Do It Myself Blog – Glenda Watson Hyatt

While in Chicago, I made a short trek to the Apple Store. My mission was to try out an iPad, which are still unable here in Canada until May 28th, to see if I could reliably use the touch screen with my shaky athetoid cerebral palsy. The reason for wanting an iPad is to use it as a communication device while I’m out and about.

I spent an hour playing with the thing, not quite sure what I was doing. Although I did manage to get a tweet out with minimal typos:

Once I had had enough playing, I attracted the attention of the young Apple employee Courtney and indicated that I was ready to buy one. She said they were sold out. My heart sank. Then she found one in the back room, and when an employee looked surprised, she said that one was special. (I sensed a shipment had just arrived, but had yet to be inventoried.)

Courtney spent a good hour with me, activating the device and then setting up an iTunes account to download the Prologuo2Go appp. I was impressed by the time she spent with me, as well as how she treated me. Thanks Courtney!

In the end, I purchased the iPad 32G WiFi, iPad case and the protection plan (I usually don’t buy them, but just in case) for $802.40 USD (including tax) and $215 in iTunes gift cards for the app (there was glitch with me being from Canada and purchasing gift cards to buy the app was the work around). In theory, I now had a communication device plus much more for $1,217.40 USD. That’s what credit cards are for, right?!

I left the Apple Store completely amazed by Courtney’s service, but not totally convinced I had made the right decision with purchasing the iPad.

I then headed back to the the hotel where I was meeting my friends Karen and Amy, one of which is Deaf and the other is hearing impaired. I only had a brief time with my iPad before putting it to the test as a communication device. But, that was long enough!

I discovered the Proloquo2Go app also has keyboard, as well as the predefined categories and phrases, which will take some learning and memories where specific words are. The neat thing is phrases can be added and customized, which may prove useful over time – once I get to add them.

But, the keyboard proved the most useful. When I’m communicating with people, they typically get stuck on a word or two. With the onscreen keyboard, I can type out the words – like I did with the low-tech alphabet card but remembering what I had pointed to was tricky for some people. With the iPad, they can read what I had typed – or I can have it “speak” the words, Although that was pointless for Karen and Amy who couldn’t clearly hear the text-to-speech voice.

(Photo credit: Karen Putz)

Later that evening I attended the Social Media Club event. Again, the iPad proved useful for communicating. And, even later at the bar, hanging out with Ben Curnett, George Krueger and Mary-Lynn Foster and others.

Mary-Lynn and I were having quite a conversation. Because of the iPad’s back light and clear display, we had no trouble using or reading the iPad in the dimly lit bar. The font size in the Proloque2Go app was also large enough to read from a comfortable distance.

The really cool thing was, because the Holiday Inn and bar had WiFi, I had internet access. When Mary-Lynn asked what I had been up to and I responded problogging and ghost writing, I was able to go to the dotgov blog to show her what I had written. I also showed her the video of me ziplining. The iPad allowed for another level of communication I would not have had with another communicator.

Another night a group of us were at Morton’s Bar and Grill, making plans to go to karaoke, which turned out to be inaccessible but that’s another story. My friend Hope was having trouble figuring out what I was saying and she asked, “Where’s your iPad?” In that moment, I felt a sense of normalcy and acceptance. Using an iPad, which could become as commonplace as the Blackberry and iPhone, is not yet another thing that makes me different. I wasn’t using a strange, unfamiliar device to communicate with this group. People were drawn to it because it was a “recognized” or “known” piece of technology rather than being standoff-ish with an unknown communication device.

I liked how as soon as I turned it on and slid the lock, the thing was ready to go. There’s no need to wait for it to boot or for programs to start; the apps start immediately. Although there were a few times when the iPad appeared unresponsive, even when others tried it. I found restarting fixed that; perhaps there’s another trick when that happens that I have yet to discover.

Initially I held that iPad in the landscaped position on my lap, giving me the largest size of keyboard. This way I was able to steady my hand against my abdomen and type with more than only my left thumb, which was a novel concept. And, at times, the screen would spin around and I would need to type upside down until I figured out to spin the screen back. A way to turn down the spinning sensitivity would be great.

Typing accuracy wasn’t perfect; I was discouraged and having second-thoughts about my purchase. But, a few days ago I realized my typing wasn’t perfect on my old Smith Corona typewriter with keyboard or on my various computer keyboards, erasing my doubts about my purchase decision.

