I haven’t lifted a finger in six years. It feels impossible. How could I possibly be living a life of any quality if I can’t use my hands? But I am.
I’m a C3/4 complete quadriplegic. I’m paralyzed from the chest down.
I won’t say hands are overrated or obsolete. There’s a million things I would like to do that absolutely require hands.
But not everything does.
Before I was the passenger in a car accident at age 32 I was really physically active. I worked in structural steel and most of my hobbies required full participation of my able body too.
But my most beloved hobby didn’t. All I needed was my teeth, a strong jaw, and good range of motion in my neck, and I could type with a mouth stick.
It was 2015 and I was two months into quad life when my occupational therapists at Banner University Medical Center in Phoenix (where I was doing my rehab) introduced me to mouth-typing.
I plucked at the keyboard of a desktop computer with this foot-long pointer, holding the plastic U-shaped mouthpiece with my teeth. It was slow and difficult. All I could think of were my hands that used to fly across the keys!
My therapists tried to help me with Dragon Naturally Speaking, so I could talk to type. I still had a tracheostomy and had to gasp for breath mid-sentence so it didn’t work well.
It wasn’t until I got home and wanted to get on my phone that we came up with mounting a touchscreen phone in front of my face and mouth-typing with a stylus pen. Later my brother came up with the idea of making our own mouth stylus pens (since they are crazy expensive like most adaptive/accessible products).
Do-it-Yourself Mouth stylus
• stylus pen (preferably metal)
• super glue
• duct tape
• popsicle sticks
• small round magnets
• phone mount
1. Cut six 2 inch pieces of popsicle stick
2. Glue them in 3 stacks of 2
3. Center one glued stack horizontally across top of pen and glue
4. Position other stacks, one on each end of the horizontal stack and glue (If the space between is too narrow or wide to fit your teeth, try again. Materials are cheap!)
5. Allow to dry
6. Secure more by tightly wrapping horizontal piece with duct tape
At night I have an over-the-bed table to which a phone mount is secured. The phone mount clips to the armrest of my power chair by day. A magnet glued to it makes it easy to hang the stylus up.
You can get a car phone holder at Wal-Mart or look up RAM or Modular Hose mounts which are more expensive but built to withstand serious peck-typing!
A few other items that help me with independence:
I drink water independently by using a special straw which can be manipulated to stay in place within my mouth’s reach. It’s called modular hose and it’s often used under the hood of a car. I bought a two foot length of the ¼” diameter hose. During the night I keep a 40 ounce aluminum thermos next to my bed, and next to my chair by day.
Calling for help
Products like Alexa are great for many reasons and one is the feature that lets you “drop in” and ask someone for help when they’re in another room. Previously I had used baby monitors, but that didn’t give me privacy or my caregivers quiet!
Controlling appliances and room temperature
I turn fans, heaters, lights and more on and off using smart plugs and a phone app, making me totally independent at night. Just insert the smart plug into a traditional outlet, then plug a device into it. The plug itself connects to your Wi-Fi, allowing you to determine when and for how long power reaches anything that’s plugged in.
Using my phone without a mouth stylus
I also use the Google Voice Access app on Android to give my jaw a rest. The app responds to my commands, among which is “Show numbers”. A number is then laid over each icon on the screen and you select buttons by speaking those numbers. For IPhone, it’s Siri.
Other apps can be used to interact with your phone, tablet, laptop and even TV with no hands. Open Sesame let’s you use your nose like a computer mouse. You can even purchase eye-gaze products like Tobii.
Getting a paint brush between my teeth has been great therapy, too. I love watching mouth painters on YouTube. I’m not so amazing at it, but it’s so much fun to create art again!
I was never a gamer but I think the technology that’s come out for quadriplegic PC gamers is super amazing. Check out the Quadjoy.
Life without hands doesn’t suck. We make things work because that’s what people do: adapt. These are a few ways I’ve adapted and tips that helped me along the way.
Read Cassandra’s past posts here