a stylus, it can make the art even more rich in detail. There are many different apps out there, some free and some a nominal cost, but for an artist who lost the ability to create, it is priceless.  

Zoom, Skype, Facebook Messenger Video and similar programs and apps.

Many of us know the loneliness and isolation that comes with being chronically sick.  I often wonder how people with these conditions connected in a consistent and fulfilling way before our techno boom.  I would say 90% of my interactions are through the marvels of technology. I have attended chronic pain support group gatherings via zoom. Zoom is a video conference chat app so you can see the faces of the people you are meeting with.  There are times when I cannot get out of the house for my mental health therapy. In those instances we utilize zoom. That practice alone saves my sanity regularly. I find comfort in seeing the face of the person I am conversing with. It feels more personal and more like  I am making a connection than a phone call does.

Accessibility programs and speech to text

Whatever form your disability manifests, most operating systems have accessibility options.  My personal favorite is Talk to Text dictation. This is an essential tool for days when symptoms create physical barriers to typing and writing. For me, there are days when my fingers don't work correctly.  Having the option to speak my thoughts and have them dictated, allows me to communicate more often with the people I care about.

For people who are blind or vision impaired, another form of accessibility is found on most websites.  Typed descriptions of images are included to allow access to those images via sound. For the deaf and hearing impaired, let’s not forget closed captioning, which is a feature on almost every new TV, computer and movies.  Since 1990, when the Americans with Disabilities Act was signed, closed captioning has been required for instructional and educational videos. However, over the years it has become an accepted practice for many other types of media.  More recently, programs have become available that can be operated by eye movements. These features are often utilized by ALS patients and people with paralysis. These types of programs allow patients who cannot communicate in any other way to interact.  There are even art and music programs being introduced that are designed to operate with eye movements.

Social Media

By definition, social media is designed to bring people together and to connect us. It is one of my favorite tools in my toolbox.  On almost every platform you can find a support group or community for whatever your disability is. It has had an overwhelmingly positive impact on the disability community.  I have heard many people say that when they found “their tribe” they no longer felt alone in their battle. It can connect you with people all over the world who share your conditions.  Also, social media has done wonderful things for awareness causes. Many illnesses, like dysautonomia and EDS, were virtually unknown by the general population. I have been able to use social media to educate family and friends and to share my day to day struggles. It also fosters resource sharing.  When new research or studies are released, the news quickly spreads across social media. Through "following" platforms like Facebook or Twitter belonging to groups like DINET or other dysautonomia organizations, patients have access to feeds of information that they wouldn't have had 15 years ago. This gives patients the ability to better advocate for themselves with their medical team and to explore the latest trends in treatments.  Of course, it is vital that care is taken to confirm the identity of the groups you follow and to be sure that you check all the information you see with medical professionals.

Smartphone and tablet apps

These days there is an app for EVERYTHING!  Including symptom trackers and health apps. One that I like is backpack health, you can put in all of your information, and they give you a personal URL that can be printed on a medical ID bracelet.

The Amazon Alexa is another device and app that is proving to be helpful for disabled people.  Along with the Echo, you can call for help if you fall from any room within listening range of the device.  You can activate the tablet or phone with Alexa’s name and give a command to call 911 or a family member for help.  I have personally used it to call my husband after falling. There are also smart plugs that have apps to turn on and off electronics, saving you from the need to get up.  There are also FitBit and apps like that that allow you to track health information. Being able to monitor heart rate and sleep cycles can be a useful tool in managing symptoms.  

There is no way I could list all of the ways smartphone apps make my life easier.  I can do most everything I need to do online now. Grocery Shopping, medication renewals and "to do" list applications, have all made my life easier and save me precious spoons that I need so I can be present with the ones I love. We are even able to read books through apps in bed or have them read to us.  When I am having a tough day and cannot read my daily meditations, I have them read to me through the app. I am virtually unstoppable as long as I have my phone!

Virtual Walk and Races

I have taken part in a Virtual 5K races for an organization that I volunteer with, and I loved the accomplishment.  Runners have been competing in virtual races for a long time, but it recently has been a part of awareness campaigns to bring attention to illnesses where people cannot attend in person.  You track your steps or distance in your wheelchair and register them with the event site that is doing the walk. Doing it at your own pace is a way we can reach our goals without compromising our health.  I wrote an article for the mighty on the impact of these virtual races. You can find it here: https://themighty.com/2017/11/virtual-races-awareness-walks-dysautonomia/

I polled the community before finishing this article, and I was amazed at how much we rely on technology to make our lives easier and more fulfilling.  Mobility devices are also making huge strides in technology and are utilized very often. So often, in fact, it may end up being a separate topic for a future article.   Adjusting to a less active life is one of the hardest transitions most people with chronic illness need to make. It was a hard transition for me. Looking at the way I used to do things and finding easier ways, was a turning point for me.  We found many solutions in using technology, and it has helped me live my best life. I still have a few things on my wishlist; such as a laundry folding machine (yes they make those!), a vacuum robot and a robot version of Dr. House. I hope after reading this, you also add some tech to your life!  If you have some ways that technology has made your life easier or more enjoyable, I would love to hear about it. Please share with the community in the comments.

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