Do It Myself Blog – Glenda Watson Hyatt

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!

Saturday afternoon found Darrell and I making an unplanned trip to the vet and having my Faith kitty sedated for x-rays and blood tests. The results indicate my furry baby has hyperthyroidism and early signs of kidney disease. Oh lovely!

Speaking with the vet about the test results yesterday, there are three ways to treat hyperthyroidism:

1. Medication: one pill twice a day for life, or
2. Surgery: to remove the thyroid, but might not get all of the gland if some is further down in the chest, or
3. Radiation: at a Vancouver clinic. From my crash course in feline hyperthyroidism on Sunday night, cats are then in isolation for two weeks. And, the procedure is expensive.

Leaving hyperthyroidism untreated, at least at this point, can lead to severe illness, kidney failure, seizures and such. Not something I want my cat to go through. Since the last two treatment options sound too drastic right now (I’d need to be sedated first!), that only leaves the medication route.

Now, Faith is a loving, purring, affectionate cat…with me…most of the time. I call her my puppy-cat. But, only when it’s on her terms. Other times, when she is scared or threatened, she lashes out…with all of how ever many claws she has! Getting her into her carrier to take to vet left my left hand looking like ground meat!

The thought of giving her a pill twice a day for the rest of her life (or mine!) was: Yeah, right! How the heck am I going to catch her, pry open her mouth, pop in a pill and make her swallow…twice a day…without looking like ground meat permanently? I love my cat dearly and will anything I can to give her a health and happy life, but let’s get real here!

The vet gave me twenty pills – one per day to start – to try to get into Faith any way I could. He was as skeptical as I was.

On the wheel home, I began doing what I do: creative problem solving. By the time we arrived home, I had an idea.

I still had several cans of giblets with gravy left from several weeks ago when I was trying Faith on different foods after learning the long trusted Purina brand is filled with crap and could be the reason why Faith had been sick and lethargic earlier this year. She didn’t like the giblets, but she loved the gravy! If I dissolved a pill in a tiny bit of water and then mixed it with the gravy, perhaps the medication would end up in Faith without me needing to lose a body part!

I gave it a shot. Faith licked the bowl clean, spitting out the giblets. In theory, the medicine was now in her! I tried again this morning, making sure yesterday’s success was a fluke. Again, Faith licked the bowl clean. Yes! Two for two!

Great. But, there’s not point buying canned cat food for only the gravy. What I need is kitty gravy made and then frozen in ice cube trays. Then I pop out a frozen cube, thaw and dissolve in a pill. Faith thinks she’s getting a treat while, really, she’s getting her medicine without me losing a limb. A brilliant idea, even I do say so myself!

Mom has volunteered to concoct a kitty gravy. (Thanks, Mom!)

Creative problem solving at its finest.

Hopefully, Faith will soon be back on track to being her healthy, playful self and that she will resume her Chief Feline Officer’s duties shortly.

I’ve been thinking about an earlier post in which I shared these 25 words about social media:

Social media gives voices to individuals marginalized and ignored by traditional media, enabling the world to hear these voices for the first time in history.

Some of the voices I have had the pleasure of hearing, which would not have been heard otherwise, include:

• Jenna Lumbardt’s story: Jenna is a young woman with autism and who is non-verbal. She shares her story via an email interview, which is then shared on a blog. When else in history would her own voice, in her own words, have been heard?
• Dave Hingsburger: I have had a professional crush on Dave since being involved with one project many moons ago. I read his blog when I need to hear another’s insight or the perspective of a fellow comrade in this daily battle for acceptance, accessibility and equality. This one video,  in which he shares his experience of witnessing abuse in an institution caring for people with disabilities, is particularly shocking and moving. Where in traditional media would you hear his powerful experiences and words without them being edited or spun a certain way?
• Tom Rogers: I first discovered Tom on YouTube. He’s a young kid who has cerebral palsy and shares his knowledge and expertise with computer technology via his webcam while laying the floor. He is now also blogging, doing reviews and sharing his opinions on technology. When else in history could a kid in a wheelchair share his passion for computers with a loyal audience? This young guy is going places!
• Ricky Buchanan: A still undiagnosed disability leaves her completely bedridden most days, yet she leads a very active life online. When else in history could an otherwise invisible (in the sense that she’s not out and about) member of society share her insights of living within four walls? (Watch for an interview with Ricky coming soon!)

