Blogging about a stroke – it’s not research, it’s therapy

 

 

 

 

 

 

 

 

 

 

 

Ever since I was turned down by researchers for Botox to the hands, I keep running into other ways I could be involved in stroke-related research.

I got a message on my blog wondering if I’d like share my blog with a study by Speech and Language Therapists doing a Masters project at City University London.

Is a bear Catholic?

“I am contacting you because we wish to analyse your blog in our theses. The name of the project is

Blogtalk: the impact of aphasia on people’s lives.”

Well have I got something to say about impact of aphasia on people’s lives. And it’s all right here in my book: What if you spend your whole life speaking and writing and woke up to find it was gone? (Special offer, limited time only, exclusive for readers of this blog – £9.99 plus postage of £4.95, call it £15 quid)

Seriously, there is no charge, as you know if you’ve been following my misadventures. But it illustrates how such an event will take away even the ability to earn money. And that’s just the beginning.

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.

A show of hands for all those turned down for medical research

I got an email from the researchers saying I’m not medical research material.

“I saw the consultant yesterday afternoon and we had a look at the video together. Whilst you are able to complete the grasp release task, we cannot see any evidence of abnormal movement that would indicate you have the level of spasticity needed to fulfil the trial criteria. It would not be beneficial to give someone botulinum toxin injections if there is no clear spasticity as these injections weaken muscles and so would just make your hand weaker if not given appropriately.”

So, no Botox for me then. The reason  I volunteered for medical research was this press release  from The Spasticity Service at the National Hospital for Neurology & Neurosurgery in London:

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. It takes me a couple of hours to type a blog entry, some of which is copy editing because I tend to leave out the little words. But that’s the brain which I have to re-train. The right side of my body needs something:

“Unfortunately, we therefore won’t be able to recruit you to the study. I would, however, recommend that you pursue getting a few physio sessions from a neuro physiotherapist as mentioned in your email. A neuro physio would be able to offer you some help with improving the way in which you use your hand and arm and with advising on specific things that you can focus on practicing independently.”

Now I’ve got to find a neuro physio.

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.

Psst! Wanna see pictures of something really strange?

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.

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

Guess who had a stroke

A funny thing happened today - Thursday, 10 January 2013 – BBC’s Andrew Marr had a stroke.

Not funny ha-ha, but strange funny because the news of that stroke set the whole stroke network into a frenzy of action.

Twitter was a-tweat with the news.

The Stroke Association came up with a statement:

The BBC broadcaster Andrew Marr, who presents Radio 4′s Start the Week and the Andrew Marr Show on BBC1 has had a stroke. He was taken ill on Tuesday 9 January and is now in hospital and doctors say he is responding well to treatment.

Joe Korner, Director of Communications at the Stroke Association says;

“We are deeply saddened to hear about Andrew Marr’s stroke and our thoughts are with him and his family at this hard time. Around 150,000 people have a stroke every year in the UK and around a quarter of these are in people of working age. A stroke happens in an instant but the effects can often last a lifetime. However with the right care and support it is possible to make a recovery and return to a life after stroke. If anyone is worried or concerned about stroke please call the stroke Helpline on 0303 3033 100.”

But I was impressed with Kate Allatt’s response. She started Fighting Strokes – Young & Locked in Syndrome charity and blogs on the subject.

With Kate Allat, a stroke survivor, she has news you can use, not statistics.

-          #ANDREWMARR LISTEN TO THE WHOLE STROKE DEBATE ON VANESSA FELTS 10/01/2013 at 22 mins onwards…

 -          Saving #AndrewMarr – My top 8 stroke recovery tips.. 

And the same with Joan Scott (Previously:Teen Agony Aunt for AOLUK. Community Manager and Internet Safety Advisor) who has a daughter who had a stroke and recently had a stroke herself. She, too, offered down to earth stuff in fact she appeared to have the news first – EXCLUSIVE, as the newspapers put it: 

- It’s funny how people make jokes about strokes, but never about cancer. Well, not funny really but you know what I mean.

- I keep telling people I’m a survivor. I refuse to be a victim. It’s taken away enough without that!

- I wonder if Andrew Marr is on the geriatric ward, like 18 year old Sarah was. Not a nice experience, even though we love the #NHS

Me? I offered this:

All of a sudden the morning news is filled with news about stroke. Oh. It’s because we recognise who it got.

Other charities, “celebrities” and just plain people chimed in with support and wishes as Twitter became a fence post for people leave their tributes and wishes for a speedy recovery.

All the emotional effort went in Andrew Marr’s corner, although there was another stroke story on the wires. I tweeted about a BBC death –

“Waiting for another statement on stroke. Nothing about this BBC man, Alasdair Milne and his stroke.”

And there was a stroke-related story about drinking four cups of tea helping to slash the risk of stroke.

Save for one death,  it was a good day for stroke news.

I’ll put the kettle on.