While killing six hours at the O’Hare airport, I discovered that holding the iPad in the portrait position yet sideways on my lap with the small-sized keyboard parallel with my thigh, I could guide my hand along my thigh and type with my left thumb. My typing speed and accuracy was surprising; I’m curious to test if my typing speed is any faster on the iPad – that’s another post. Although I do envision myself sitting out on the deck, on the couch or comfy in bed, writing.

Then, I did something I had never done before: I went into one of the many Starbucks at O’Hare and ordered my first mocha frappuccino by myself. No misunderstanding or hand gesturing involved. It was so cool, like another door had just opened for me!

I feel like technology is finally catching up with what I truly need.

To keep up with my adventures, musings and insights, sign up to receive my future posts via email.

Augmentative and alternative communication (AAC) devices enable individuals with speech impairments and those who are non-verbal to communicate. However, for the most part, these devices serve only one purpose: communication. If the individual wants to perform another task, another piece of technology is needed. These devices are typically heavy and pricey; for example, the DynaVox M³ weighs 4lb s11oz and costs $3,285USD; the DynaVox V and Vmax, with somewhat more functionality, weigh 4lbs 11oz and 6lbs 14oz, respectively, and come with hefty price tags of $7,820USD and $8,420USD. Accessories are extra, of course!

Enter the newest, hottest gadget the iPad…weighing a slim 1.5 pounds and starting at $499USD.

Add the Prologue2Go application – communication software for the iPhone, iPod touch and now the iPad – for $189.99USD and you have an augmentative communication device, which does more than communicate, for a fraction of the cost.

However, with its touch screen, how user friendly is the iPad for people with shaky or jerky hand control? Will things be uncontrollably flipping by on the screen or will apps be flying open unwontedly? Will I inadvertently say something I did not intend? Will this device be more frustration than it’s worth?

With touch screens being the next wave in technology, I’m curious to see whether I will be able it use them accurately even with my questionable hand control. Next Wednesday I am off to Chicago for SOBCon2010: Biz School for Bloggers. Thursday is my one free day and, being mere blocks from an Apple store, an iPad may find its way into my possession. (iPads aren’t due out in Canada until late May.)

If I’m lucky, I will also download the right app from the App Store and have a new communication device in time for SOBCon. Taking an unproven, unfamiliar, uncustomized AAC to a lively, highly sociable conference – nothing like living on the edge!

I’ll also have my trusted, low tech alphabet card with me…just in case!

Yes, that is Montel Williams! At the HealthTech  Innovation Hub in Surrey.

Please forgive the quality of the photo. The story behind the photo is of much more significance.

I will attempt to explain the circuitous journey that brought me to this point.

A few months ago, Dad strongly recommended that I read Norman Doidge’s books The Brain That Changes Itself and The Brain’s Way of Healing – both of which explore the field of neuroplasticity. I had heard of neuroplasticity and the possibility of reprogramming one’s brain through Riley Dayne’s The Abundance Factor movie and program and, although intrigued, I had yet to explore deeper. It just hadn’t yet become a priority.

However, with Dad’s continued talk about the topic and fall weather upon us, I borrowed Doidge’s second book from the library – thinking that starting with his most current book made the most sense – and curled up in bed and started reading. It isn’t the easiest book to read, perhaps because I am not the fastest and most avid reader; I ended up renewing the book three times.

But, fascinating!

How scientists, researchers and forward-thinking medical professionals are using light, sound, electrical stimulation, constraint-induced movement therapy and the like to treat conditions that, until now, were thought to be unchangeable; conditions like traumatic brain injuries, Parkinson’s, autism, dyslexia, cerebral palsy and such.

As a child I endured years of physio, occupational and speech therapy and several torturous orthopedic surgeries. All were to treat the effects of cerebral palsy, but no one ever treated my “damaged” brain, the root cause of my disability. I received nothing like treatments discussed in this book.

The chapter about the PoNS (Portable Neuromodulation Stimulator) – a device used to non-invasively stimulate the nerves in the tongue, two inches from the basal ganglia in the brain — completely enthralled me. I consulted with Google and kept digging. This is when the journey began getting exciting.

I discovered that former TV host Montel Williams, who was diagnosed with multiple sclerosis in 2000, began seeking out options when his symptoms started progressing in 2007. According to the CTV news story, he came across the tongue device being tested in a research lab at the University of Wisconsin-Madison.

Montel was so impressed with the results he experienced using the device that he co-founded Helius Medical Technologies to “partner with top organizations to pioneer unique, noninvasive platform technologies that support neurological wellness.” (This might be an oversimplification of the details. I’m still reading! More background is available on the Helius website.)

