Tag: Neurological disorder

Posted in Archive, July 2013

Empowerment & Independance

Posted on by dystoniaandme

Independence has been a big issue for me ever since Dystonia hit me. I went from living at uni and being very independent to moving back into my family home and relying on my family to do everything for me. Simple things like just going to get a drink or going to talk to a member of my family in the other room became impossible tasks. To get around my house I relied on my parents to put me in a wheelchair and wheel me round. I often found and sometimes still do, that I push myself too far in my attempts to do things for myself and end up causing more spasms, however this never bothered me as I still get that sense of achievement by accomplishing the task.

In the beginning simple things like that fact I could dress myself and do my own hair and makeup were enough for me, as even though they were hard I managed to do them without any help. Sometimes this meant it took hours but I  loved it. Over the months though my desire for more independance built up. I managed to fulfill this desire once a week by riding, where I was in complete control of both body and horse.

Recently though I have been trying to explore ways where I could expand my independance without risking setting off more spasms. At first I was drawing blanks, then it hit me! I could bum shuffle! For those of you who are unfamiliar with bum shuffling it is when you sit on the floor and move using your legs and hips to pull you along, it takes awhile but it gets the job done.

This simple technique has left me thrilled. There are still moments where I need to be in a wheelchair as my spasms are bad and I am simply not well enough to do it, but the majority of the time I am able to. Things like going into the living to watch TV with my family or have a gossip are now so much easier.

Last year I felt like it was the end on the world and that Dystonia was consuming every aspect of my life. Now I am an empowered determined fighter, craftly finding ways to get around the Dystonia.  One day I shall be completely free!

Posted in Archive, July 2013

A Year On

Posted on by dystoniaandme

I am now a year into my battle against Dystonia and life has changed dramatically. A year ago I was a student midwife, now I am disabled and spent a lot of time trying to raise awareness of Dystonia. When I first received my diagnosis it seemed like the end of the world, I did not know how I was going to be able to cope with life. Now I am much stronger person filled with determination to make a difference.

I strongly believe that everything happens for a reason and even if you cannot see the reason at first, eventually you will. I believe I have Dystonia so that I can help raise awareness of the condition and help bring about a change so that sufferers receive better treatment. I still have a long road ahead of me but its one that I won’t give up on.

I visited my GP today to ask about further treatment for suspected Lyme Disease. I responded extremely well to the first month-long course of antibiotics, due to this my GP has prescribed me 8 more weeks of antibiotics to see if I have any further improvement on them. My main improvement so far has been in my hands, which has been an extremely exciting development for me. When I see my consultant on the 16th of this month I am going to put across to him that Lyme Disease could have caused my Dystonia. As Lyme disease is curable with enough antibiotics some of my current symptoms could disappear for good, and only the Dystonic spasms shall remain.

I also visited my dentist this morning to have my teeth cleaned. I can not rate the dental practice highly enough, despite my spasms and seizures whilst I was there they were extremely kind and patient with me. As my tremor is dislodging some of my teeth it is calming knowing that the dental practice will do all they can for me.

This afternoon I have a session with my reflexologist. I am so glad that she is coming today as I am extremely exhausted. It amazes me how quickly my body gets tired. I used to be able to be on the go all the time but now just two quick visits have left me half asleep.

I still cannot believe that I have suffered from Dystonia for a year now. Whilst I hate this condition, I also embrace it. By embracing Dystonia I am able to put all my energy into raising vital awareness and funds. The more awareness that is raised the sooner a cure will be found. My next awareness challenge I have set myself is to turn parts of my blog into a book. I  hope that by doing this more people will learn of the condition.

Dystonia may control my body, but I control the path I take in life. I choose to make a difference!

 

Posted in Archive, June 2013

Which Open Door Shall I leap through?

Posted on by dystoniaandme

Despite it being the third most common movement disorder Dystonia goes almost unknown to the public. It lingers in the shadowy background letting its brothers, Essential Tremor and Parkinson, take the limelight. By slithering along in the back alleys it can prey on its victims with ease, bringing devastation to those it touches. The medical profession cowers in its presence, refusing to open their eyes and admit what they are seeing, they send you to a psychiatrist instead, not understanding that this just gives the Dystonia more time to make itself at home in your body and wreak havoc when it sees fit.

