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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3 responses to “Psst! Wanna see pictures of something really strange?

  1. Which country? It is available in Australia, and I was accepted for my left hand here in Tasmania ( the beautiful island state at the bottom of the map (although it’s often left off! )My left foot is really what I’d like to have worked on with its toes curled under tightly when I stand up or do anything with my working right side). Apparantly our national health system will only fund botox for the upper limb if you’ve had a stroke. Such discrimination. Sadly, my pre and post 6 week trying to do exercises with my left affected hand showed no improvement. My physio, who was excellent says that that precludes me from any further botox treatment because it’s too expensive.Personally I think my left hand has worsened.

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