This is quite an empowering time for many and, because these voices are now being heard, others are becoming enlightened and aware of people with disabilities.

I’d love to hear your thoughts. How has this shift in media and hearing (or being heard) for the first time these previously marginalized voices impacted you?

While writing yesterday’s post, I was going to leave it as “Perhaps the brain damage” and carry on. But then I chose to add “or brain injury” because some people now refer to cerebral palsy as a brain injury and I didn’t want to alienate or offend them by saying only brain damage – that wasn’t the point of the post.

But then it struck me in that moment. There’s a difference between damage and injury, perhaps only a slight one, but those two words do conjure up a difference in meaning, at least to me, in that moment.

Damage, for the the most part, occurs to a thing, an object, a good. Once damaged, a thing or object usually cannot be completely restored to its undamaged state. Damaged goods are typically devalued, discounted or discarded.

Whereas injury happens to living creatures; to birds, to animals, to people. Unless it’s a life-threatening injury, the person survives; perhaps not quite the same as before, but some parts or characteristics or qualities remain the same.

Defining cerebral palsy as permanent brain damage, which is always how it was explained to me and to those around me and is how I’ve seen it defined in countless sources, feels so heavy, so dooming, so damning. I began life damaged: devalued, discounted, and, by some, discarded. Where is the hope in that?

Instead, yesterday, by saying “permanent brain injury”, I felt that weight instantly lift. Yes, the injury is permanent. I’m not denying that fact. But the injury happened to parts of me; other parts of me, of my spirit, of my being remain uninjured, unharmed and intact. Those parts remain valuable and worthy.

It’s my cerebral palsy. I am the one who has to live with it every day, day in and day out. Therefore I am who gets to define it, and, today, I’m defining my cerebral palsy as a permanent brain injury. Brain damage be gone!

Granted none of us are born with the manuals included. We stumble and fall until we find our way. However there are a few things that would have been extremely helpful to know from the beginning rather than needing to discover through trial and error; mainly, error in many cases.

Therefore, in hopes of helping young ones living with cerebral palsy and their loved ones who may be saying “But no one told us that!”, I’d like to share these five insider secrets to living with my cerebral palsy:

1. Telling me to relax is pointless. When my body hears the words “Just relax”, a request is being made of it; a request requiring effort, which has the opposite effect. Telling me to “breathe” has a similar effect; after all, it was breathing – or lack thereof – that put me in this predicament in the first place!

Over the years I’ve realized that distraction works much better. There’s nothing like tricking one’s own body into doing what you want!

2. Wearing socks to bed keeps my toes from twitching. With athetoid cerebral palsy, one body or another is in constant motion. There’s nothing more exasperating than trying to fall asleep when the body won’t be still. I typically tuck my right hand, one of the usual offenders, under the pillow to hold it still. And, wearing socks to bed keep my toes and feet happy and relatively still.

Of course, this all changes on hot summer nights when my energy is totally zapped. Then, less covering is better.

3. Wearing a scarf wards off the gaggy feeling. I’ve only discovered this in the last couple of years. My theory is when my neck is cold, even if there’s only a slight breeze, the muscles tighten making me feel like I’m going to gag. Don a cozy scarf and the gagginess disappears.

I wished I had known back in university when I headed out on brisk mornings for 8:30 classes. I thought the gaggy feeling was from eating breakfast way too early. Had I only known!

4. Goodbyes are torturous. Ever since I can remember, goodbyes have been difficult, leaving me inconsolable tears. I don’t know why my reaction was always disproportionate to the situation, which was embarrassing and often landed me in trouble for being over-sensitive. I only know I dread goodbyes; my stomach even knots up the day before when I know a major goodbye is looming. This is one of the very few things that I really dislike about myself.

Talking with others with cerebral palsy and moms of kids with cp, over-emotional appears fairly common. Perhaps the brain damage or brain injury has also affected the emotion center as well as the motor cortex and whatever else?

The bottom line is, unless our parting is short and sweet, be prepared for some waterworks. I’ve yet to find a way to trick my body this one.

5. Living with cerebral palsy is a continuous process of exploration. What I have done a thousand times before might totally mess up the next time. Alternatively, what was seemingly impossible before becomes doable with new technology, new insights or “Damn it, I’m going to find a way to do it!” Add aging to the mix and it’s exploring all over again. Cerebral palsy keeps life interesting!