By the time the Consultant realises it is Dystonia, you have already been suffering for so long. The spasms leave you drained from the pain, and you are desperate for any sort of relief. Then it seems like a miracle has happened, the consultant whips out a tiny bottle that brings promises of relief from the spasms, the pain, the fight. A few injections of this will sort you out, he promises, he tells you it won’t cure you and you will need it again in three months. You are over the moon, such a long period of relief seems too good to be true. The consultant, who seems to hold all the answers you have searched for, does not warn you that one day you may be fighting him.

Five weeks into your pain-free period agony grips your jaw, the spasm pushing it across to the point you’re sure it will dislocate. Emotions run through you: anger, sadness, heartbreak, devastation. No one warned you how hurt you would feel when the Dystonia reared his ugly head agony. You count the weeks on your hands repeatedly, this should not have happened for weeks yet. As the reality sinks in that you still have to wait at least 6 more weeks for more of the injections numbness sweeps through you. You feel so tired. A small part of you wants to curl up in a ball on the floor and cry.

You try desperately to contact your consultant but he ignores your pleas for help. Who do you turn to now? There are many open doors you could run through, but which one holds the key to help? Who will help you now? How many more Consultants are going to abandon you after dangling hope in front of you?

Which open door shall I leap through?

Posted in Archive, June 2013

A Fairly Positive Week

Posted on by dystoniaandme

I have had some really positive moments this week! On Tuesday I had a meeting with a woman who works for a service called Cross Roads. Their service provides a range of support. On a Thursday morning, starting in a few weeks time, a guy is going to come over to care for me for a few hours. This means that my mum and stepdad will get a break from caring for me, instead this guy will socialise with me and help me with my meds etc. Not only will this give my parents a much needed break but it will be great for me to socialise with someone who’s around my own age. I am really looking forward to this starting.

My Jaw and neck spasms are rather bad at the moment. I am doing my best to try to ignore them but it is a bit had to ignore the spasms when your head is completely lopsided and your jaw is pushed right across. We contacted my consultant a couple of weeks ago asking to be booked in for Botox treatment, but as has been the case for over 2 months now, he has still not replied to any of our emails. We are going to phone his secretary tomorrow to ask her to chase him, however she never sees the consultants she works for and can only email them, so I am not sure how much she can do for me.

Yesterday and today have been amazing. Yesterday I had another fantastic session with my personal trainer that left me exhausted but extremely happy! I just love my Wednesday sessions. Today I went up to the stables and had a wonderful RDA riding lesson. I rode Nelly again, she is such a beautiful horse and fantastic to ride. She is slightly more challenging to ride than Connie but I love this as it allows me to work on and develop my skills more! Being around horses and riding puts me on such a high, if I did not have to dismount at the end of the lesson I would stay on the horse for hours! Riding is pure bliss!

As many of you know I took part in several fund-raising activities to raise money for the Dystonia Society and ended up raising more than £800!! Last week I had an email from the Dystonia Society saying that I was their fund-raiser of the month. If you would like to check out my interview please click on the following link http://www.dystonia.org.uk/index.php/component/content/article/5-get-involved/370-fundraiser-of-the-month

 

Posted in Archive, June 2013

Stimulant Experiment Results

Posted on by dystoniaandme

As many of you will know, around a month ago I attempted to cut all stimulants out of my diet to see if it would have any impact on my tremors. Over the last week I have slowly introduced stimulants in low quantity’s back into my diet to see if there would be a noticeable difference in my body.

The results from my little experiment were extremely interesting. Whilst cutting out the stimulants did not stop my tremors it reduced them greatly, I would say it almost halved the number of tremors I have in a day. When I reintroduced the stimulants back into my diet this week, the number of tremors I have been having shot back up! I was careful to only consume a small quantity of stimulants just in-case it caused an increase, I did not expect this small amount to have such a big impact!

It is interesting to know that stimulants do actually have a physical impact on my Dystonia. Now that I know just how much of an impact it has on my symptoms I am going to make sure that I avoid stimulants as much as possible.

