Battling the bacterial threat to modern medicine

Klebsiella pneumoniae's double cell wall means it is resistant to many antibiotics
Klebsiella pneumoniae’s double cell wall means it is resistant to many antibiotics.

Here is a link to the BBC News health site by Susan Watts Newsnight Science editor, BBC News

http://www.bbc.co.uk/news/health-20554921
Watch Susan Watts’ full report on the fight against drug resistant bacteria.

This story gives a scary insight into how bacteria is growing and evolving, faster than our treatments that are meant care for our bodies!

Having a movement disorder that constantly means our body fights itself, makes our immune system constantly low. Therefore we are at fear of picking up many of the bugs going around all the time. On a bus, a train, a tram, in a taxi, from any hand rail or door handle.

Germs and bacteria are everywhere, just waiting for our hand to collect it. Even washing hands regular does not mean we are fully protected, and there are more and more hand gels being brought out onto the market everyday to fight bacteria.

This story shows that try as we might, the bacteria are beginning to win. If something isn’t done quickly, it will end up that antibiotics become of no use to anyone.

I commend our researchers, and all the time put in from all the medical staff and scientists out there working together to look after us.
Thank you.

Living With Doubt

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Here is a quote to boost you up!

Self confidence is not the absence of self doubt.
It’s being able to live with your doubt as your companion but not as your master.

I guess that makes some sense, but I am still learning.
My learning curve looks like it may be a long one!

Have a good day folks, and a Very Merry Christmas! ๐Ÿ˜€

Functional Movement Disorder

 

   

  This disorder has such a diverse mix of symptoms, that it is incredibly hard to label it properly. 

Functional movement disorder, functional disorder, neurological disorder, conversion disorder, functional neurological disorder, movement disorder, involuntary muscle spasms, muscle spasms, pain, chronic pain disorder, chronic pain, non epileptic attack disorder, nead, fmd, fnd, non epileptic siezures, nes, epilepsy, epileptic seizures, seizures, memory loss, loss of co-ordination, balance problems, gait problems, chorea, ms, parkinsons, dystonia, functional dystonia, focal dystonia, blepharospasm, eye problems, facial spasms, jaw spasms, cervical dystonia, cd, neck spasms, muscle twiisting,  disability, disabilities, disabled, paralysis, partial paralysis, sleep paralysis, sleep aponea, sleep disorder, back pain, myoclonus spasms, and more!

There are so many symptoms, so many names, how can it all be labelled under one Disorder?

I believe we should be treated for each individual symptom, and the clumped together disorder name label actually taken away! 

That way patients will get treated for each symptom, rather than some that are left with just a label over their head and doctors who have no clue how to treat them.

I honestly believe there are way too many symptoms, just to be all put under the same label of Functional Disorder!

Thanks as always for reading ๐Ÿ™‚ 

 

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How long have you / or the person you care for, had Functional Movement Disorder?

How long have you / or the person you care for, had Functional Movement Disorder?

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Constant Involuntary Muscle Spasm!

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I implore and question any psychologist or psychiatrist , why do you believe “Talking Therapy” can help Functional Movement Disorder?

My leg has been in a constant involuntary muscle spasm for over five hours now!

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I am not sure how a person is supposed to stay positive when they live in constant pain.

With the many symptoms this disorder has, how can talking erase all the movements?

I am open to any discussion, please feel free to leave a comment.

All help will be gladly received.

Anaesthetist Appointment Today! :(


Check out my personal daily blog, today I am off to see the anaesthetist.

Not looking forward to any of it ๐Ÿ™

http://www.dystoniasufferer.com/2013/01/10/appointment-with-the-anaethetist/

Hope you all have a good day folks, and take care of yourselves ๐Ÿ™‚

Connectivity Is Power

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(The above is a picture of Neurons connecting to other Neurons)

    I have set up some forums for anyone that is interested in wanting to post questions, or chat. Also one for if anyone has information, or diagrams they feel they would like to share, that may be of use to others with our little known about disorder.

    The quote below is one I posted on my blog a long time ago, but seems very fitting now ๐Ÿ™‚

    Connectivity is power,
    Power is electric,
    Electricity is vital,
    Vitally is exciting,
    Excitement makes people talk and connect,
    Connectivity is power,
    Power is electricโ€ฆ..

    Copyright ยฉ 2013 Dystonia And Functional Movement Disorder Sufferer Quote โ€“ Trying to raise awareness of Movement Disorders

Functional Movement Disorder UK Awareness Week 17th-24th May

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It’s coming up soon, so pop it in your diaries to help promote the awareness ๐Ÿ™‚

More About Me & Living With Functional Movement Disorder

I have functional movement disorder, a neurological movement disorder where my central nervous system has at some time in the past broken. I have a disconnection, so my brain no longer sends or receives the signals properly anymore for my body movements.

I have lots of overlapping symptoms from other movement disorders, such as MS, Parkinson’s, ME, Fibromyalgia, Chorea, Dystonia, CRPS, Migraines, Athritis, and others too.

