I always talk, think and write about being back to normal. After a stroke, that’s what a fella wants. Normal = good. You want to blend in. At least for me, there’s still a fear that somebody will notice a slight hesitation in my speech or catch me struggling to retrieve a memory. If a regular Joe or Jane forgets a name it’s just a sign of a busy life. If someone whose brain has been sizzled does the same, could it be a sign that they aren’t firing on all cylinders? Are they damaged goods? Are they capable? Do they require pity? Arggg! I imagine it’s much the same for folks who’ve suffered other assaults on their minds. The fact is though, that you’re never the same after your brain has been blitzkrieged. The difference can be in how you feel, how you function or both. It doesn’t mean that you’re not capable. But it might mean that you need some help or tools to do what you used to do. Imagine if a mind like Stephen Hawking’s was trapped inside his disability? What if he was born in a time and place where sharing his mind with the world wasn’t possible? Or if his part of the world had been cut off from the possibilities that helped set his brain free? I fear that that could be happening today. I’m actually pretty sure that it is. I’m certainly not in Hawking’s league. But whatever I have to offer would be largely muted without the help of technology. As I’ve written before, even the healed Tim Seefeldt’s reading speed is just over 50 words per minute. An average person reads at between 150 and 190 words per minute. You can’t do the work I’ve done through my career without being able to read and write. And, you sure can’t write without being able to read. Or to find a cheat. It doesn’t take a mind like Hawking’s to figure out that I’d be up the creek without a little help. More than a little. My equalizer is software originally designed for kids with learning disabilities called WordQ. WordQ literally allows me to keep up to the rest of you in reading the reams of material that comes across my computer each day. It allows me to edit my own writing to make sure that it’s up to snuff. I use it to edit and review everything I spit out, with the exception of very short emails. Bottom line is, without it, I don’t make a living the way I’ve been trained to make a living and I’m in a spot of bother when it comes to paying the bills. And, there’s no book (BTW, agents/publishers I’m still waiting to hear from you!) and there’s no blog. Beyond the practical, a large part of me would be gone without being able to write. Technology is a game changer for many of us in regular day to day life. And it can be especially critical for those of us who’ve suffered a few bumps along the way. It’s not just high tech tools that can help heal damage and improve brain function for the unbroken, either. I’d also like to be a clearing house of ideas for stuff that’s working for folks whether it’s some form of physical exercise or meditation. Personally, I wouldn’t have gotten anywhere without the spiritual piece. And today, a big part of my day to day is yoga. My downward facing dog looks more like a rat, but it’s helped me a lot, from shoulders to toes and between the ears. The thing is, there’s so much out there and things change so quickly that it’s virtually impossible to keep up to speed without help. And to separate the good, the bad and the ugly. So, in that spirit, here are a few things readers have mentioned. What do you think? Some American readers have noted the work done by Bioness Inc. Their electrical stimulation devices are being used to help people with arm and leg mobility issues. Their stuff is aimed at helping folks with foot drop or hand paralysis as a result of stroke, multiple sclerosis, traumatic brain injury, incomplete spinal cord injury or cerebral palsy. I’d love to hear from more folks who’ve used this and to see if there are other tools targeting these issues. I’ve also heard from readers who’ve read about potential benefits of hyperbaric oxygen therapy for those suffering ischaemic strokes. This one’s right out of left field for me. Are there any professional readers who can shed some light? Let’s try to work as a clearing house of sorts for some of the stuff that’s out there for stroke survivors and those suffering other brain trauma. Also for brain health. The way I understand it, it’s never too late to start trying to make the ole ticker work better. As well, the thinking that the clock was ticking after a stroke and that you could only make improvements within a short window of time is now, I believe, considered bunk. I’ll be waiting to hear from you. Meantime, I’m also waiting to hear from a concussion expert. I’m expecting some pretty interesting stuff to share with you on this front soon. -30-
It’s been a couple of weeks since my last blog, but I’m back with a different state of mind.
Some travel set me behind. Then, interviews I was planning for a few posts on concussions were delayed. I didn’t want to just tell my story all of the time. I felt I’d hit a wall. And it was compounded by that personal issue I wrote about a few blogs back.
Then I got an email from fellow ex-reporter, Ron, that set my mind right.
Ron’s wife had a stroke 18 months ago. He’s by her side at their home just outside of Charlotte, North Carolina. Ron read about my story while doing some research on the National Stroke Association’s website (http://www.stroke.org/) where I’d posted a piece on their ‘faces of stroke’ page. He tracked me down. Reporters, even us ex-reporters, are good at this stuff. Now two ex-newspaper guys — one from the South Eastern US and one from Western Canada – were connected.
Reporters — again, even us ex-reporters — are also good at asking questions. And in his emails to me, Ron asked a lot of good questions about life after stroke and support, tools and the like that are out there for recovery. He made some excellent points, like the ‘facts’ on the time after stroke that a person can still make gains seems to be greater than the experts used to think.
I realized from his questions that I’d forgotten one important thing about my recovery. As much as we now know about stroke, we’re still at the early stages of understanding the brain. New ideas are being floated every day. And advances and aids for stroke victims – and those suffering other brain conditions and injuries – are being made and discovered all of the time. And it’s happening all around the world. The point is, if you suffer a stroke or a brain injury in Vancouver or Miami or anywhere in between, all of the brain power you’ll need to help you isn’t sitting in a neat package in one convenient spot. You’ve got to do some digging.
As I’ve written, I had amazing care in Edmonton. And still, I learned about the reading feature in the Amazon Kindle through a speech language pathologist I connected with in Chicago. In our conversation, I told her how I was getting books from the library, then finding the same book on CD. I’d play the CD while following the words in the book. As I’ve said in earlier blogs, I can ‘read’ along with words being read out loud at normal speed, but I slow down dramatically when the recorded voice is shut off. Letter combinations don’t immediately appear to me as they do to you. But they do when I hear the word along with seeing it. Weird, I know. At first I used this technique to speed up my reading. I seem to have hit a wall with speed, so now I need help just to keep up with the rest of you and not spend a frustrating month reading a short book.
The Chicago speech language pathologist asked me why I didn’t just get a Kindle, which has a feature where a computerized voice reads out loud, allowing me to follow. I’d not heard of this before. What a breakthrough that was for me.
I also craved having someone like me to confab with who understood exactly what I was going through with my lost words. Nobody I met or heard about had my reading issues. Then, by chance, I spotted a documentary featuring Oliver Sacks, the UK born, American based writer/neurologist who suffers a unique brain issue himself. The special talked about a Canadian novelist who had a stroke and lost the ability to read. His circumstances were different, but still. I tracked Howard Engel down and had some great, helpful and inspiring telephone conversations with him.
These were watershed moments for me. Colossal breakthroughs, huge inspiration.
Ron reminded me that I can use this blog to help spark some breakthroughs for others who’ve suffered stroke and brain injuries. To provide a voice for those who’ve come up with devices, tools and techniques to help with brain function and improvement. Whether it’s help for those of us who’ve been buzzed or those trying to fight off decay.
So, please, reach out to me with what you know and what you have. Share research you’re working on or have heard/read about. I’ll share them in this blog. I’ll dig into them and do some old fashioned reporting on them. I’ll spiderwep from your ideas and tips and dig up more exciting and helpful stuff.
Ron’s already started me with some great ideas you’ll read about soon.