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Posted in Archive, June 2013

Yesterdays Fantastic Session with my Personal Trainer

Posted on by dystoniaandme

I am not the type of person who likes to sit around all day doing nothing, I like to challenge and push myself. Sometimes I do not recognise my limits and I push myself to far but I would rather try than give up. Yesterday I had a session with my personal trainer. Despite feeling ill and having awful spasm for several days I decided to go ahead with the session as I felt slightly better. I am so glad I went ahead with the session as it was incredible.

At the start of the session I was a bit worried as we were going to try to do boxing. I was concerned that my arms would act up and that I would have a lot of spasms, however I will never let my Dystonia stop me from at least trying to do something, because if you never try then you will never know what you are capable of. It was the most fantastic session as my hands did not spasm once! I had a teeny tiny arm spasm that wore off very quickly, but I don’t really count that.

I still feel like I am still on high from the session, it was extremely therapeutic as well as a good work out. I am completely astounded at how well my limbs behaved, it has filled me with joy as it was a fantastic achievement. My arms were not to great later in the day but I did not care as I felt like I was sitting on top of the world.

As an able-bodied person I never tried boxing, I brushed away from the idea of it, declaring that my lack of coördination and my ‘girlie’ attempts would be embarrassing. So I am actually rather thankful that because of my Dystonia alien I got to try boxing out. It was an amazing experience, and I don’t think my punches were ‘girlie’ at all. Over the last few sessions I have realised that I am stronger than I thought.

I feel extremely lucky to have found a personal trainer who is not scared of my condition and who comes up with inventive ways to get me working out e.g using a crutch with him putting resistance through it to do a chest press. Without his fantastic help I am sure that my spasms and my body would me in a far worse state than what they are at the moment. His work outs keep my body moving, which helps give me that extra bit of mobility. His help has given me such confidence in myself and my ability to deal with my spasms. I never thought I would enjoy working out, unless it was on a horse, and now I love it. I love my daily work outs and I am always looking forward to my weekly session.

I know each Dystonia patient is different but I would defiantly recommend looking into a personal trainer to see if they can help you. You may or may not benefit from it, but if you never try you will never know.

Posted in Archive, June 2013

Frustration With Lack Of Help

Posted on by dystoniaandme

Over the last couple of days I have not felt to great and my spasms have been awful. I have found myself going from being boiling hot one moment to shaking with cold the next, along with some interesting spasms. My legs latest trick is to spasm so that the leg is completely back to front, which is not a comfortable position to be in. I am going to try and get my mum to capture a picture of it the next time it happens.

Thankfully today I am feeling slightly more like myself and my spasms have been less extreme. I don’t know if the antibiotics that I am on as a trial for possible Lyme Disease caused the increase in spasms or if I was just under the weather.

I am still waiting to hear from my consultant in regards to being admitted for a week so that I can get some help.  We last heard from him on around the 15th April and despite us sending him several emails and chasing his secretary we have heard nothing. When ever I have an appointment with my consultant he seems great, however I am getting more and more frustrated with the lack of help I am getting! Everything that was being arranged for me seems to be not quiet what he gave me the impression it would be. Last October he put me on the waiting list for an inpatient intensive therapy program, and told me that the waiting list for the program was about a year long. However I had an appointment up at the hospital the other day where I was interviewed by two members of staff who will at some point decide IF they are going to admit me to the ward or not. IF I do get admitted it will not be until around June 2014.

I struggle to believe that there is no other help out there that could be put in place for me now. I understand that hospital wards are busy, however surly there must somewhere be at least an outpatient  Neuro Physiotherapy service that I could be referred to  This is going to be something I will discuss with him when I eventually get to see him. I am hoping that I will at least have an outpatient appointment with him soon as I am in need of my Botox injections for my jaw and neck to be redone.

Until my consultant sorts everything out I am going to keep my fingers crossed that Lyme Disease is what has caused this mess, as at least then I know the cause and that is one thing I can stop worrying about.

Posted in Archive, June 2013

Rare Conditions, Doctors and Reflexology

Posted on by dystoniaandme

Since I posted my blog post about Lyme Disease and Dystonia I have heard from a variety of people who have Dystonia caused by Lyme Disease or have both Dystonia and Lyme Disease. It has been extremely interesting reading people experiences of the two conditions. What has shocked me is how common this ‘rare’ disease seems to be!

I was doing some research on the two conditions earlier today when I stumbled across a blog written by a Lyme sufferer. She, like so may Dystonia sufferers do, has had to fight and battle against the NHS for treatment. Again she unfortunately has had the same experience that many Dystonia sufferers do in that a neurologist misdiagnosed her as having a ‘Functional Movement Disorder’. The more I read about these supposedly rare conditions the more it seems that the moment a doctor feels a little bit out of their depth they slap the label Functional on to their patient without listening and without further testing. From what I have read this often causes sufferers to question themselves! Whilst I understand that some people must have Functional disorders, many people don’t and are wrongly labelled as so, which causes problems when it comes to receiving correct treatment. It is frankly disgusting.

