Tag: splints

Posted in Archive, October 2013

Short Term Goals

Posted on by dystoniaandme

As I have mentioned before my body does not react very well to me getting ill, even colds cause my Dystonia alien to act up more than usual. Therefore I have spent today spasming, having seizures and trying to find the energy to get things done. I have not slept well the last few nights which I know will be aggravating my symptoms – thankfully I have reflexology tomorrow which should help with my sleep.

I have spent a lot of time thinking today about goals. I have lots of long-term ones that I am determined to achieve, but it occurred to me today that I also needed short-term ones as well. Goals that would keep me motivated even when I am feeling under the weather and my body is at its worst. I have decided that my first goal will be to be to walk in my splints around the house by Christmas without crutches! As I am starting neurophysiotherapy soon I see no reason as to why this cannot happen. I was walking around the house last Christmas and I shall, with the aid of my splints, be walking by this Christmas.

There is a girl on my college course who I find very inspirational. Despite being young (17), she is coping amazingly well with a combination of different conditions. One of her issues is that she cannot feel her legs – she has some very limited feeling in her upper thighs but that’s it and yet with the help of crutches she walks. Now most of the time I can feel my legs, and I have the extra help of splints, so it is time to put them to good use and start walking!

ImageI know that I may not be able to walk every day due to my Dystonia aliens games, but I will walk as far as I can every day, whether that only be walking 2 footsteps or walking for 2 hours, I shall every day walk! And I shall do this by Christmas!

 

Posted in Archive, September 2013

Breath of Fresh Air

Posted on by dystoniaandme

After Tuesday nights functional paralysis drama, I am pleased to report that my little Dystonia alien has not scared me witless with a repeat episode (so far). In fact other than a light and pain triggered seizure whilst at college yesterday, I have been rather good. I even managed to go riding on Thursday!

I spent Wednesday in bed resting, as I did not want to trigger off any spasms or seizures as I desperately wanted to attend both college and riding on Thursday. Amazingly my Dystonia gave me break from the recent dramatics and I only had to contend with my usual spasms. The normality of the usual spasms were a much-needed breath of fresh air. Both college and riding went fantastically well, with my spasms only acting up right at the end of riding – thankfully that was perfect timing,

Yesterday, for several hours my legs were functionally paralysed, this did not scare me as I am used to this happening several times a week. It turned out that it had been triggered by me strapping my splints to my legs too tightly – but hey its a lesson learnt. I now know to always check the tightness after strapping myself to them. I had a little light and pain triggered seizure whilst I was at college yesterday. I feel very lucky that the college dealt with this calmly and once I regained consciousness they let me carry on as if nothing had ever happened, which is just how I hoped they would react.

Today my body is extremely sore and I am experiencing an on/off functional paralyses to my legs. Therefore I am having a lazy day in bed. I am so happy that I am managing college and riding. I had been worried that the two would be too much for my body to cope with, but so far so good. It is days like the last few that remind me that despite being in a wheelchair and not really having control of my body, I can still make a life for myself and enjoy the things I love. I just have to remember to balance  things out… I’ll get the hang of balancing eventually 😉

 

Posted in Archive, September 2013

Benedict Blindness

Posted on by dystoniaandme

I had been worried about how my body was going to cope with college and the added stimulation. Thursday and Friday at college went perfectly with only minor hiccups,  which led me into a false sense of security. In typical Benedict style I was shown reality yesterday. As I was feeling pretty good and only a bit tired – I should have seen this as a warning sign – I decided to go with some of my family to a friend’s house warming party. It started off fine, I was enjoying myself, and even indulged in a cheeky Gin and Tonic. However soon the tiredness really hit, again this should have set of the warning lights but I ignored it and carried on chatting.

My eyes spasms, the ones that cause me to go blind due to the eyeballs being pulled up and back, started. At first they were not too long, but they kept happening and started causing seizures. Leaving at this point was not an option as my brain had disconnected from my legs, leaving me functionally paralysed.

