Nominated For – National Diversity Awards 2015!

image

We have been nominated for the very prestigious, National Diversity Awards 2015. For our Functional Movement Disorder Community Group, in the Disabled section.

Yes you read that right, I was very surprised myself. Though we are an online group, Functional Movement Disorder Page, and website, we can make a massive impact to society all around the world.

There are still a couple of days left to nominate, if you wish here is the link – https://nominate.nationaldiversityawards.co.uk/Nominate/Endorse/26876?name=Functional%20movement%20disorder

As Functional Movement Disorder is such a rare disorder, it is harder for us to get people including family and friends, to understand it is real and what comes with it.

Even being put forward and nominated for the award, is yet another awareness in itself!

With our rare disorder we may only add up as sufferers in the hundreds, not the thousands, or the millions like some other movement disorders. But we are here, and we are being heard!!!

I am very proud of us all, how open we can be, and sharing our stories and expressing what we go through.

So good luck to us all, and keep raising more much needed awareness of :

Functional Movement Disorder

We are here! X

STRESS – is it a main contributory factor?

Stress can have a massive impact on both a persons brain and body, I sufferer from a condition called Functional Movement Disorder.
This is a psychogenic neurological disorder, caused by past build up of life stresses that at a certain point made my brain in effect suddenly have a disconnection of the central nervous system.


It means now my brain does not send or receive signals to and from my body properly anymore, for the bodies movements to work correctly. My brain can misfire so make it move on its own giving me weird, odd movements out of my control, or does not move when I ask it to.

Stress is one of the factors in this disorder, and it is a little like Post Traumatic Stress Disorder.

We have to learn to have a life balance where we give ourselves a break from the daily stress that we all go through, and have to find a way to keep the balance right.

I know how hard that is believe me, but it is something that society needs to start to understand.

That people are not machines, we need rest and play as well as work.

There has always been the phrase around “Work, Rest & Play”.
Unfortunately it seems that now in the economic situation the world is in now, everybody is finding life more challenging to meet their bills. To put food into their families mouths, and to keep clothes on their kids back and a roof over their heads.

We don’t all need the latest gadgets, the new flat screen televisions, the latest craze or fashionable clothes. We just want to have a happy life, and I want to help people remember to live life with a smile.

STRESS we have to learn to get it under control and go back to living instead of just existing. X

Functional Movement Disorder

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 πŸ™‚ 

 

<

p style=”margin-right: 0px; margin-bottom: 0px; margin-left: 0px; font-size: 12px; line-height: normal; font-family: Helvetica;”>

My Story

20121208-221735.jpg
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 hold my body up.

I had all sorts of problems, I have been in A&E, and in Acute Assessment Unit where they diagnosed me with Chronic Cervical Dystonia, Involuntary Movements, Vertigo and Tinnitus!

I started with Non-Epileptic Attacks at the start of April.

By the end of April I started having Non-Epileptic Seizures. They pull my face, I look like I’ve had a stroke, I cannot talk straight away after, and these can make me paralysed in all my limbs for hours at a time.

I am now registered disabled, and have to use walking sticks to even get around the house. Outside I use my three wheeled walker or crutches, I look and feel like an old woman. I also have a wheelchair for when I go paralysed for my partner to put me in.

I was diagnosed on 17th May with Functional Movement Disorder, and have recently been told I will now have it for life.

My diagnosis had been wrong! That in the Acute Assessment Unit the Doctor had diagnosed me wrongly, it was all my body starting to Mis-Function. All part and parcel of it, so many different symptoms, but only one Disorder!

Work has eventually terminated my employment as of 20th December this month, so I will be officially unemployed.

I can no longer work, as my movements and attacks or seizures can happen any time and erratically. I live in daily pain, many days I cry out even in the street. I cannot hide my pain anymore. It is hard never knowing what the day has in store for me, I just have to keep going. It’s all anyone can do.

This is the short version of my story, I wouldn’t want to bore you with the rest. As the rest started years before, and is a long story to tell.

Some if my story has started to come out in my Psychology Sessions, good or bad?

Too many equations to go into, too hard to work out and give any easy answers.

It is believed my brain has broken from the past stresses and upsets I been unfortunate enough to have happen to me. There are no written reasons for this Disorder, no one course of treatment to follow.

Every person that is unfortunate enough to be diagnosed with Functional Movement Disorder, has their own personal reason behind the whys. Also the treatment has to be tailored to the individual, to fit with their individual problems.

Hopefully on this journey of finding out, and trying to learn to adjust and live with this Disorder, I may be able to give insight or offer some small help to others with the same or similar problems. Hopefully others may even help me, I live in hope for us all.