I find knowing that it impacts me to be a comforting thought, as it means that by avoiding consuming stimulants as much as possible, then to a degree, I have control over the severity and frequency of my tremors. It gives me hope that there are natural ways to control and treat this condition along side medication.

I am going to do more research into foods that can impact Dystonia to see if I can find anything else that I may benefit from cutting out of my diet.

 

Posted in Archive, May 2013

GABA and Dystonia

Posted on by dystoniaandme

I often view The Dystonia Society’s website to check out the latest information on research, treatment and more. The other day I started reading an article on their website entitled The Basal Ganglia and Dystonia. It was an extremely intriguing article and for those of you who have not read it yet I suggest you do http://www.dystonia.org.uk/index.php/about-dystonia/dystonia-and-the-basal-ganglia .

The section that interested me most was on the role of GABA in Dystonia. At the moment the medical society think (but have yet to prove) that a shortage of an inhibitory neurotransmitter such as GABA could have an impact on Dystonia, as it seems that Dystonia is a failure due to inhibition. Many patients, myself included, who suffer from Dystonia are sometimes put on medications such as Gabapentin, Baclofen or Benzodiazepines. All of these medication increase the amount of GABA in the brain.

I was extremely interested to read this as I currently take both Gabapentin and Baclofen and have found both to have incredible effects on my spasms. The Gabapentin felt like a miracle drug when I was first put on it as has had a huge positive impact on my full body spasm and on my eyes! The Baclofen at the moment is having a fantastic effect on my neck spasms as well other spasms.

So I cannot help but wonder if I have found the answer I have been looking for to why I have Dystonia! I know that I will have to wait until the medical society have managed to prove if this theory is correct, but I cannot help but feel slightly excited. I am always trying to understand why I have Dystonia, and to have an answer would give me peace of mind. I may have a long wait ahead of me but I shall be keeping my fingers crossed.

Posted in Archive, May 2013

Blissful Days!

Posted on by dystoniaandme

I am in such a fantastic mood! Today, after about 8/9 weeks of not being allowed to ride due to Non Epileptic Seizures, I finally got to get back on Connie. It was a fantastic riding lesson, and Connie was perfect as usual! I feel so confident when riding her, and really enjoyed every second of the lesson. I had been worried about the lesson, as my dystonia had spread since the last time I rode. However I need not of worried as my body behaved itself and I managed to do everything with ease.

I am completely and utterly exhausted but in bliss at the moment. The last few days have been great! My tea party was a fantastic success, the Go Blue Movement is going incredibly well and so far I have raised over £662 for the Dystonia society! It has just been the most amazing couple of days. It has all been so positive and I have been so overwhelmed by how successful it has all been.

If you would like to help me raise money for the Dystonia society please click on this link which will take you to my just giving page http://www.justgiving.com/Rebecca-Moller1 .

And if you would like to join in with the Go Blue for Dystonia movement then either dye you hair blue or wear something blue and take a picture of it and post it on the following Facebook event page link https://www.facebook.com/events/450399491712134/?fref=ts

 

Posted in April 2013, Archive

Dystonia Awareness Week!

Posted on by dystoniaandme

Dystonia Awareness Week is fast approaching, it runs from Saturday 4th May to Sunday 12th May. Last year my mum, step dad and I ran a 5k fun run up in London and raised over £700 for the Dystonia Society! However this year we had to rethink how we would raise awareness and funds for The Dystonia Society as now I am in a wheelchair the 5k fun run is out of the question.  After a quick search on The Dystonia Society website we decided that we would throw a tea party. There is also a slight competitive aspect to it, as everyone sends in the their tea party photos and The Dystonia Society judge the best.

I am also taking part in the ‘Go Blue Movement’. I am dying a section of my hair blue during awareness week to raise funds and awareness for Dystonia. The Go Blue Movement is an international movement, which started off in America! If you have not heard of it yet then I am sure over the next few days you shall hear more! You can easily take part in it by dying a section of your hair blue! If you do not want to use permanent dye, you can easily use a spray in, wash out dye!

If you would like to help me raise funds for The Dystonia Society then visit my just giving link! Every bit will make a huge difference for this small but amazing charity! http://www.justgiving.com/Rebecca-Moller1

 

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.