A miracle for Mr Hockey?


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Back when ice hockey was new to the American South in 1973-ish, with Atlanta (Flames) and Houston (Aeros) getting teams involving the sport on ice, I had this idea for a feature magazine story.

I could tell the story of the sporting franchises trying to make inroads in cultures where  ice was something to put in their mint juleps, and a puck was someone in Willie Shakespeare’s  A Midsummer Night’s Dream.

Maybe hockey would even come to New Orleans, where I was based, so I could get in on the fan action. (As a former player, the closest I could get to ice was the annual Holiday On Ice show that came to town every few years, set up a temporary rink and allowed Yankees like me to skate early Sunday mornings)

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I would get an interview with the Houston Aeros star player, Gordie Howe, who had been lured out National Hockey League retirement in his mid-40’s to play with the World Hockey Association. Maybe it had something to with playing with two sons, Mark and Marty. He was, after all, Mr Hockey, already a member of NHL Hall of Fame, and the namesake of the Gordie Howe Hat Trick – scoring a goal, an assist, and involved in a fight during one game.

I contacted the Houston Aeros, outlined my story, and they agreed to let me interview Gordie after a game. Like an addict too long from his drug, I was overdosed with images/sounds/smells from the game, when I walked into the locker room to find Mr Hockey straight out of the showers, glistening in his birthday suit. I remember being overwhelmed with the Adonis-like figure (in a non-rainbow way), and saying to myself:  I hope look that good when I’m 45.

Fast forward now through 41 years and you’ll find that Gordie and I have both had strokes, with his making news.

His stroke, according to his family, left him unable to walk or speak. He was described as ‘catatonic.’

They had mentally prepared for the end; his funeral, the eulogies, the things that are left unsaid, but you’re aware of.

That was the beginning of December of 2014. Fortunately the youngest of Gordie’s sons is a doctor and he saw some literature about a treatment in Mexico involving stem cells.

Now you’d think that with all that doctor training would produce some real-life scientific scepticism, but Dr  Murray Howe arranged to have Mr Hockey transported to Tijuana and get the treatment. And then:

“At Tijuana medical clinic where, on Dec. 8, the elder Howe sat straight up in bed just hours after an injection of about 100 million stem cells and demanded with an astonishingly strong voice that he needed to use the restroom, Murray Howe said.

“He says, ‘I’ll walk,’ and I said, ‘You can’t walk,’ ” Murray Howe recalled. “He says, ‘The hell I can’t.’ And he sits up and puts his feet over the side of the bed and stood up.

“If I hadn’t been there and seen that happen with my dad, I don’t know if I’d believe it either.”

Detroit  Free Press

There are people who don’t believe it, scientists who say with bravado, indignant spittle (because Science is on their side), this story is creating a false hope and raising hope for snake oil salesmen.

So the debate continues.

Can stem cells help cure the affects of stroke?

Or is it bunkum? You can’t fool Science.

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I would gladly try anything to be able to speak again. And if it’s good for Mr Hockey, it’s good for me. He managed at age 86 to score one-third of a Gordie Howe Hat Trick – a fight with stroke (which he won), without taking a penalty.

One final note about hockey as a sport:

aaaaaownload

 

The new Redoable


http://redoable.co.uk

Redoable construction crew

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.

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

Aphasia: Not with a mouse, not with a fox


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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 Arthurarthur to stay overnight and I found that he was entertained by my reading Green Eggs and Ham, by Dr Seuss.

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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


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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.

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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.Should-Animals-Be-Used-For-Medical-Research

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.

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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

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)

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.

Psst! Wanna see pictures of something really strange?


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Not the picture above – this is a teaser, and besides it’s my left arm.
A strange thing happened to my right arm. In the quest to become a medical guinea pig, I was involved in a photo shoot involving my right arm that has been less than functioning since a stroke three years ago.
I suppose it was an audition. The email from the Research Physiotherapist And Study co-ordinator for PrOMBiS (Predicting Outcome and Measuring Benefit from botulinum toxin in Stroke “A new trial investigating active functional gain for botulinum toxin to the upper limb after stroke”) put it like this:
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.

That required a video. Now, for someone who has made living out of videos, somehow the knowledge processing it left me, probably because of the latent effects of that pesky stroke. So I had to research and remember the process of getting a video into a format that could be emailed. Gone were the accoutrements of Adobe Premiere Pro or Avid on the computers designed to handle them. And I once knew the scribblings that AVI, VOB, MP4, DVD, WMV, 3GP, MOV, MKV, H.263/H.264 meant.
But I couldn’t attach it an email. So in desperation I put it on Youtube and sent the link to from the Research Physiotherapist And Study co-ordinator for PrOMBiS (Predicting Outcome and Measuring Benefit from botulinum toxin in Stroke “A new trial investigating active functional gain for botulinum toxin to the upper limb after stroke”).
Nothing back yet. This is the video.
What are the chances that this anonymous video will suddenly go viral with millions hits sending millions of pounds in advertising revenue to me? In that I case I will fund my own study so that others can get a chance of some of normalcy returning to their life. I call the video Different Strokes. Could be as big as the Harlem Shake.
Returning to reality, I still have more to do:
If, from this video, we think you would be able to do the grasp release component of the trial assessments, we would still need to assess the kind of tone you have in your wrist and fingers. This is a “hands on” assessment, which would need to be carried out by someone who is familiar with assessing tone, for example, a neuro physiotherapist.
The last time I had a physiotherapist I was hauled up on terrorist charges. A nurse asked me what my purpose was in this building. And as I was in the early stages of aphasia, I couldn’t explain I was there for a physiotherapist appointment. She proceeded to tell me in my silence why they had security in this building and I should be signed in with a guard because they didn’t let anyone in off the streets. (There was no place to sign in, nor was there a guard)
The Florence Nightingale dropout was so strident that I just left. The physiotherapist came in few minutes and explained for me. I complained to the NHS and they told me she had to go to empathy classes and they were very sorry.
That was my last physiotherapist appointment. Now I guess I’ll have to go back and see if there’s a place to sign in and see if empathy classes really work after two years. I can always carry the hulk hand in case it doesn’t.

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