Tag: treatment

Posted in April 2013, Archive

What caused my Dystonia?

Posted on by dystoniaandme

Since Dystonia started affecting me nine months ago, I  have often asked what caused it? I have accepted the fact that I have Dystonia, and why it is me that has it is no longer important to me. What does matter to me is what has caused it!!

I understand that Dystonia is caused by a part of the brain called the Basal Ganglia sending out the wrong signals, but what caused it to do that? Is it genetic, do I have a gene mutation, is it due to dopamine, have I fell and landed on my head to many times? It may seem like a trivial thing to dwell on, as after all knowing why/what caused the Dystonia, does not change the fact that I have it, all it may do is change my treatment plan. Yet it remains an important issue to me, I need to know what caused my brain to stop functioning the way it should.

What I cannot understand either is why the Doctors do not want to find out the cause? I had a CT scan done back in August which confirmed that there was nothing structurally wrong with my brain. Knowing that is great, it’s a relief and something that I can strike off as a probable cause. However beyond this scan no other test has been done, so how can they treat me if they do not know the cause? I know in many cases the cause is not always found, however surely the logical thing to do would be to test for gene mutations, trial me on levadopa etc, check that there is no cause which would require a different treatment plan, before trying and the majority of the time failing, to control my symptoms?

I try my best to avoid thinking about what has caused this, as I understand that I am unlikely to get an answer any time soon, but that does not stop me wanting it. All I can do is hope that a doctor will eventually test me for possible causes. Even if an obvious cause can not be found, I would be much happier knowing that they had at least tried!

So for now, I shall cross my fingers and hope that I will one day get the answers that I need. Until then I shall continue to press my doctors to carry out the tests, until they decided to listen to me.

 

Posted in Archive, January

A Step In The Right Direction.

Posted on by dystoniaandme

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.

 

Posted in Archive, December

Musings on my Dystonia and the NHS

Posted on by dystoniaandme

Today is one of those days where I find myself  thinking about everything. The other day I had to inform my university that I would not be able to return to my midwifery training because of my Dystonia. I still have to speak to them a bit more about it in the next few days. Yet sitting here right now, my body is completely behaving, I feel normal. I feel like I am able to just get up and walk about and do what ever I want. Part of me even dares to say you’re fine. However I know I am not fine, yesterday evening I went blind three times, my jaw was in spasm and my body was very jerky. I know that the reality is that I am not fine or ‘normal’, but my body at this very moment in time feels like I am.

A large part of me wants to just get up and walk about and see what happens, I know that there is a huge chance that my right leg shall immediately play up and I will end up on the floor, but then again if I don’t try these sort of things out, how will I ever know what I can and cannot do, or what progress I may have made.

My consultant, when I first met him, gave me the impression he was wonderful and would fix me. The reality of it has finally sunk in, unless you’re sitting in front of a consultant or doctor the chances are that unless you fight them they will do bugger all for you. The way I see it right now is that I have two choices, I could spend my days feeling sorry for myself and waiting until October/ November next year to get treatment or I could start pushing my body a little bit further everyday and start trying to retrain my brain myself.

Over the last few weeks I have tried to push myself, so far it has been successful 98% of the time. I can now use my right hand to hold a spoon, I can stand with my right foot flat for about a minute or two which is a huge step. I am making what I think are huge positive step forwards and that is without the help of doctors or consultants, the people who should be helping me! I have also noticed that I tend to go blind when I feel like my eyes are straining, the obvious solution to this in my mind, is to go to the options and get some new glasses, so my eyes don’t have to strain so much, after all there is no harm in trying and it may stop the blindness.

What irritates me the most is that I am having to struggle through this and try to figure out how to beat Dystonia with very little help from the medical profession. They are the people who should be giving me ideas of how to help myself, or new things to try etc, yet their not doing any of this, I am lucky if they even return my calls or emails. The care the NHS provides shocks me constantly, I feel completely abandoned by them. However I will  not settle for this level of care. I plan on doing my best to bringing attention to the failings of the NHS system.

 

Posted in Archive, november

Today’s Thoughts

Posted on by dystoniaandme

My jaw is still in spasm, which is really rather painful. However on the positive side of things, my medication, has really helped and my spasms in my right arm and leg have not been that bad these last few days. The pain in jaw can get rather intense and this tends to cause me to have a Non Epileptic Seizure. I am getting better at identifying when I am going to have a seizure. This means that I am able to inform someone, like my mother, seconds beforehand. This is a huge step and a big positive, as it means that whoever is with me, can try to prevent me from injuring myself during in a seizure. I am hoping that I will hear from the consultant soon, so I can get treatment for my jaw, which in turn should hopefully mean that my seizures will disappear again.

The path my life has taken, at this moment in time, is not one I would have chosen for myself. You would have to be fairly crazy to want to have Dystonia. However I accept that for now Dystonia is part of me, and I cannot magically make it disappear. Dystonia is one of those conditions that on some days is fine and does not play up that much, on other days, it is a gigantic pain.

I am so thankful to my family, friends, and all the many people who contact me to support me. They are all amazing and help me stay strong on my bad days. They help me laugh my way through the spasms, and make sure I don’t hurt myself to much during my seizures. I really don’t know how I would have coped with Dystonia without all these wonderful people in my life!

Posted in Archive, november

Facial Spasms

Posted on by dystoniaandme

Last night I got a bit of a shock. The left side of my bottom lip went into spasm, and the whole of the left side of my face looked and felt odd. Now I received treatment for my Oromandibular Dystonia on the 18th September, so I was not expecting this to happen so soon, as Botox injections last for around 12 weeks, and at the moment I am on week 8.

