Managing Muscular Dystrophy with Technology

…The new dawn blooms as we free it
For there is always light
If only we’re brave enough to see it
If only we’re brave enough to be it

–Amanda Gorman, US Youth Poet Laureate

All the signs were there: a weakening grip, shaky fingers, gnarling knuckles, random palsy…After five years of limited arm and leg functionality, meaning five years of being fed, wiped, dressed, and wheel-chaired, now my hand strength was failing. Then one morning last month, my iPhone unceremoniously slipped from my grasp and onto the floor like a loose pebble tumbling into a ravine. Facioscapulohumeral muscular dystrophy (FSHD) had come to claim my ability to hold and tap my phone, to text, to blog, to distract my soul from the dark, bottomless grief of compounding losses. Or so I thought. This is the story of managing another day of living with muscular dystrophy, and learning to write about it in a whole new way.

Stop the press?

There’s no sugarcoating that aging with progressed muscular dystrophy can be very challenging. And it is no secret to my husband, closest friends, and therapist that, although I fared very well until around age 51, now at age 56 I struggle, struggle mightily, with the ALL of it. The ever weakening limbs. The utter dependency on others for rudimentary actions and sustenance. The crushing fatigue. The mental stressors, pile ups of strain. The knowing a cure is not likely anytime soon – no magic pill, no corrective surgery, no hope. Sure, research is certainly being done for FSHD, but awareness of the rare disease is sorely limited, clinical trials slow, and more funding needed.

In the meantime, the resolve to endure and the power to heal must ultimately be self-generated. To release the issues in my tissues, and dispel the pent-up frustration and mounting stagnation stuck within them, movement is required. After physical therapy, writing is a potent form of movement and release in my – quite decidedly – ongoing journey. Self-expression generates positive vibes. Writing as a creative outlet enables even my most difficult thoughts and emotions to find safe passage.

So the morning it became seemingly impossible to independently type on a screen of any sort, I felt thin ice cracking beneath the burden of my already weighted spirit.

Turns out, there would be accessibility software for my perceived disability, technology that I will elaborate on shortly, especially for those who find themselves in a similar predicament.

Rebooting

Managing muscular dystrophy requires regular installments of acceptance and adaptation, a conscientious process subject to breakthroughs and occasional breakdowns. The crisis at hand (no pun intended) would involve both, starting with the latter. I flipped out. A full blown, nuclear grade anxiety attack mushroomed. And I am grateful, ever so grateful, for the amazing team of friends and medical professionals who – not for the first time – immediately responded to de-escalate my messy distress. Together, they emotionally carried me and my husband through an ugly, tearful afternoon.

That evening, my caregiver Kimberly made a special visit to give me a warm, relaxing shower, rinsing off the day’s drama. Her honed ability to listen empathetically, comfort reassuringly, and problem-solve assiduously initiated our search for practical solutions. The breakthrough at the end of a breakdown appeared like the kind of “new dawn” that Amanda Gorman poetically promises. Thanks in great part to such magnanimous communal support, I would be brave enough to see it.

Look, Ma, no hands!

Considering the subject matter of this blog, I’m probably speaking to the choir when I say that every new development in hands-free technology is more than just another slick gimmick or futuristic toy. For people with accessibility needs, myself obviously included, smartphones and smart speakers, remote controls and robotics, and mechanized furniture and motorized equipment literally serve as life support.

Alexa and Siri, for example, are more than just household names; these voice-activated apps connect me to the outside world when I am forced to rest in bed; they educate and entertain me, allowing me to forget my troubles for a spell; Alexa (coupled with Nest) enables me to control the heat in my room without aid; and both apps provide safety call support to my husband and caregivers. I can’t imagine managing muscular dystrophy without these hands-free assistants, and I know that I am blessed to have such resources.

All I needed now was an upgrade. Oh, and to learn a new command language.

Major Tom to Voice Control

On her next visit a few days later, Kimberly and I got to work researching, reviewing, and YouTube-ing the options in advanced dictation technology, the kind of stuff Christopher Reeve used after a spinal cord injury left him paralyzed from the shoulders down. And thanks to computer engineers dedicated to making his life and that of countless others like him more independent, what Kimberly and I discovered in accessibility technology was jaw-dropping amazing. Heck, there were several forms of software that could take dictation practically like a clairvoyant! It was simply a matter of choosing which one.

After intensive retail therapy, I purchased an iPad Pro because of the outstanding reviews about both the Apple tablet and Voice Control, which is already built-in. The 11-inch tablet would have a stronger microphone and greater visibility than my iPhone X, (which had Voice Control under Accessibility in Settings already [I know, right]); and the 11-inch tablet would fit into a holder so I could be completely hands-free. Plus, I am an Apple fangirl through and through. (PC lovers should definitely check out Dragon Professional Speech Dictation Software because it gets very good reviews too.)

Here’s exactly what I purchased:

  • 11-inch iPad Pro Wi-Fi + Cellular 512GB
  • Gooseneck Tablet Holder, Lamicall Tablet Stand: Flexible Arm Clip Table Mount

I give both products five stars!

Command Central

Making the world a more accessible place within which to live, work, and travel, benefits everyone, not just people with disabilities. Some examples: closed captioning expands the reach of art and understanding between nationalities (I know that I for one enjoyed Downton Abbey so much more because of this accessibility feature); ramped curb connectors ease the way for bikes and baby carriages, skateboards and scooters, and wagons and wheelchairs alike, and have prevented many a sprained ankle; ADA parking and accommodations grow business potential; and sign language interpreters showcase the talents of artists and actors who are differently abled. Computer accessibility technology is no exception. Apple’s Voice Control feature benefits anyone multitasking – cooks, parents, drivers, etc. – not just people with physical or motor impairments.

Voice Control works on iPhone or iPad with a command language, not unlike Alexa or Siri. It took me about a week to become proficient in writing, navigating, shopping online, and activating Netflix completely hands-free using just command functions. Every day I pick up a new command. Every day I am completely amazed by its accuracy and capabilities. Every day I feel more empowered.

Again, to activate Voice Control on your Apple iPhone or iPad:

  • Go to Settings
  • Open Accessibility
  • Turn on Voice Control
  • Say “Wake up” to activate Voice Control microphone
  • Here are helpful links regarding Voice Control commands:

    Completing download

    Managing muscular dystrophy with technology frees me beyond the confines of my condition. And although there will likely be more challenges ahead as I age with FSHD, Voice Control enables me to write and share my story of continually adapting and reinvesting in this ever-changing reality. I trust technology to stay ahead of the curve, and with perseverance, help to discover a cure for all forms of muscular dystrophy.

    Writing is not a quick and easy process for me, (and I can’t say that Voice Control necessarily makes it any faster,) but composing sentences, paragraphs, and posts helps me understand life. Through the written word, I can creatively explore the mystery of my condition and the lessons treasured within, foremost patience, (self-)compassion, and forgiveness. Writing heals me. And if my words and experiences inspire just one person in some brave way, then my efforts are twice blessed.

    Beep, beep.


    Special thanks to : Kimberly H., Jen F., Kathy B. & Craig H., Frank B. & Rose B., Crisis Preparation and Recovery, Talia T., David Z., Maggie V., and as always, my faithful husband Lou.

    Comment

    This site uses Akismet to reduce spam. Learn how your comment data is processed.