I’m proposing a new word for 2014

Please go to my new site http://redoable.co.uk

for the entire story!

more at http://redoable.co.uk

I invented this word purely to get in the face of the originators of the word “selfie,” because the word I’m proposing doesn’t have the narcissism, self-absorption and ego.

“Selfies” originators  were then egged-on by the Oxford English Dictionary which made “selfie” the “word of the year for  2013″ which only celebrated the vacuous planet of celebrity and party-goers and its St Elmo’s fire of notoriety and does nothing to further the English language. Some forms of “Selfies” can be dangerous as people now use their mobiles/cell phones as a new form of mirror with which to measure their form of reality.

The word I’m proposing is shadowies – a picture of your shadow in various poses that leaves the “me” out of the photograph, allowing only the essence of you. It’s similar to Victorian silhouettes but with more scope for artistry all without worrying about combing your hair, or even what you wearing, or make-up, or skin imperfections.

Dependent on how the light strikes you, you can be tall or short, thin or thin-challenged. It’s the perfect anonymous portrait. You don’t have your silly duck-faced photos living on in internet eternity.

Go back into the shadows and lose yourself in the anonymity.

Here are some I took earlier.

The new Redoable

http://redoable.co.uk

Redoable construction crew

This is the new and improved site – a gift from my Amoret. There still will be the exact same postings on here as on the new site – mirrored if you will. But the new site is awesome. Please, sign up for the site http://redoable.co.uk if you are one of my subscribers.

 

 

Aphasia

After month of induced aphasia awareness (as ordered by the US Congress) I’m convinced I am never going to be cured of aphasia.  It leaves me feeling like this Eric Johanssen photo.

thank you facefistcopyright-2011-erik-johansson-all-rights-reserved.jpg

Aphasia: Not with a mouse, not with a fox

June being the month for all people to be aware of the condition known as aphasia (as ordered by the US Congress) I find that I’m getting worse, not better.

I wrote earlier about being exposed to the term asphasia (The Chronicles of Aphasia – How I discovered aphasia when all I had was trouble speaking because of a stroke).

Frankly it’s a big job touting the world for people to understand the term and the condition that has so many variables. The best example is the mantra that aphasia is a loss of language, not a loss of intellect.

I keep telling myself that, yet day by day, I can feel what little communications I have slipping away. I find it harder and harder to pronounce words – to ‘mouth’ words – get my tongue around them and get them out. I used to have problems thinking of the words, but that’s better. Given time I can find the words I need.

I have had three years of practice to build on the fried brain residue, to practice getting better, only to find it’s getting worse. Once again, the experts lied when they said I would improve my speech by putting in the hours of rehab. And yet “scientists” say the brain re-wires itself given time and exercise. Mine, apparently, hasn’t caught up with science.

But still I haven’t given up. Recently I had my grandson Arthur to stay overnight and I found that he was entertained by my reading Green Eggs and Ham, by Dr Seuss.

I remember reading the story to my daughter Katie (long ago, Before Stroke) and she loved it when I went fast, increasing the frustration and mild anger through the words to the ever-present question posed by Sam-I-Am:

I do not like them in a box.
I do not like them with a fox
I do not like them in a house
I do not like them with a mouse
I do not like them here or there.
I do not like them anywhere.
I do not like green eggs and ham.
I do not like them, Sam-I-am.

(And I maintain that I’ve not lost my intellect.)

I sailed through the words, Post Stroke. In fact I was so enamoured by my voice during the chorus, I got louder and louder (I was really getting into the method acting), that Amoret shushed me from the patio lest the neighbours the other side of the brick wall think we were arguing.

The neighbours, Mr and Mrs Homo Neanderthalensis, never let on that I would not have it with mouse or a fox, nor Amoret’s strange recipes.

Truthfully, I was knocked back by the admonition.

I was really feeling the power of my voice. For the first time I felt free of the tyranny of aphasia.

Thinking about that reading again, it wasn’t that the pronunciation was all that clear (I have aphasia remember), but the timbre, pitch (psychoacoustics) and cadence gave me freedom to wildly express myself much the same as Brian Blessed.

