Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Neurophysiotherapy

Today I had an appointment at Jacketts Field Neurological Centre for my neuro-physiotherapy assessment. I was slightly worried as I had heard very mixed reviews about the unit but was doing my best to go with an open mind. As it was an assessment I knew a lot of the time there would be spent answering questions verbally e.g how does your spasms affect your ability to swallow or do you have any walking ability? However some of it was going to be physical, this left me concerned as my body is currently in meltdown mode due to lack of Botox so moving about could be painful. Luckily my mother agreed to come with me which put my mind at rest, if the worst did happen and I had seizure after seizure and an ambulance needed to be called, I would be safe and my mother would be able to instruct them on what needed to be done – however all that worrying was for nothing as I didn’t have a seizure 🙂

After answering a lot of questions and having a good laugh with the physiotherapist, it was time to demonstrate just what my little Dystonia alien does to my legs. Figuring I would only have to take two or three steps with my walking sticks, plus the physio and my mum holding me up, I happily stripped off my splints and stood up. This promptly set off my spasms in my legs and the next things I knew I was on the floor! I had not even taken one step! Benedict obviously had been enjoying playing twister with my face and got his knickers in a right old twister when asked for my legs to join in…stroppy sod! As much as my body is now a little sore at least it gave the physio a good idea of what exactly I am contending with.

Due to how much my body does, the assessment did not get finished even though we majorly ran over time! So we have had to book another assessment in! I am really looking forward to this.

On a quick note this Saturday I am attending my local Dystonia Society Group meeting, this will be this first one I have been to and I am so excited to meet other people with my condition!

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Comments on: "Neurophysiotherapy" (4)

  1. I am new to this. I have a 10 year old daughter which has dystonia in her lower legs, it affects the way she walks. She walks slow, drags her legs, can not jump. I would like to know how old you were when they noticed something wrong, and what ou symthoms were?

    A worried mom

    • Firstly let me express me how sorry I am for hearing about your daughter! I was not diagnosed until October 2012, however I did not get seriously ill until the summer of 2012. I have had symptoms for years though and my legs have always not done want I have wanted. x

      • Thank you very much for responding.

        What kind of symptoms did you have in the begining? And has it been something that just has gotten worse? Is yours from genetics?? Sorry for asking so many questions… My daughter was around 7 when we noticed her feet were pulling in. Now her feet are always pulling in and she walks dragging slow motion. When you say you got seriously ill, do you meen the dystonia, or something set it off worse?? Just leaning on all of this,

      • At first it started with my feet just not doing what I wanted its very hard to describe, then my toes started curling under. Soon my whole foot would curl under and leg would spasm and twist and drag. I would point out though that no dystonia is exactly the same. I have not been tested for genetic Dystonia so I don’t know, though this is something I am going to push for later down the line. Mine has gotten worse. I am unable to walk at the moment and use a wheelchair. When I say seriously ill I mean I went from being ‘fine’ studying at uni to being being confined to a wheelchair in month, I also have Lyme Disease though which I have had had undiagnosed for 16 years which most likely has caused some sort of damage to my brain and caused this

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