Before I was diagnosed with ALS in 1985, I’d already decided I would never want to live if living meant being paralyzed and on a ventilator.
As an intensive care nurse, I dealt daily with patients in that situation. Trying to read the lips of those who couldn’t speak, or worse, the eyes of those with facial paralysis, knowing they were desperate to communicate basic needs, was frustrating and heartbreaking. Making their lives physically and emotionally comfortable was difficult. Their days were spent staring at the same four walls and a television whose channel they couldn’t change.
I wondered how they could bear the endless hours. No jaunts down the hall, much less a wheelchair ride outside. Just getting them into a chair was an effort because they were tethered to a machine bigger than a dishwasher. I hoped that somehow their brains could shut down imagination and desire, restlessness and boredom.
When I learned that I faced all that because I had ALS, I was horrified. Yet today I’m a vent-dependent quadriplegic and quite a happy person! Even though there still isn’t a cure for ALS, there are advances “around” ALS that have prolonged and improved my quality of life. I don’t take any of these advances for granted because I’ve seen life with ALS without them.
Vents and toilet seats
|Diane Huberty finds life with ALS more enjoyable, thanks to her computer and other technological advances.
In the late ’80s, a ventilator was developed that delivered air through a tightly fitted facemask rather than a hole in the throat. Little did I imagine that first CPAP (continuous positive airway pressure) would evolve into a BiPAP (bilevel positive airway pressure) machine that would keep me alive and breathing comfortably for six years until a ventilator was needed.
Neither did I envision what ventilators would be like. Today’s vent is the size of a laptop computer, making it portable far beyond the four walls of 1985. I can take a jaunt around the yard, a trek to the mall or a trip across the country.
Today there are CoughAssist machines, suction machines and power wheelchairs — and the changes go beyond medical technology:
Comfort has improved with customized wheelchair seating, memory foam mattresses, heated and padded toilet seats with spray bottom-washers, and warm air dryers!
Cell phones make family members reachable wherever they are. Emergency call buttons summon help if we’ve fallen and chairs with lift seats reduce the risk of falls.
And remote controls aren’t just for TVs anymore! Car doors, heaters, fans, gas fireplace logs, lights, window shades, doors — nearly everything can be put on a remote.
Can’t keep track of all the remotes? Get one programmable remote and teach it to do everything. Can’t handle those tiny buttons? Get a remote with oversize buttons. Can’t handle buttons at all? Get a light pressure switch and scanning device.
The simple invention of CDs has been a daily joy for me. When I could no longer turn book pages, I listened to books on tape — and dealt with hissing, snarling tapes and buttons I couldn’t push. CDs in remote-controlled, multidisc players mean accessible books and music.
The ultimate advance
For improvement in the quality of life for a person with ALS, nothing tops the computer. I’m entertained, informed and even productive thanks to my computer. It saves me from my worst fear: mind-numbing boredom and the need to shut down my brain to preserve my sanity.
Among other things, I use my computer to answer the phone; speak when my trach is cuffed and I can’t talk; play music, movies and games; maintain records for our neighborhood association; retouch photos; and design cards and T-shirts. I can’t wield a paintbrush or hammer, but I’ve planned projects from simple room rearranging to kitchen remodeling.
Thanks to the Internet, I read newspaper articles, research any topic, comparison shop, keep informed about ALS and communicate daily with others with ALS. And all of this is done with glorious, delicious independence.
I use Click-N-Type and Dasher, two on-screen keyboards, to type without using my keyboard, while Point-N-Click pushes the mouse buttons for me — and they’re all free programs.
As my ability to use the mouse deteriorates, I can substitute devices that track slight head or eye movements. The latest emerging technology is right out of science fiction. Soon, computers will be operated by thought!
Obviously, all these tech gadgets aren’t free. Some are covered by insurance and Medicare and others aren’t.
For items I have to buy myself, I compare brands and prices on the Internet, wait for sales and look for used equipment locally and on eBay. And I save receipts for tax deductions!
MDA is another resource. Besides items from their loan closets, they help pay for big-ticket items such as wheelchairs and speech devices, reducing or even eliminating out-of-pocket/co-pay costs.
Having had 20 years to accumulate my “toys,” I’ve learned that their expense is far outweighed by the quality of life they give me and the help they give my caregivers. Every day I use things that weren’t available when I was diagnosed in 1985 — and every day I think how lucky I am to have ALS today instead of before technology contributed to advances “around” ALS.
Diane Huberty, of Fort Wayne, Ind., writes frequently about tips for living with ALS.