With some more digging, I also discovered that Helius had conducted a pilot study using the PoNS device on children with cerebral palsy in Russia. The results sound promising, although I have yet to find a copy of the study translated into English. However I did find this video from the 2015 Russian Pilot Study:

I know not to believe everything I see on the internet and to question all; however, watching this video made me want to know even more. Perhaps there is something here that is legit. Perhaps permanent brain damage need not be permanent or, perhaps, not as severe.

Coincidentally (or not), in mid-November, as I was beginning to wonder if there were any local resources related to neuroplasticity and where I might start looking, co-chair of Surrey’s Measured Up Committee Marco Pasqua emailed committee members with the link to West Coast Centre for Learning (WCCL) as a interesting new resource in the community. Likely because I was avoiding a boring task or some other reason for procrastinating, I spent some time poking around the site and I was intrigued. Without overthinking it, I emailed them for more information.

After several emails back and forth with Lynda Brind Dickson, the Coordinator of Community Learning Partnerships about what WCCL does, about my interest in neuroplasticity and such, we scheduled a time to meet. Heavy rains were forecasted; we postponed our meeting.

Meanwhile, I kept poking around. WCCL is located at HealthTech Innovation Hub, which is in a new building across from the Surrey Memorial Hospital – all of which are located along the City of Surrey’s Innovation Boulevard. From what I understand (at the moment), HealthTech is an incubator for brain health technologies; WCCL is one of the several businesses developing software, applications and devices in the space. It is all very exciting and somewhat futuristic-sounding.

Lynda and I rescheduled; a major snowfall was forecasted. We postponed, all the while continuing to chat via good ol’ email.

I kept reading Doidge’s The Brain’s Way of Healing and poking around online, connecting the dots.

Then, bingo!

I found a local announcement seeking individuals with traumatic brain injuries (TBIs) for a clinical trial of the PoNS device. Helius Medical Technologies had received from the military to conduct a proper, double-blinded clinical trial of the PoNS. AND…HealthTech Connex was one of the four test sites!

The device that I had read about in Doidge’s book, that Montel Williams had tried at the U of Wisconsin and, subsequently, co-founded Helius, that had been piloted with Russian kids with cerebral palsy was now in clinical trials a mere five blocks from where I am writing this.

Christmas came and went, snow fell and melted, fell and melted. Lynda and I scheduled to meet on February 10th because, surely, by then the snow would be gone for good. We were wrong. More than a foot of snow over the prior weekend, which is really unusual in Surrey in early February. I knew I would be snowed in yet again for, at least, another week. However, I was determined I would make our meeting this time, even if I had to take a taxi.

While I waited for the snow to melt, Lynda connected with a few more people that I should meet with – or, at least, be introduced to – while at HealthTech on Friday. One such connection was sure to be Pauline Martin at NeuroMotion Physio, which provides the physio component of the PoNS clinical trial at the Surrey test site. Pauline and I went to high school together.

AND…Montel Williams was going to cut the ribbon on the neuroscience wing on Friday! I had to be there.

Friday morning I checked my email as I was getting ready and…Lynda was stranded in Merritt (in the interior of British Columbia) because the Coquihalla Highway (and every other highway into the Greater Vancouver area) were closed due to treacherous weather conditions. Seriously?!

After a flurry of emails, it was deemed that I should still go, and connect with Pauline and a Mike about a brain scanning device. And see what happens after that. My husband called a taxi for me; it was nice to escape house arrest for a while.

I met up with Pauline, who kindly gave me a brief tour of the shiny new space. Then I met with Mike and one of his colleagues to demo their brain scanning device, which, unfortunately, the sensors didn’t work through all of my hair – an issue that will surely be addressed in prototype tweaks. The end goal is to have a device that general practitioners – or, even, individuals themselves – can use to check their general brain health, much like monitoring blood pressure to check their heart health. I can see it becoming a craze similar to the FitBit. The more sophisticated professional device will be used to assess concussions and such; for example, to determine when a hockey player is well enough to return to the ice.

Going with the flow of the day, I enjoyed a nice lunch with people whose most names I do not remember. (Obviously I need to work on my memory skills!) Although I was not officially introduced to Montel Williams, I did sit at the same long boardroom table (in an impressive space) for lunch. I did chat with Dr. Ryan D’Arcy – a co-founder and senior scientist/entrepreneur for Health Tech Connex Inc., full Professor at Simon Fraser University, and a few other hats. Thank goodness for my iPad and Proloquo4Text.

Through our conversation, I learned that the latest version of the Magnetoencepalography (MEG) – initially developed by Hal Weinberg – was now located at Surrey Memorial Hospital. I had taken a psyc course with Professor Weinberg years ago at SFU. Can this day have any more “connect the dots” moments?!