When I woke up this morning, my face felt and looked normal. Which gave me some relief. However after eating my breakfast I can already see and feel the spasm tugging at my bottom lip. It is in an extremely strange sensation. The only way I can describe it, is to imagine you have bad cramp in your lip and at the same time someone has a piece of string, which they have attached to your lip, and they pulling down on it.

On the positive side of things the spasm was nowhere near as extreme as it was before. I am hoping that as I have noticed the spasm happening at an early stage, I will be able to be referred for treatment and receive it before the spasms get to an extreme point.

 

Posted in Archive, October

Determination!

Posted on by dystoniaandme

So I know Dystonia is thought of by the medical society as incurable but I have to disagree. Personally I think that the medical society know so little about Dystonia, that to say it is incurable is madness. Just because they have not found a magic treatment plan or pill that works for everyone does not mean it cannot be cured. Why accept such such a depressing prognosis? Why not stand up and say NO! I am going to beat this thing and prove you all wrong!!

Life has thrown a hell of a lot at me and so far I have beaten every single thing. I plan on beating Dystonia too. In 2009, I suffered from Complex Regional Pain Syndrome and I was hospitalised for six long months, yet I didn’t let it win! It took about 9 months but I beat it! I had to teach myself to walk again, I had to retain my brain to understand that things touching my leg weren’t actually harming me. It was agonising but I beat it!

If I can beat CRPS then I can beat Dystonia. The doctors all admit that CRPS and Dystonia are very similar, and  treatment for them both is again very similar. So in my eyes if I can beat one, then I can beat both! Before all of this happened in July, I was so happy, I was training to be a midwife and loving it! I refuse to let Dystonia stop me!

So little Dystonia alien, if you can hear me, I would be very afraid! You have had your fun and now it is time for you to leave! I have had enough of you controlling my body! I am going to take back my body and I am going to go back to my studies!

Posted in October

Waiting Lists

Posted on by dystoniaandme

In the post today I had a follow up letter from my neurologist. He is still hoping to get me admitted into my local hospital for treatment, however if the hospital does not want to take me on, he will put on the waiting list to be admitted into the National hospital for Neurology. The waiting list for the National is a year long.

I am in two minds over this. It would be easier for me to be in my local hospital, as it would mean quicker treatment, my family and friends would be able to visit easier, and its an environment that I know well. However if I was admitted into the National I would be on a ward that has treated many people like me, which gives me confidence in their treatment plan, and there is a chance that even if I have treatment at my local hospital, I will end up at the National hospital anyway, so maybe going there first would make sense.

I know that at the end of the day treatment is treatment, and I am so lucky to have seen such an understanding and helpful consultant. However waiting a whole year for treatment scares me, so with that in mind going into my local hospital is very appealing. After all how much more could go wrong in that time? But then again, nothing else may go wrong! On the other hand even if I have treatment at my local hospital, I may still have to wait to be admitted into the National. I know that at the end of the day that I will be happy just to get treatment, but the unknown over which waiting list is shorter is slightly scary.

Posted in October

Musings on my upcoming treatment

Posted on by dystoniaandme

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.

Posted in October

Wheelchairs and me

Posted on by dystoniaandme

After spending the last couple of weeks in a wheelchair, I have decided that I am not meant to be in one…EVER! I simple do not trust anyone pushing me. Now I know that no-one was ‘meant’ to be in a wheelchair, but I am honestly a control freak. Every curb, bump, lamp-post, person, etc, that appears sends me into a panic! I find myself constantly saying “please steer further away from the curb” purely because I am terrified of falling out.

I know that whoever is pushing me, is trying their best not to throw me out, or run into anyone/anything, but I panic anyway. I normally end up gripping the sides or leaning away from the curb, despite knowing that these actions will not stop me falling etc. I think most of my panic is because I know that if I was pushing the wheelchair, I would be an awful driver, so in my mind, everyone is automatically a bad driver.

However, I must admit, that despite my irrational fears when in my wheelchair, I have had a few amusing moments in it. Take for example, my mother the other day, deciding to run (whilst pushing me) down an aisle in Tesco singing the James Bond theme tune. It was a moment that had us both in fits of giggles.

My fear of other people pushing me in my wheelchair, has just increased my excitement at my upcoming treatment, if there is anyway they can improve my symptoms so that I am able to walk (even if its only for short distances) would be so amazing! I can only hope and pray for the best!

Posted in Archive, October

Neurologist Visit

Posted on by dystoniaandme

Yesterday I went up to London to have my first consultation with my new Neurologist. Despite having read a ton of positive patient reviews of him I was still very nervous. It turned out I had no reason to be nervous!! He was a truly lovely man! He listened to all my explanations, brought on spasms so he could see what they did to me, and was very understanding.

He has decided to get me admitted into hospital were I shall receive intensive physiotherapy and intensive rehabilitation. He believes that with the right treatment there is a good chance I could  regain control of the majority of my body. He thinks its all to do with retraining my brain. I have no idea how long I shall be admitted for or when but I don’t care, their is a chance that I could return to being me!  If this treatment plan doesn’t get the results my neurologist is hoping for then he plans to put me into a different hospital which he said had a fantastic intensive therapy programme but had a much longer waiting list.

It felt amazing to have a Neurologist who actually cared, who understood how much of an impact the dystonia was having on my life. I left the consultation knowing that no matter what happened from now on the neurologist would be there for me to contact and I know that he will try his best to help relieve me of my symptoms.

I am now more hopeful than ever! I know there is a chance that it may not work, but the belief he had in the treatment programme was very reassuring. I cannot wait for it all to begin! I am rather curious as to how it all works and have a million and one questions to ask now! I cannot wait to throw myself into it!