I came across an article earlier today which listed the neurological symptoms of late stage Lyme Disease and I ticked all but one box. Which has raised my hopes just that little bit more, that I may have found the cause to my Dystonia. It even offers a bit of hope that one day with treatment I may be lucky enough to have some improvement.

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Today I have felt rather under the weather, with my spasms being completely out of control. This has left me feeling exhausted and craving sleep. I have unwillingly refused to let myself sleep all day in the hope that I will manage to get a decent nights sleep tonight.

Yesterday I had my second reflexology session which was once again heavenly. It left me extremely relaxed and sleepy. I managed to get 12 hours sleep which was very much-needed. I am arranging for my next session to be done in the evening so that afterwards I can snuggle straight into bed and go to sleep. My reflexologist was hopefully that if we did an evening session so I could go to sleep afterwards then the benefits of the session may last a few days longer, which would be fantastic!

I cannot wait for my next session.

 

Posted in Archive, May 2013

Have we found stumbled across the cause??

Posted on by dystoniaandme

Whilst sitting in a waiting room the other day my mum stumbled across an article about Lyme Disease. Lyme Disease is carried by some ticks and can be transferred via a bite. Later that day my mum did some research about the disease after remembering that I had been bitten by one when I was six up in Scotland, and the area is known to have ticks carrying the disease.  When reading through the symptoms she found that the majority of medical issues I have had through out my life fits with Lyme Disease.

Lyme Disease can cause a majority of problems. In late stages of the disease neurological problems can occur such as muscle spasms, memory loss, twitches etc and can cause Dystonia. I was never tested for Lyme Disease at the time as my parents did not know of the condition. The tick was attached to me for 24 hours and I developed a large rash afterwards. Testing for Lyme is unfortunately not accurate. The tests can result in many false positives and false negatives, some Lyme patients have been tested over 5 times before they got a positive result. The test is only about 30% accurate.

I visited my GP this morning with my mum to discuss this with him. We went armed with information from medical sites, and prepared to fight for a test. Amazingly we did not have to fight! My GP listened to us carefully and decided that instead of ordering the blood test he would start me on a high dose of oral antibiotics instead. I am to take these for a month and see if I get any improvement.

From what I have read if you have late stage Lyme Disease IV antibiotics are the best line of treatment and this goes on for several months. Often antibiotics do not show any positive results for months, in some cases it has taken up to a year. I know that I am unlikely to have any improvement on just one course of antibiotics and that I may have to fight to get another course of them, but I am extremely thankful that he has agreed to put me straight on them.

The information I have read is extremely interesting and whilst there is a chance that I do not have Lyme Disease and that is just a coincidence that my symptoms through out my life fit so well, I cannot help but hope that we may just have stumbled across the organic cause for my Dystonia.

 

Posted in Archive, May 2013

Inquisitive Nature

Posted on by dystoniaandme

Two of the most common questions people ask each and every day are how and why. Why do people get ill? How do we know that colour is actually green? Why is it always me? How does this work? Sometime we are not seeking an answer when we ask these question and the question has been asked in rhetorical way e.g why me. However the majority of the time we are seeking an answer. As humans, like the majority of animals, our own nature makes us inquisitive, we like to know the ins and outs of everything and anything, but if you put us in a situation when we cannot find an answer, well then we become fixated.

Which is exactly what is happening to me now. I am completely fixated on what caused my Dystonia, what turned my whole world upside down gave it a good shake and then righted it with all the pieces jumbled up! The logical side of me knows that the chances of me finding out why is extremely small, yet still I try to work it out. I sift through pages and pages of information grasping at any small shred that could contain the answer I’ve been looking for.

No matter how often I tell myself that an answer is not going to make much of a difference, I still continue my search. I am almost amused at myself for how desperate I am for an answer. For even when I find the answer, other than it giving me some piece of mind, it is not going to change much.  However until the doctors agree to help me, I know that I shall keep looking, so that if the day comes when there is no answer, I can sit back and think well at least I tried.

For now though I am going to try to reign in my inquisitive self, and remind myself to spend less time looking for something I may never find and more time enjoying the wonders around me.

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

Reflexology Session

Posted on by dystoniaandme

Yesterday I had my first reflexology session with a lovely woman. She was able to come to my house and do it, which was perfect for me as it meant if my body reacted badly to it then I was in the best place, with easy access to the necessary medication. I was hoping that by having reflexology I would be more relaxed and would be able to sleep better.

It was a fantastic session, that left me feeling extremely relaxed. I was so happy that my body did not react to the reflexology, which enabled me to relax and actually enjoy it. During the session she concentrated on areas that related to pain, my liver and my kidneys. The reason for this is that the amount of medication I am taking will not be doing my kidneys and liver any good, so by concentrating on them it should help to detox them.