And Arthur was impressed.

I plan to read more Seuss, aloud, much the same way I did when began this rehabilitation. I hope to get that feeling of freedom of communication back – and who cares what the neighbours think.

I’m putting my brain to work in search of a cure for fatigue

I got the why’s of a stroke affecting the brain and cutting off signals to the right side of my body – there’s a lot of learning to do after a stroke. But I thought you could, over time, rewire the brain – train it to do the same things it used to.

Or least that’s what I was told: “You’ll be back ‘normal’ after some rehab” from nurses and physios and consultants. It’s a litany people who have strokes are told. They are all lies – well-intentioned lies, but lies all the same.

Like I said at the beginning of this blog adventure, strokes are a bespoke affliction – it’s a one-off designed just for you. It’s kind of like ordering from a Chinese restaurant in that you can one from column A, and three from column B, or the other way around, or different amounts. Not that you have much of a choice during a stroke – the end result depends on how many brain cells die during a stroke from not getting life-sustaining oxygen. That result is your Chinese takeaway order. It includes death.

Coming up on year three of stroke in my life and I have made some progress with what I got in my takeaway order. I can walk a straight line, and pick up a cup, and get dressed, and chop vegetables, and sort of type now (look at me blogging!). But it’s a far cry from ‘normal’. I think that’s why I’m suddenly interested in research. I think it will somehow speed up the recovery, or the very least come up with a reasonable explanation of why it is not.

I yearn for the normalcy that I used to have – to type out a story at warp speed; to drive; to speak normally; to know a day without fatigue or tiredness.

They are looking for stroke survivors to take part in research on fatigue and tiredness. That sounds like my kind of research.

I can tell them about that. Since my stroke I have to take a nap about noon every day. About then I look like an extra in The Walking Dead (Zombie TV series) I am that tired. I sleep for about an hour and that revives me.

BS (Before Stroke) I would never entertain the thought of a nap as it would take valuable awake time (read creative time – photography, writing) from me. And BS, should I ever fall asleep accidentally from just being exhausted, I was a bear to be around. Now a power nap is essential to my post-stroke rehab. I shall apply for that research and they tell me:

“The reason behind development of fatigue is not clear but previous research suggests that it could be due to changes within the areas of brain that control movement. In this study, we use brain stimulation, questionnaires and brain scans to gain information about the area in the brain that contribute to development of fatigue following a stroke.”

Put my brain in coach, even if it won’t cure me.

Frozen in mid-word – how the cold weather works against you when you have aphasia

 

We’re getting the last blast of winter on the second day of spring. Snow storms, high winds and sub-zero temperatures, which isn’t good for my aphasia.

How does the weather affect your ability to speak? Frozen lips, that’s how.

Since my stroke almost three years ago destroyed a part of my brain, the communication part, leaving me similar to sounding as if I’m trying to talk with a mouthful of porridge while being strangled. Call it aphasia – everybody with a scientific mind does.

To talk, I find that I have to get my lips around the beginning sound of a word, completing one word, and the next one until I have a sentence. That’s normal for me with this aphasia gagging me. It’s even more frustrating because sometimes I have to stop to search my vocabulary for the right word, but then I find that I fall back on a synonym because it’s easier.

Inside my brain there’s a mis-connection

Well this kind of weather means my lips get frozen which makes it harder to find even the beginning of a word.

The reason I come out in this blizzard? Me and the dogs.

Amoret, some of dogs, and me (photographer)

I have to take my dogs on a daily walk – me too, to stay in shape. It’s rehabilitation.

Since when does reality speak a foreign language?

Since having a stroke 2 ½ years ago I find I am constantly reminding myself of reality.

You know, the real reality, not just what you think it is.

Take the other day: I turned on the TV to catch up on the news, and what my brain-damaged mind heard was pure gobbeldy-gook. I could not make sense of what they were saying, things like: Penawdau newyddion a’r tywydd.

I wondered whether I was having another stroke.