I wake every day in pain, and with my hands curled, my arms and elbow joints in agony. My legs in pain, and now my feet (mostly my left foot) in cramp. So I have tablets in a tub ready on, my bedside table to take immediately I awake.
I then rub muscle gel into all my body areas that hurt and my joints.

Along with all this I also have non epileptic attacks and seizures. I also have the drop attacks.
In fact, my body seems so greedy as if it wants to have a bit of every ailment going!

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It is very hard going, and this is my life every day for the rest of my life.

My Neurology Consultant says I will have it for life, but that it may wax and wane. So I may have good days and bad days, but will never be fully physically fit again.

My Neuro a psychologist is of the same train of thought, although he is trying to help me get my head attacks and pains a little better (but with no promises!). Unfortunately he says I will have to learn to live with the rest of my movement problems.

Favourite saying – learn to live,with your abilities, rather than your disabilities!
A good saying I think ๐Ÿ™‚

I try my hardest to stay chipper, to be the funny happy person I used to be before I got all this.
You see this time last year, I was still fine. I could still walk, I could still dance. I still had a life.
Now I live day to day, and on some of those days, I have to live hour to hour. It all depends on my attacks, and how my body decides to mess with my mind!

You see there is nothing wrong with my mind, I can think just fine. It is my brain that is broken, the machine, the cogs, that make my body work.

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I hate that I now feel trapped in a body, that I no longer have real control over.

Thanks for reading ๐Ÿ™‚

I Am Broken

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This is a blog post I just added at: www.dystoniasufferer.com
I don’t blog as often now, it’s just going back over old ground. I only blog now, when I really feel what I write is worth sharing.
I hope my words may resonate with others, and make you feel less alone. Andrea x
…………………………….

As I lay with my arms outstretched, crouched at the side of the bed.

My head down and tears fully flowing, with me sobbing and not knowing how to stop.

I am a broken woman!

I still have flashbacks, I still relive moments from my past.

I want my girls to hold and hug close, and never let them go. He hurt us too much, way too much.

Shock, pain, hurtful late night calls. Constant notes through the door, hounding me to meet up. After what he did!?ย 

The suicide threats he made, and in front of our girls!!!! Him asking to be past a knife to slit his wrists.

My daughters turmoils, the total and utter disruption to their lives.ย 

The total break of my marriage of 21 years.ย 

The following mess and trying to hold on and keep going. All that followed, the house, a roof over our heads. Trying to put food in our stomachs, how I deprived myself to feed my daughter,ย 

Holding on to a job where I was being harrassed by my boss, all whilst going through my troubled home life.

The divorce proceedings I set in place, and stood my ground. Getting some self esteem back, finding me again.ย 

FMD and PTSD are really, one and the same. I go through similar things.

Times like this I can’t stop crying, I just want out.

But my saving grace, a wonderful man I met who whirled me off my feet. Gave be confidence and showed me how to love again, made me a person who could feel again after I had shut down.

Only I’m not a full person anymore, I’m missing ย bits. I’m broken, my brain has memory problems mostly short term.ย 

But there are things that happened during my marriage break up, that I have no memory of.

Things that have happened whilst with my new partner, I have no memory of.

It’s the scariest thing, not knowing part of your life but others do.

It’s the scariest thing, having flash backs suddenly out of the blue. That interrupt and distort your day, change your feelings. Make you go so low, it’s a struggle to keep getting back up.

It’s the scariest thing, having your body suddenly turn against you. Start breaking down, not moving properly. Not moving how you ask it, or moving without you asking!

It’s the scariest thing, living in my world. Every day, for the rest of my life!

I am hurt, still.ย 

I am broken, always.

I don’t really know who I am anymore

I just had to blurt this and get it out.ย 

Real life is hard, nothing is all roses. Not in my world. ย 

But I love all my family dearly, my girls especially. They make me a proud Mum, they have moved on and are now living their lives.

My elder sister I have to thank for looking after me so well in the first weeks, with no thought to disrupting her own life and work. She stepped out and caught me as I fell, whilst cradling my girls too. Thank you sis with all my heart xxx

Me I still struggle, and probably always will. Becoming physically and I guess mentally disabled, from something that happened in your life, to change the way your brain works. Well, it’s still very hard to grasp.ย 

So yes, I have my break down days. Today just happens to be one of them, and I felt I needed to set it free.

Maybe now I can move on?

You only have to look at the tags to see all the problems, and disorders I live with. So only time will tell.

Thanks for reading as always, and take care X.

Welcome

Welcome to my site, I am a “Functional Movement Disorder” Sufferer.

I decided to set up this site to share any information and knowledge I have found, about this “very little known about” disorder.

*PLEASE NOTE THAT THIS SITE IS ALL MY OWN THOUGHTS AND INFORMATION I HAVE FOUND, PUT TOGETHER TO HELP OTHERS IN THEIR SEARCH FOR ANSWERS THE SAME AS MYSELF.