I did not do much for the rest of the day as I was extremely tired from the session. In the end I went to bed around 8pm because I was struggling to keep my eyes open. Normally I would have read a book before I go to sleep to help relax my body, but I did not even have the energy to read. Most nights I do not get to sleep till the early hours of the morning and even then I will carry on to wake up 4 or 5 times due to painful spasm. Last nights sleep was amazing! I slept for a total of 13 hours and did not wake up once! I was even full of energy today which was fantastic.

I am so happy that I was able to get a good nights sleep, it made a real difference to my energy levels today. As the reflexology session appears to have had such a fantastic effect on me, I am planning to book more and see if these improvements carry on. I am extremely hopeful that these sessions will continue to have a beneficial effect.

 

Posted in Archive, May 2013

Sleep & Dystonia

Posted on by dystoniaandme

One of the things I am struggling with lately is getting to sleep and staying asleep. When I am tired my spasms tend to get worse, which makes getting into a comfortable position to go to sleep in is rather hard. Previously when going to sleep I would lie down in bed fully stretched out, however I can’t do this any more and this is proving to be an issue.

One of the symptoms I am struggling with at the moment is in my legs. I have a constant tugging sensation along with pain in my knees and thighs, which I seem to only be able to relieve by pulling my legs up. Although this does get rid of the painful sensations it certainly lessons it, however I then find it extremely hard to then straighten my legs back out again. Some nights I have had to go to sleep with my legs crossed. The pain in my legs along with the current pain in my neck caused by my new neck spasms is really impacting on my sleep.

Sleep is an important part of dealing with Dystonia. Having your muscles spasm constantly on and off through-out the day is an extremely tiring experience, which leaves you exhausted. I have often taken naps in the day just so that I have some energy to carry on fighting against the Dystonia with. Dystonia normally disappears whilst you are in a deep sleep, however when in a light sleep the spasms can appear. At the moment due to pain I am finding it extremely difficult to get into a deep sleep, therefore I am constantly woken up in the night due to spasms. This leaves me feeling exhausted still when I wake up and starts a vicious cycle.

At the moment I have taken to going to sleep with a hot water bottle under either my feet or knees to try to relax my legs, and a heated lavender wheat bag around my neck. The combination of the two is thankfully providing me with enough temporary relief to enable me to drift off to sleep. I have debated taking sleeping tablets however I am unable to do so with the medication I am currently taking.

I am hoping that by increasing the number of times I meditate a day and by starting to have reflexology done that I may start being able to sleep better. Only time will tell if this combination will help. So I shall keep my fingers crossed.

 

Posted in Archive, May 2013

Dystonia Alien Gets Creative

Posted on by dystoniaandme

My Dystonia alien seems to have come up with yet another inventive spasm for me. Now my head and neck rather violently jerk to the left whilst my mouth opens and closes making a sort of popping noise. It’s rather painful and leaves me feeling like I have pulled the majority of the muscles involved.  The spasm happens all day, sometimes l go a few hours without it and then it will start all over again, I have noticed that when I get tired in the evening this spasm happens far more often.

My mum emailed my consultant for me last night, updating him and asking him if they were any closer to knowing when I would be admitted for a week. However it normally takes a fair period of time for him to get back to us, so I am not expecting to hear from him any time soon. I spoke to my GP this morning, asking him if there was anything he could suggest I do as I am in a fair amount of pain and getting to sleep and staying asleep is becoming almost impossible. At first he tried to persuade me to try the Clonzepam again, but as it turned me psychotic the last time and had me wanting to cut my hair off I told him I would not go back on it. So he has decided that I am to up my Tramadol, which is a pain blocker, to two pills in the morning and one pill in the evening until the pain side of things settles down, then I shall go down to one pill in the morning and one pill in the evening. I am also to go back on to a medication called Baclofen which is a muscle relaxant. I had been on this previously but my consultant took me off it as at the time it was not helping me, it made me forgetful and I was on a very high dose. My GPs thinking is that because so much more of me is affected by the Dystonia than previously the Baclofen may help, if it does help then I am to increase the dose.

I am really hoping all the medication does help, I feel like I have fought against Dystonia for a fair while now without a lot of help from the medical society, and a bit of help in this endless battle would be greatly appreciated. I have not been able to get to sleep easily lately and I am waking up often in the night due to spasms. Lack of sleep is beginning to add up and being rather tired in the day makes fighting against my Dystonia alien that little bit harder.

I am a big believer that when you suffer from any sort of illness you should always explore alternative therapies to see if you can get any relief from them as taking lots of pills (like I currently am) is not good for you. When I was little I suffered from Chronic Fatigue Syndrome and had reflexology for a period of time to help. It certainly relaxed me and I always had a great nights sleep afterwards. With that memory in mind I have found a reflexologist who comes to your house and is not too expensive. I have no idea if it will help me at all but my theory is this, when you have Dystonia you are advised to avoid stress and to try to stay relaxed, therefore having reflexology done, which is a relaxing/calming experience, should provide some sort of help, even if it is just having a great nights sleep afterwards. I am having my first session next Monday and I am really looking forward to it.

I am hoping that with a combination of medication and reflexology I should be able to feel ‘better’ in myself  and have more energy to fight Dystonia with!

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