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ALS & Technology

ALS, terminal, fatal, incurable, hopeless, and devastating. All of these words are synonymous with ALS. There is one more that has a profound effect on living with this horrible disease… Technology.

"...To cure ALS medically is not economical. The realities are that it’s difficult to find funding for research for a medical cure.I believe in developing technology as opposed to medical research. Technology can be economical."

~Steve Gleason~

Until the funding for ALS therapies catches up to the necessary levels needed, technology is the bridge to living. No, it’s not a cure, but it allows a manageable quality of life.

You may believe that technology is what keeps us alive. Some of it does, like a ventilator for breathing. However, I’m not talking about that technology. What I am eluding to is the technology that allows us to remain engaged with life, the world, our families, and our passions. Technology that gives us purpose when ALS crashes down on us.

Eyegaze technology, for example, yes it allows us to communicate our needs, desires, and wants. Beyond that, Eyegaze allows us to create, contribute, and connect with the world. It is not just our voice. It’s our conduit to life, allowing us to continue working, allowing us to find or continue our purpose. Purpose allows us to find meaning in our existence, existence with ALS.

Our existence is now dependent on technology. We depend on it to sustain our minds, souls, and the love that surrounds us. Yes, technology allows us to tweet, insta, thread, tok, and even FB (for us old folks). In other words, it allows us to be current and plugged into the world. Speaking of plugged in, don’t forget the powerchair.

Powerchairs, are they just conveyance? Nay, my able bodied friends. It is much, much more!

A powerchair is… liberating, empowering, and fun, yes fun. That is when you lose your fear of it and get good at maneuvering. The powerchairs of today are not a manual wheelchair with a motor and drive. Au contrer monfrere, they’re engineering wonders. Some powerchairs today can even climb stairs, is your mind blown. I once did the limbo in mine at a pool party.

A powerchair is a slow-dance facilitator. A powerchair is a super cool ride for children, while at the same time, a nemesis to nearby toes. A powerchair is our connection to the road, the wide open road that leads to adventure, and exploring life. It can also be a comfy place to nap, not just for us, but for our fur babies.

Technology is essential to living while dying. It doesn’t just fill our lungs. It fills our lives with purpose, meaning, and connections. No, it’s not a cure for ALS. But it does cure feeling lost or rudderles when hopelessness creeps in.


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Cher Frere, your ballad to the charms of the power chair makes it sparkle like a disco ball!

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