Do It Myself Blog – Glenda Watson Hyatt

Motivational Speaker

Neuroplasticity: What If Brain Damage Need Not Be Permanent?

Filed under: Living with a disability — by at 8:57 pm on Tuesday, February 14, 2017

Montel Williams at the HealthTech Innovation Hub

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.

Glenda speaking on stageAs 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…?

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Daring to Follow a Dream Leads to Deliciously Ironic Employment

Filed under: Living with a disability — by at 2:48 pm on Monday, October 31, 2016

Glenda speaking on stage, with the text "I AM a speaker, no matter what!" superimposed on photo

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.

If you enjoyed this post, consider buying me a chai tea latte. Thanks kindly.

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Move Over Scissors, The Nimble is Cutting It!

Filed under: Living with a disability — by at 7:21 pm on Monday, April 18, 2016

A pair of scissors and a NimbleMore often than not, using scissors when left-handed is frustrating. The scissors tend to fold paper, rather than cut it. Add in limited hand function due to cerebral palsy and some tasks, like opening a plastic package, leaves me screwed.

Enter the Nimble – a cutting tool that slips over the fingertip.

When I was given the opportunity to try one, I said, “Yes, please!” (In the spirit of full disclosure, this is, in essence, a sponsored review, in that I did received one Nimble for free.)

Nimble on Glenda's forefinger

Right out of the envelope, I was able to use the small gadget to open the enclosed packages of the sweets.

Since then I have been using the “1 finger cutting tool” to open packets in the kitchen every day. And I am constantly finding new uses for it.

The actual cutting bit is like the very tip of a cat claw. Because it is so small, there is no (or, a minuscule) chance of cutting myself. Yet, it will cut what I need cutting: paper, plastic, cellophane, foil, tape, and such.

I am looking forward to packing the Nimble in my bag when I head off to Toronto this summer. Scissors aren’t permitted through airport security, but this small cutting tool will likely get through without a second glance. Opening the hotel’s tiny soap bars will no longer be a hassle!

The creator Simon Lyons and his company VERSION 22 are running a Kickstarter campaign to raise funds to get the Nimble into production. If you feel so inclined, please check out the Nimble’s Kickstarter campaign.

I am eager to having Nmbles in several places throughout my home so that one is always handy when I need it!

If you enjoyed this post, consider buying me a chai tea latte. Thanks kindly.

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Optometrist Scores Average on Eye Exam, Patient Enlightens Once Again

Filed under: Living with a disability — by at 5:53 pm on Monday, January 18, 2016

Reading glasses set beside Don Miguel Ruiz's The Four AgreementsWith headaches so painful I felt like I would puke, an optometrist appointment was reluctantly made.

Reluctantly because my last appointment three years ago left me feeling devalued and depleted, and took all of my inner strength not to burst into tears.

This feeling had nothing to do with the condition of my eyes, but, rather, the ill-prepared, unenlightened way the optometrist communicated with me and my jerky, constantly moving, speech impaired body.

After that disastrous appointment, I wrote an letter to the optometrist and hand delivered it to the office. Even though I requested that the letter be placed in my file for next time, in preparation for this latest appointment I printed a copy to give to the next optometrist.

I was somewhat hesitant to hand the letter to the new-to-me optometrist because I didn’t want to assume he was as unenlightened as the previous doctor. I then realized the exam would have more of a chance of going smoothly if I gave him a fair chance to succeed. I handed him the letter.

Twitter: @GlendaWH

October 19, 2012

Dear Optometrist:

After my eye exam on Monday, October 15th, I left the office feeling devalued and depleted. I am hoping by sharing the following information, the next exam will go smoother for both of us.

As you might know, I have athetoid cerebral palsy. For me, this means I lack muscle control and coordination. My physical movements are jerky and involuntary; one body part or another is in constant motion. My speech is also significantly impaired, yet can be understood by individuals who take the time to listen.

However, my hearing, understanding and cognition are not affected. There is no need to speak loudly, to repeat yourself or to use simple vocabulary for me to comprehend.

Next time I will grab my iPad from my scooter basket before my scooter is moved out of the way so that I have a more effective means of communication at hand.

My head control is tenuous at times. When conducting the eye pressure test and other such tests during which my head must remain still in a certain position, it might be helpful to have someone hold my head steady.

My eyes closing when something is approaching is a strong, uncontrollable reflex. Repeatedly stating that I need to open my eyes for the eye drops is not productive. Perhaps another method can be found to achieve the same result.

Please keep this letter in my file so that it will be handy for my next appointment.

Perhaps in that time you could consult with colleagues and other optometrists for further suggestions on how to best serve patients with cerebral palsy and other neurological disorders.

Working together will ensure successful care for my vision.

Glenda Watson Hyatt

The optometrist read the letter, thanked me for the information and proceeded with examining my eyes. He was extremely patient when my head twitched like a bobblehead that had just  downed a few cups of espresso.

However, perhaps “…my hearing, understanding and cognition are not affected” was not written clearly enough in the letter as he made a great effort to gesture while he was talking. He went as far as to write “2012” on a small Post-It note when he asked if my last glasses were in 2012.

In Don Miguel Ruiz’s The Four Agreements, the third agreement is: "Don’t make assumptions."

Don’t assume that I do not hear or do not understand because my speech is unclear or because I may communicate in another manner.

Making that assumption really does say more about you than it says about me. And, honestly, it does not portray you in your best light.

Asking me, ”Can you hear and understand me okay? Is there anything else I need to do when communicating with you?” would portray you in a much more enlightened light.

On the bright side, this optometrist would make a fantastic partner while playing Charades.

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No One Speaks for Me!: Accessibility Must Include Communication Access

Filed under: Living with a disability — by at 5:07 pm on Tuesday, June 2, 2015

Even doctors have dismissed my ability to communicate. One specialist went as far as to tell me that he would ask me questions, but he expected my husband Darrell to respond because “it would be faster.” I was shocked! No one speaks for me on something as important as my health simply because it is more convenient for them.

I shared this story during last week’s CBC Radio interview, in which Communication Disabilities Access Canada’s Executive Director Barbara Collier and I, in my role as CDAC’s Social Media Coordinator, briefly discussed communication access for individuals with speech and language disabilities.

Here’s the interview audio as a YouTube video – a clever way to have the audio transcribed, even if it it isn’t quite perfect.

For more CBC coverage: Speech and language disabilities ‘need more support’ in British Columbia

Many resources for individuals with speech and language disabilities and on how to best serve us are available from CDAC’s project Communication Access Now.

Donning my Social Media Coordinator hat for a moment, I invite you to Like CDAC on Facebook and to follow @CommAccessNow on Twitter. That is where I am spending a fair bit of time these days.

If you enjoyed this post, consider buying me a chai tea latte. Thanks kindly.

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