Miraculous Innovations Paving the Way for Those With Rare Diseases
One day about 15 years ago, I was watching a funny show. It was lighthearted and entertaining, yet one comment made me think seriously. It still does. A person said, “I heard that computers were a fad!”
Obviously, it was a joke. However, I thought to myself, “Where would I and others with SMA and other rare diseases be without computers or other forms of technology?”
For one, I type all my emails and other digital documents independently using a Tobii eye-gaze device. Instead of using my fingers, I just look at letters on an onscreen keyboard. Without this technology, I’d be dictating all my correspondence to a scribe so he or she could write it on paper. Having someone else know all my personal business would totally destroy any privacy.
Next, even before the pandemic, I’ve never been able to travel that easily. Don’t get me wrong: Before COVID-19, I did go out of town about every year or two. These trips took months and months of planning, though. I have a ton of medical supplies that need to be packed for each trip. It all has to be organized in a way that people can find what they need in a hurry for any medical situation.
Then I have to find which of my nurses can go with me. Sometimes they have plans of their own and can’t always go on a trip when I want to go. It’s certainly a challenge to line everything up with someone. It’s not like I can sporadically decide to go visit a friend who’s two states away next week.
That’s where the miracle of the internet and social media enriches my life. If I can’t go out into the world that much, then through these tools, I can command the world to come to me! Yes, I do mean “command.” With the power of technology, I have been able to influence the state Legislature. It in turn funds Medicaid programs that send nurses into people’s homes. Social media has even helped me staff my own case with home healthcare workers.
I believe that God controls the direction of my life. Yet technology gives me the ability to steer my life in ways that wouldn’t have been possible in the past.
Finally, I don’t just use computers and other gadgets for serious projects. When I was a kid, about 30 years ago, there weren’t a lot of options available to me for personal entertainment. Free time would come after I finished dictating my homework to a scribe, as there was no adaptive equipment yet that could help me type easily. Then I mostly just watched TV. I was fine with only TV at the time because that’s all I was used to.
Now, if all I did for entertainment was watch TV, I would get bored superfast. With the use of adaptive technology that makes use of what little muscular movement I have, a lot more options are available to me. Now I can play PC games, for instance. Furthermore, since my Alexa device can’t understand my regular voice, I use my computer voice to talk to it and listen to music. I can also pick out an audiobook to listen to without relying on somebody else to turn the page.
I’ve been trying to describe the hope that technology can bring, since many times people hear about the dark side. Issues such as bullying on social media can be very harmful, and I wouldn’t wish it on anybody. When used the right way, though, technology can lift people with rare diseases as never before.
All of you certainly couldn’t be reading my thoughts without such innovations. Who knows what’s possible in the future?
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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