I didn’t get to stay for the ribbon cutting as a taxi was called for me soon after lunch. I went with the flow. I did, however, leave an autographed copy of my book I’ll Do It Myself for Montel.

Results from the clinical trial with subjects with mild to moderate TBIs will be known in three months. Two other conditions – and very possible a third in a year – are slated for clinical trials using the PoNS. I am hesitant to name the three conditions at this point because I don’t know if it is public knowledge, yet. (Everything else shared here is available online.) It is suffice to say that I am extremely excited, both for myself and many of my friends and colleagues.

As I mentioned in an email to Lynda, I am not looking for a miraculous cure, to be walking straight and talking clearly. But, what if some improved functioning is possible? What if more controlled movement is possible? What if I could deliver a speech, using my iPad, without being so tense and jerky on stage? What if I could get through an average day without being totally exhausted?

What if…?

To keep up with my adventures, musings and insights, sign up to receive my future posts via email.

Welcome! And thank you for reading Emerging from the Cocoon of Silence: My Journey from Non-Verbal to Motivational Speaker. I hope you found it to be a worthwhile read. Please feel free to email me if you have any questions.
I have gathered these blog posts for your continued reading pleasure:

• The iPad as an Affordable Communicator: Initial Review
• The iPad: Cheap and Disruptive AAC?
• The iPad: A Cool Communicator on the Go
• Wanted: AAC Role Models
• Valuable Communication Lesson Learned While Sitting in the Dental Chair
• From a Speech Impairment to a Motivational Speaker: How Did I Get Here?
• Life with a Speech Impairment: A Toolbox of Communication Methods Required
• I Can Communicate, But Is My Voice Being Fully Heard?
• Daring to Follow a Dream Leads to Deliciously Ironic Employment

If you have enjoyed what you read, I invite you to sign up to receive my blog updates via email:

Back in high school, public speaking was definitely not on my list of top career choices. It ranked way down near the bottom with neurosurgery. Likewise, my top career options were also rather limited.

As you may know, I have cerebral palsy, which, for the most part, affects my balance, muscle coordination and speech. Back when I was searching for employment opportunities, entry level office positions – my only glimmer of possibility – required a minimum typing speed and the ability to answer the telephone. However, my left thumb – the only digit I can use for typing – did not meet expectations, and my unique Glenda-ish did not make the phone my best friend. I was disqualified from most positions before the conversation even got to my abilities, talents and interests.

I persevered and some time after completing my Bachelor of Arts degree from Simon Fraser University, I did land a part-time job at my alma mater, making the existing career mentor program accessible to students and alum with disabilities; a job I loved. When the project funding ended, so did my job.

After much searching, I could not find another employer willing to give me an opportunity to prove what I was capable of offering as an employee. Self-employment was my only option.

I competently completed any work opportunity that came my way: writing a literature review for a homelessness project, editing sermons for a pastor’s book, writing articles for various websites, maintaining a website for a non-profit arts organization. To me, those were survival jobs – equivalent to pumping gas and waiting tables – they put some food on the table, but not much more.

Gradually I built a solid reputation as a web accessibility consultant; making websites accessible to people with all kinds of disabilities. Web accessibility was an understandable career path for me and there is still much left to be done in the field but, after fourteen years, I felt so burnt out that if I had to explain the need for text descriptions of images one more time, I would stab my eyes out with a yellow HB pencil.

Advances in technology – namely, the iPad and the text-to-speech app Proloquo4Text – have enabled me to take my career in a bold new direction; one that was impossible, inconceivable back in high school. That of being a well-paid, internationally-known motivational speaker to inspire people who are silently screaming “There’s more to me!” and, yet, they are standing in their own way from moving forward.

In August, I traveled to Toronto for the honour and privilege of delivering the ISAAC 2016 Consumer Lecture as a plenary session at the International Society for Augmentative and Alternative Communication (ISAAC) Conference. I delivered Finding Your True Dream, The North Star for Your Life’s Journey – which has since become my signature talk – to approximately 600-800 people.

Here is a brief clip:

Being up there on the stage, sharing my story and the five elements of a dream, felt so right. This is what I am meant to do, where I am meant to be, at this point in my life. It is a destiny I fully accept and embrace, and an irony I savour as absolutely delicious.

Sometimes finding employment means daring to follow a dream, no matter what!

For more information about my signature talk Finding Your True Dream, The North Star for Your Life’s Journey, please download my speaker onesheet. Feel free to share with anyone you know who is looking for speakers for conferences or events. Thanks kindly.