Please enjoy my site.

Anaesthetist Appointment Today! :(


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

Not looking forward to any of it πŸ™

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

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

Connectivity Is Power

Neurons-connecting-to-other-neurons.jpg
(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 πŸ™‚

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

    Copyright Β© 2013 Dystonia And Functional Movement Disorder Sufferer Quote – Trying to raise awareness of Movement Disorders

It’s Our Functional Movement Disorder Awareness Week!Β 

image

During our week of Functional Movement Disorder Awareness, I would like to look at other things that may be part of the reason why we have this disorder.

Anxiety, Depression, IBS (irritable bowel disease), all of which I myself suffer with, can impact upon the gut. It plays a big part in our daily lives.

You may have seen, or heard before, about how the food we eat which goes into our gut can effect us. What happens in the workings of the gut, can have a connection to the brain. Changing the way the brain works, and also giving reasons behind brain inflammation or brain degeneration through the gut-brain connection.

I’ve been looking at this for a while, and I have been taking those little probiotic drinks for years, to put good bacteria into my stomach. I have a lot of stomach problems, and the drinks do seem to help a little. 

Here is a link to a study being done, relating to the gut and its relation to Multiple Sclerosis. As you know, we suffer many of the same symptoms as MS, so surely this could be a related factor to our disorder as well.

Take a look, and decide for yourself.

http://www.psypost.org/2016/05/exploring-gut-brain-connection-insights-multiple-sclerosis-42704

What are your thoughts on this, do you have problems like this too?

I Wish I Was Invisable


Sometimes I write poetry, to get my hurt and feelings out. 

The painting is also one of my own, as when I got Functional Movement Disorder I found all my artistic side 😊

So I decided to share one of my poems with others who understand.

Just click the link x

https://youtu.be/CZlBY8-UOKYhttps://youtu.be/CZlBY8-UOKY

I hope you liked it 😊

Glass Raised In The Air – But Why?

20140115-015518.jpg
It is very possible that you may have seen the above quote before, and I’m sure you all have your own thoughts and take on the story behind the words.

Here are mine πŸ˜‰

Putting the glass down is easier said than done in some cases, as the person may have no idea what the glass contains, or why they picked it up in the first place.

Psychology can be an unmeasurable science. It can be a wonder, it can be interesting, it can be mind expanding, knowledgeable and clever.
Yes, psychology is very clever.

It can also be a lot of mumbo jumbo, but it’s up to the individual to sort out what’s in their head in the end.

No matter how many questions a psychologist can ask a person, if they don’t ask the one that finds the correct answer, then the glass is left raised in the air.

Makes you think doesn’t it?

These are my thoughts anyway, at this moment in time πŸ˜‰

Did You Know??

The Brain is made up of a Hundred Billion Neurons?

20130409-220008.jpg
All those neurons fire chemical responses to one another, sending requests for all our body movements.

The brain is the most fascinating part of the body, the one part we will probably never ever fully understand.

Functional Movement Disorder, is one of the one things that may never be understood.
Why the brain can suddenly have a disconnection in its central nervous system, why it no longer sends the brain signals properly anymore from one set of neurons.

How can those one set out of the hundred billion, ever be found? Ever be fixed?

Simple answer, they cannot. The brain is a wonderful thing though which has a life and existence unknown to us, as it can find its own way of repairing or going around and fixing certain problems all on its own.
But only for certain brain problems?

20130409-220107.jpg

This is what is called Brain Plasticity, where the brain in effect rewires itself.
This refers to changes in the neural pathways and synapses, which can have cellular changes and makes new brain pathways for the brain to try to learn to work again.

But hey, this is all rather involved! So we will talk about this another time.
Or you can check it out yourself in the meantime πŸ™‚

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 …

View page »

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, …

View page »

4 comments

Skip to comment form

  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 πŸ™‚
    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 πŸ™‚

  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 πŸ˜€

  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! πŸ™‚ xx

Leave a Reply

I Wish I Was Invisable

Sometimes I write poetry, to get my hurt and feelings out.  The painting is also one of my own, as when I got Functional Movement Disorder I found all my artistic side 😊 So I decided to share one of my poems with others who understand. Just click the link x https://youtu.be/CZlBY8-UOKYhttps://youtu.be/CZlBY8-UOKY I hope you …

Read more

Aww I Hurt

Image from Google pictures. I’ve been busy all week, trying to write about my weekend away in London over the Bank Holiday weekend at the end of May. I will get it finished eventually, or maybe break it down into parts to get it posted. As it is all about mobility issues I had, that …

Read more

%d bloggers like this: