Wednesday, July 14, 2010

Tingly Tunings

As my brain is currently set to full blown radio static mode it seems like a good idea to show you how I managed to totally overload my 'at best piss poor' proprioceptive systems.

It's not yet fully understood why the proprioceptive process is so poor in people with Ehlers Danlos Syndrome, it's probably a combination of reasons. We tend to have problems perceiving where our bodies are in relation to themselves, let alone where we are in relation to all manner of inanimate objects, hence the frequent, clumsy accidents smashing into perfectly good door frames or tables. Although we can see them visually our brains and bodies can't fully process all that information in sufficient time to avoid collisions.

My physiotherapist J and I are feeling our way through various different types of physiotherapy to discover what works and what doesn't. Traditionally physiotherapy for EDS focuses on core stability exercises, which are vital for hypermobile people, but which also seem to fall a long way short of acheiving the kind of results they should do if improvements to core stability were the only answer. We're using a combination of core stability and the kind of physiotherapy that's used to rehabilitate people who've had neurological injuries like strokes. It seems to be that mixture of techniques which is key to gaining any improvement. 

It's both surprising and impressive. I have basic exercises to do like lying on my back on the floor and rolling a ball so that I can follow it properly with my eyes and head movement. The first time J and I tried the exercise I was completely incapable of doing it, but a few weeks on I can confidently roll the ball and track it - mostly! Moving on from that J wanted me to try some of the shoulder rehab exercises we'd done so many of in the years before I was diagnosed with EDS. The surprise for both of us was not that I couldn't keep my shoulders in their sockets whilst trying to do basic activities like put a teaspoon in a cup, but that if we wrapped a theraband around my body at thoracic spine level my brain suddenly switched on and I could put the teaspoon in a cup without my shoulders popping straight out of their sockets. 
Now we've reached the dizzying heights of bowls of flour and a variety of small objects hidden in there. With a theraband to provide some feedback around my ribs and thoracic spine the point of the exercise is to reach into the bowl of flower and try to figure out what object I'm holding. It's a bit messy, but effective. I've found that I can't identify anything if I have my eyes open, my brain just can't filter out all the additional information about my surroundings, even though I selected the objects to hide in the flour. However, if I shut my eyes I can correctly identify some of the objects. 

This type of exercise causes all manner of unpleasant symptoms for a period of time afterwards, ranging from zappy type pain to itching, numbness, tingling...oh and just for fun, increased clumsiness. However, the next time the exercises are tried there is a definite improvement so we're assuming that the increased symptoms are a sign that the exercises are affecting overall proprioceptive feedback and therefore continuning along the right line.  

Watch this space!


Louise Bolotin said...

Wow, this sounds really exciting! So good to hear these exercises are helping you gradually improve your mobility and coordination. I had to look up proprioception :)

And whodathunk a humble theraband could be so unexpectedly useful!

Keep us all posted...

s said...

That physio sounds superb.

And her patient deserves a GOLD STAR for committent and effort!

Lankylonglegs-Jo said...

Knowing all too well how that "walked into the door frame again" sensation goes... I'm really chuffed to read this, let's hope that continued wearing of the theraband will carry on helping. :)

Your physio is excellent!

CindyCB said...

Interesting stuff! I think I can relate to some of that, undertreated/untreated hypothyroidism puts you off balance, walking into doorframes was a special of mine before treatment, and not being able to filter out other stimuli (don't expect any kind of sensible reply from me while the TV is on).

Hmm, I also have hypermobility - I find the two crop up together quite often.

Nemonie said...

This sounds very familiar. I seem magnetically attracted to door frames, tables and corners. I frequently turn too soon and smack right into them, or smash plates and glasses into the shelves I'm trying to put them on. Your physio sounds fab, I shall have to ask mine about proprioceptive exercises. I hope the increased symptoms die down as you progress.

Veronica said...

Watching this space.

And so far today, I don't think I've made contact with any doors - so it must be a good day!