Then it all calmed down. I thought my little alien had gone back to sleep. It turned out to be the calm before the storm. I went blind again, and this time my eyes didn’t seem to be coming back, I tried sensory tricks which failed, I even started hoping I would have a seizure as that would normally bring them back yet I was staying unusually conscious. This began to make me nervous, I was in a new environment, surrounded by lots of people who I didn’t know (they were however all very lovely and helpful), and this spasm was becoming unusually long.

The longest this particular spasm has ever lasted is 15 hours, and after an hour of being blind I began to panic that the same thing was going to happen. When I get nervous I talk…a lot, which my poor mother had to put up with. After taking some Diazepam my legs came back however I still remained blind. In the end we decided that the best thing to do was to try to get me out the house and to the car whilst I was blind and then judge what to do when we got home. Getting out of the house however was the tricky part. I had to, using my crutches and splints, walk out and down two small steps, then up two steps and then transfer back to my wheelchair. Doing this whilst I am able to see is hard enough, so doing it blind was going to be difficult. With the help of my parents and some lovely people I got down the first two steps and up one, it was at this point – just one step away from my wheelchair that I had a seizure.

I am so thankful for all the people that were around me, caught me, and helped me. If they all had not caught me I would have without a doubt woken up in A&E hooked up to IV pain relief. Between them all they managed to get me into my wheelchair, and then waited around until the space between my seizures was long enough to transfer me into the car. Thankfully, once we managed to get me home and got some Oramorph into me, my seizures calmed down and my eyes started to stay in place!

After a chat with my mum, we have agreed I am not allowed to go out/do much at the weekends for the first half term of college, so that my brain can adapt to the added stimulation and learn to cope with it. This way I can stay safe and realistically it will eventually enable me to do more.

I have to learn to take baby steps before trying to run. I’ll remember this one day. On the positive side at least I could see for some of the house-warming and had a good time!

 

Posted in Archive, January

Wibbly Wobbly leg

Posted on by dystoniaandme

Since my last post my ability to move around has deteriorated rapidly! The shake/tremor in leg has become extremely violent and my leg feels like its made of jelly. The force of the tremor physically shakes the upper parts of my body as I try to hobble about. I have never had a sense of balance, so you can imagine how hard I am finding it to stay upright, when my leg is shaking me to the point that I would fall if I was not being held up. This tremor has made my knee extremely painful, the other night the pain was so excruciating that I ended up having a Non Epileptic Seizure.

I am trying to work out whether this tremor is a new development to my leg or if it is a development of a Dystonic movement that was already happening. You see, often when my leg goes into spasm, as the spasm is about to go, my right leg would shake like mad. The way I always thought of it was that my leg was shaking away the spasm, this sounds silly but it was a comforting thought, these tremors would last from to seconds to a good couple of minutes. I think it is likely that this new issue is simply a development of the previous tremor, as Dystonic movements do develop (get worse).

However this creates a whole new ball game. I know that with Dystonia, you cannot really forward think, as you never know what will happen from one day to the next. Nevertheless I find myself having to think forward, as I like to have some sort of plan in place. After speaking to someone with similar leg problems to myself and hearing what they do to manage their symptoms, I have had an idea which I would like to discuss with my doctor. I want to put across to him the idea of getting a knee or leg brace. I have previously used a splint for my hand spasms and I found this very helpful in containing the spasms and most of the time it prevented the spasms from getting too extreme. As this worked well for my hand, I think it would make perfect sense to try out on my leg.

I shall of course listen and take on board anything my doctor suggests, I presume he shall offer me some sort of muscle relaxant to help, and I shall happily do/try whatever he wants me to. However I think I shall really press this idea. After looking into it more, I have read about a number of people who have tried knee or leg braces and found that they had good experiences with them. I plan on waiting a few more days before I go to my doctor. I had originally planned on waiting two weeks before I went but I don’t think I can deal with the pain the tremor is causing for that long. The reason for waiting is so that I can go and say, this has been happening, I believe it is a development of a previous movement, its been having for X many days and this is what I want to suggest. For me, I think this is the right approach to take with my doctor.

Who knows what will happen, I can only hope that he decides to give my idea a go! Until then I am going to avoid moving around as much as possible, so that I do not cause myself any more pain!