This site will grow slowly, as I gather together all the information I have already found. Along with the new information I find in my continued research, which I will put on in time.
___________________________________________________

Through researching for information on this disorder for myself, I found there to be very little out there to find.
I looked on the worldwide web, where there is information about what the movement conditions for this disorder are. Only I found nothing about the diagnosis process, or the following process of treatment and what is involved. What we as patients can expect to go through, and the walls that we constantly come up against.

The piles of forms and paperwork that we have to fill in, if we need to make claims from insurance companies, for DLA, for ESA, right through to applying for Blue Badges for disability parking, or concessionary passes etc.

The appointments we have to go through, and the sucession of follow up appointments. The different Doctors and Consultants we are required to see, and the tests we have to go through. Firstly to get to a diagnosis, then the following assessments for any claims we make. The refusals that you may have, and the following continued push to prove that your claim is your right. The ongoing battle against both your body fighting itself, and the battle to keep going through all the closed doors.
The total and utter resignation you may feel many a time, and the ongoing tiredness and fatigue.

I also trawled to a lot of bookshops, only to find that even the largest bookstores did not have any books on this condition. I even went to a main University bookstore, but to no avail.
I was also very surprised to find that it is not listed on the lists of Neurological Disorders on the Movement Disorder sites that I did find.

Interestingly, there seems to be a selection of names for the same disorder:

* Functional Movement Disorder
* Functional Neurological Disorder
* Functional Dissociative Disorder
* Dissociative Disorder
* Conversion Disorder
* Functional Neurological Dissociative Disorder
* Functional Neurological Movement Disorder
* Psychogenic Movement Disorder
* Functional (Psychogenic) Movement Disorder

All of the above diagnosis’ are in fact the same disorder, which can lead to confusion when left to look for information about the condition you have just been diagnosed with.

I hope that with shared knowledge, we can get this disorder more well-known about and so making the struggle for sufferers less, along with helping their families and carers to gain an understanding too.

Please feel free to get involved. You can comment, or you can contact me by email using the contact form.
Thank you.

My Story

I haven’t been at work since Monday 30th of January this year 2012. I had a sudden onset of head spasms, and other body spasms. I have gone downhill fast over the year. January my head spasms started. February my neck kept twisting and jerking sideways. March my legs started to go weak and wouldn’t …

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An Update On Me ;)

I can’t walk anymore without walking sticks, crutches, my wheeled walker or I also now have a mobility scooter. I have funny jerky movements, and can seem to have a tremor at times. My left leg jumps a lot, due to pulling in my abdomen, my hip or the calf muscle all spasming. My neck, …

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4 comments

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  1. Andrea

    Hi Julia yes it was the same one I was pointed to by my Neurology Consultant as well. It has a wealth of information all about the different symptoms and that come with this disorder.
    I have linked to it on the “Helpful Links” page ๐Ÿ™‚
    Unfortunately what I find it doesn’t do is go further, to give the understanding. To fill out the picture and consequences this disorder brings with it. I wanted more, to know the why and how. To find reasons, and information more than just on a medical level from one Dr who has an interest in the disorder. In fact, I was and still am dumbfounded that so few Drs have an interest in the disorder or know so little about it.
    My website is the journey from a patients view point, the diagnosis and time, years it can take. Through to the eventual start of treatment, the forms of treatment, and hopefully the outcomes that patients can look to in the future.
    I have been rather ill lately so I know my site is limited, but as many sites they take time to build and I hope it will get there eventually. With more information of the treatment and psychological journey, along with other interesting information I find that I feel may be of interest to share.
    I hope you find the site of some use to yourself also.
    Thank you for your comment ๐Ÿ™‚

  2. Julia

    Hey, have you had a look at neurosymptoms.org? It’s a website by a movement consultant neurologist and I found that very useful. My neurologist pointed me in the direction of it when he diagnosed me x

  3. Andrea

    Hi Nicola, I am so glad my site is helping you. Although I do need to just say, that I am like you a sufferer. Everything I put on this site is from my research and personal experience, I am not a medical person.
    I set this site up because there is little information for us to find, and I wanted to explain our disorder in as easy a way as I can. Without all the medical terms that can be hard to understand, and I want to help others like me.
    We as patients with this disorder, start to become specialists in it by going through it and all the information we find along our journey. We end up knowing more than our local doctors, but we are not doctors just sufferers that begin to know all about our disorder.
    I hope your appointment goes well, and that your day is a good one.
    Thanks for your lovely comment ๐Ÿ˜€

  4. Nicola

    Fab site Andrea! You site is so good I’m taking a print out to my Gp this week of all the symptoms. He’s very understanding but he’s learning about Fnd like I am. I look forward to hearing of any updates you have & I will definitely let you know if any treatment I have seems to help & of news I may find through my investigations into this mad, mad condition! ๐Ÿ™‚ xx

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FMD What’s the difference between the overlapping movement disorders?ย 

Functional Movement Disorder has many overlapping symptoms of other movement disorders, such as Dystonia, MS, Parkinson’s, Lyme Disease, Lupus, Chorea, and many, many other movement disorders.  The difference being that whilst these others are an organic brain disorder, then some may possibly shorten life. The functional movement disorder is not, it is classed as psychological …

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