But the real reality was I had mis-dialled the number on the remote and came up with S4C Welsh television.

Not long after that, I saw this from the BBC:
“Stroke sees Englishman wake up speaking Welsh – An 81-year-old man from Somerset who had a stroke woke up speaking Welsh”

Not everyone understands this reality of strokes.

Read about this picture at: http://www.ancient-hebrew.org/19_gonewrong.html

Redoable – 2012 in review

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

600 people reached the top of Mt. Everest in 2012. This blog got about 9,200 views in 2012. If every person who reached the top of Mt. Everest viewed this blog, it would have taken 15 years to get that many views.

Click here to see the complete report.

In which I volunteer for medical research – hit me with the Botox Doc

http://www.chalkboardmanifesto.com

I keep up with science-related research through press releases and general news which was pretty much my last job at The Open University communications department, and before that, a career as a journalist and now as stroke survivor blogger.

In the daily trawls I came upon this:

New research shows that repeated treatments of Botox (botulinum toxin type A) over one year after a stroke can improve muscle tone and reduce pain in the arms and hands, making it easier for patients to dress themselves.

I read it as: miracle cure will help you type better than hen-pecking at the keyboard mostly with your left hand because your right is stroke-affected.

So I’ve volunteered for medical research.

I emailed The Spasticity Service at the National Hospital for Neurology & Neurosurgery in London. A few days later a nice woman named Luci responded with this:

Thank you for getting in touch with us and for your interest in our study, which is investigating the effects of botulinum toxin injections to the hand and arm. I appreciate that it took you a long time to write your email.  

I attach a copy of our patient information sheet which goes into quite a lot of detail about what would be involved if you were eligible to take part in this study. This is a fairly long document (10 pages or so), so if you would prefer a paper copy, let me know your address and I will post one out to you.  

Because this is a research study, we can only recruit a specific group of people. There are 2 main things that would help us to decide if you are eligible to take part: 

1. You would need to be      able to hold a glass in your affected hand (you can put it in there with      help from your other hand), to lift it up and place it on the table      (without help from your other hand), and then to let it go. It doesn’t      matter if letting go is very slow or difficult, or if you need to drag      your hand off the glass, but you do need to be able to let go WITHOUT help      from your other hand.
2. We are looking for      people with a specific kind of stiffness, also called spasticity, in the      hand and fingers. This is because the injections will only work on this      kind of stiffness.

I wrote back saying: I can do that; put me in the game coach. Then Luci replied:

From what you say in your email you may be potentially eligible.  

However, we are getting a lot of enquiries about our study from people who, like you, live quite a long way from London. You have raised concerns about this yourself in your email. We need to consider how practicable it would be for people who live a long way away to undertake all the travel that would be required to attend all the trial appointments. We have found that participants do get quite tired as the sessions can be fairly intense. This does not mean that you would not be able to take part, but once we have ascertained who may be potentially eligible, we need to discuss who would be most appropriate for our study, how far they would need to travel and whether we would be able to help with travel costs.  

Once we have done this I will get back in touch with you to let you know what the position is.

I’m waiting.

Footnote:

I worked with a guy named Neil at the OU who was super-fast at typing – it sounded like maybe 100 words a minute – at least I thought so.

It wasn’t until I walked past his desk that I noticed he only typed with his left hand, not because of any disability, he just preferred it that way.

Would that I could.

Great-grandmother De La Foret slapped my tendency to be left-hand out of me when I was two.

Be careful what you say around the children

My 4-year-old grandson Baxter, with whom I’ve shared many a deep conversation on life, has asked his Nana:

“What’s the matter with Granddad.”

As he learns more about the complexities of language, he finally noticed something was wrong with my stroke-addled speech. And so the last bastion of normal conversation with Baxter, for me at least, had ended.

The effect of a stroke now had one more victim, and then future conversations between us will be tainted with his knowledge that I don’t speak properly.

I have one recourse for continuing unbridled conversation – my other grandson, Arthur, is almost two, and is just forming his first sentences.

He needs someone to talk to.

And so do I.

-30-

Connected reading: