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

Posts tagged ‘Physical therapy’

Video

TENS Machine in action

This video will show you how I use a TENS machine to counteract the spasms. By placing the pads on my arm and putting the TENS machine on full power it causes the relaxed muscles to contract, which in turn forces the spasming muscles to relax.

The signals the TENS machine sends, forces the muscles to  pull my hand upwards (you can this several times) and forces the hand to relax.

Please ask if you have any questions.

 

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A Bit Of Retail Therapy!

Today has been the highlight of my week and has distracted me from the new issues with my leg. My mum and step-dad took me out clothes shopping, which meant that I also got to push myself in my new wheelchair!  I knew that trying on clothes and pushing myself would be exhausting, so I made sure that I paid extra attention to my right hand, so that I did not do too much and cause it to spasm.

All in all  it was a rather successful day out! I managed to get some jeans and some lovely new tops, and I managed to push myself for longer than I had expected. From time to time my mum did have to remind me not to over do, I think I got a bit carried away with having some independence 🙂 In total I think I managed to push myself for about 40 mins!!!! This was a lot longer than I had expected. When I went out in my chair briefly the other day, I only managed about 20 mins, so this was a huge improvement!! It was a tiring but fantastic day!

I am going to go and see my Doctor this week, and see if he can suggest any medication that will help with the tremor in my right leg and talk about my ideas with him, and get his views on it all. I am also going to write an email to my consultant explaining to him the change in my leg and how it is affecting me and getting his advice on what to do about it, I shall also inform him of my ideas for treating my leg and get his opinion on that as well.

Today was exactly what I needed, some laughter, retail therapy and some independence. It helped me refocus my mind on everything, and see that although my leg is bad and making things really rather difficult, it is not the end of the world. I can still go out and laugh and shop like anyone else, the only difference is that I get to sit on a comfy cushion and attempt to tone my arms by pushing myself along at the same time!

Musings on my upcoming treatment

Back in 2009 I was admitted into my local hospital with Complex Regional Pain Syndrome in my right leg. I stayed in hospital for a total of six months and still suffered with the condition for a few months after that. The condition meant that despite the fact that I could see my leg so I knew it was there, I didn’t feel like I was connected to it. It would change temperature, colour and sensations. I could not bear even the touch of clothes, and was not able to move it. As a result I had intensive physiotherapy and Hydrotherapy, which thankfully worked a treat for me. I had to learn to move my toes/leg/walk again and retrain my brain to understand that the floor or clothes etc. were not actually harming me.

Due to what I went through with the Complex Regional Pain Syndrome, I can understand how/why my Neurologist has recommend an intensive physiotherapy and rehabilitation treatment plan. I completely get how it will hopefully (fingers crossed) help with my symptoms in my arm and leg. What I am curious about is how it will help with my facial spasms and eye spasms!

When I had intensive therapy before, I basically had to bombard my nerves constantly. I was given exercises to do every hour (in the day) if the physiotherapists were not with me. This meant standing and putting my foot on the floor or running brushes up and down my leg etc. They were all extremely painful but it was by forcing myself to do this constantly that my nerves resumed normal activities. I am expecting that my upcoming treatment will be similar, I am presuming that I shall be made to do movements/activities that will bring on a spasm repeatedly in an attempt to retrain my brain. To me this makes sense, however with my facial spasms they tend to be pretty random, though sometimes I feel this has something to do with eating. Again my eye spasms are random and vary between the length of time they last, with the shortest being seconds long and the longest being 15 hours.

I know that I cannot get any answers to my musings until I am there and taking part in the treatment programme, but I am so curious! The whole disorder intrigues me so much. The human body is such an incredible thing, and although we know so much about it, when it comes to the brain we know very little. New things are discovered all the time, and each new discovery allows for more research to be done. We learn more and more each day. I may not even get the answers during my treatment. One small thing could trigger another. I can’t wait to see what my treatment plans does for my dystonia! Its a big unknown but hopefully one with a positive outcome.

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