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!
Today has been a slightly better day, in comparison to the last 5 or 6. The last couple of days I have been almost unable to even hobble around the house, without one or two members of my family holding my arms, and helping me. Today however was different! My right leg still shook like mad, and my knee still over extended, but I managed to hobble around unsupported. I only managed a short distance, however I am still overjoyed by this as it is a big improvement compared to the last few days.
I am thinking about asking my Occupational Therapist for a walking stick. At 20 years old, I did not expect that I would have to consider this, however if it helps that’s what counts.. My theory is that having a walking stick will either go one of two ways. The first being that it helps me with my balance, so hobbling around the house becomes slightly easier and less dangerous. The second is that with my natural ability to fall over everything and anything, the walking stick will become yet another obstacle for me to try to avoid, yet will still fall over. However I will never know unless I try, and it is not the end of the world if it does not help. Anything is worth a shot at this point.
Tomorrow my new wheelchair is arriving! It is a self propelled one, which will give me some much wanted independence! I am really rather excited about its arrival and cannot wait to go out in it! It will put my mind at ease as well. When ever I have someone pushing me, I have a mental freak out, I know that they are not going to deliberately through me out of the wheelchair, however I still end up muttering under my breath “stay away from the curb…watch out for the hole” over and over.
My hand also seems a lot better today, I have my fingers crossed that it stays this way. It has improved so much that I did not wear my splint today. This is really positive as I don’t like strapping my hand up, but it helps contain the spasm so I can’t complain.
I have also started to slowly increase my dose of Gabapentin, I am currently taking 1800mg a day and am hoping to get it up to 3600mg a day. As I am finding it to be a very beneficial medication my consultant thought this would be a good idea. I am doing it in steps of 100mg in case I start getting any side effects, that way I know how much my body can handle.
Overall today has been a very positive day and I am hoping that the rest of the week continues to stay positive.
Yesterday the little dystonia alien decided it was bored of manipulating my face, arm and hand. It decided it needed yet another toy. It chose my leg! For a long time now my leg has not been completely normal, every now and then it would over bend or I would get odd sensations running up and down it. I choose to ignore these niggles and put it down to issues I had had previously with my leg. However the last 4 or 5 days these niggles had got more frequent and were more noticeable, I decided that now was the time to speak up and express my concerns. So off we went to the doctors and yet another medicine was added to my cocktail of drugs, in attempt to try and lessen the dystonia aliens effects.
Yesterday the alien decided to up its game again. Instead of causing the usual niggles, it decided to cause a painful spasm that twisted my foot inwards and curled my toes up, then it decided to shake violently. The alien decided to do this each time I attempted to walk. In the end I could just about walk on the tips of my toes, however sometimes this set the alien off as well. So I spent the day hopping around, trying to get on with the day as usual and attempting to distract my self. However when I got up to try and walk today, I decided to try and walk normally, hoping that the spasm would not return. But after taking two steps the alien decided to play games, the spasms once again twisted my foot inwards at a bent angle and curled my toes up before shaking violently.
Due to the little dystonia alien also affecting my right arm and hand, I cannot even walk with a crutch, as holding a crutch would set off the spasm in that hand and arm. Therefore I have had to resort to using a wheelchair for getting out and about. Its not a ideal option but for the time being its a realistic one. I went out shopping with my parents to get a few bits today in my wheelchair. At first I was bit anxious, I knew that now more than ever I would be stared at. However once again I found that the stares just reassured me that I could do this, that I didn’t mind. After all, if it was the other way round I would most likely also be just as rude and look.
I feel so thankful for the support and love I get from my family and friends. Without them it would be a much harder battle with dystonia. With their love, help and support, I am able to get on with daily life and be happy. I know that no matter how hard things get, they will always be there for me. I am so thankful for them!