Date of UK driving licence law announced

Information
Friday 8 March is the date when the new driving regulations for people with epilepsy will become law.

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The changes are on the Epilepsy website, see the link below for all further information:

http://www.epilepsy.org.uk/news/news/date-uk-driving-licence-law-announced

This is very important information for any drivers, please check it out.

I hope this information helps 🙂

Personal Independence Payment (PIP)

Information for all disabled people who claim benefits, and the new upcoming change to our DLA and Mobility benefits system payments with effect from 8th April 2013.

When will it effect you?

Claiming PIP
https://www.gov.uk/pip-checker
This is the link to check on when you may be effected by the new Personal Independence Payment (PIP) and when you can expect to have to reclaim for this instead of the old Disability Living Allowance (DLA) which is all changing this April 2013.

Here is the information given on the Government Website of what the rates are to be –
https://www.gov.uk/pip/what-youll-get

What you’ll get
Personal Independence Payment (PIP) is paid every 4 weeks. It’s tax free and can be paid if you’re in or out of work.

It is made up of 2 components (parts). Whether you get 1 or both of these depends on how your condition affects you.

Daily living component
Daily living component Weekly rate
Standard £53.00
Enhanced £79.15

Mobility component
Mobility component Weekly rate
Standard £21.00
Enhanced £55.25

My Story

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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.

Information Pages Set Up


Hi I set up the pages last night for the information, and out lining the symptoms that can come with Functional Movement Disorder.

You can just click on the page links above, or click the links on here below:

Link – Functional Movement Disorder – Starting To Be Explained

Link – What Symptoms Does This Disorder Include?

I hope these information pages help you, your family or carers, or if you are just looking for research.

I will give more definition, and details of what each symptom comes with over the following weeks.


How long did it take you to be diagnosed, from the onset of your symptoms?

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Check out the new leaflets & published information pages

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I have posted on a few leaflets / PDF’s, and some published neurological papers written by Doctors and Consultants.

They are in the drop down “Interesting Medical Papers & Information” tab.

There are some interesting papers if you want to read up on this disorder, and things related to the brain.

I will keep adding to these pages, when I get chance. As I believe sharing information can only help us to understand ourselves more, so therefore we can become more comfortable with our bodies and our movements.

Hope they help some of you 🙂

Published Neurological Papers:
http://www.functionalmovementdisorder.com/interesting-medical-papers-information/information-leaflets/published-neurological-papers/

Information Leaflets:
http://www.functionalmovementdisorder.com/interesting-medical-papers-information/information-leaflets/

Happy reading 🙂

Unexplained Psychological Illness Linked To Brain Abnormalities

A must read for any Psychogenic Disorder sufferers!

A very interesting piece in the Psych Central, regarding how the brain in psychological patients does actually change whilst having a psychogenic episode!

That the psychogenic function difference shows up on a PET Scan even whilst the patient is, or is not, having a psychogenic episode.

http://psychcentral.com/news/2013/02/27/unexplained-psychological-illness-linked-to-brain-abnormalities

Happy reading 🙂

New Stories Added!

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Please check out all the new stories added, of some more extremely brave people who have chosen to share their stories in the aid to help raise more awareness of our disorder.

I would like to personally thank, each and every person who has and is, sharing their stories.

THANK YOU! 😀

Andrea X

Exciting Week Ahead!

This week I have a lot going on, so I have to somehow find the energy and strength to both get up early, and stay going!

Unfortunately yesterday I had problems with my blog “dystoniasuffer.com” (Dystonia & Functional Movement Disorder Sufferer). I found myself unable to get into my site as I could not for the life of me remember my passwords, though to be honest I have had it before where I have input my password and it has told me it is wrong only for me to input the same again and it work!
I thought I had backed up all my database etc, and then proceeded to delete to start over agsain. But I seem to be having problems getting it back up, and am now unsure if it will even be done.
Gutted doesn’t cover it, I started my blog on 16th February 2012. That’s a lot of pages, and hundreds of posts of information all lost if my web hosts are unable to help me and my partner bring it back. My poor partner has been trying his best to help my since last night, but fear I may have not backed up everything I needed to 🙁
So I hope you do not mind, if I do a few blog posts here. After all, it is living through the eyes of a sufferer.

Wednesday I am going to become a Nanna for the second time, whoop whoop! My eldest daughter is having her little girl by a cesearean section, her baby has been stuck across ways and breach for the last approximately four weeks.
We are all very excited, it should have all happened today but there was emergencies so she got moved along which is not the news you want to hear when you have been waiting so long!

Though luckily, I am not feeling too well today. I know we never feel well with our disorder, but as you my fellow sufferers or carers, or family members all know, we still can feel worse than our normal daily issues we have to deal with.
I am just so very tired today, I ache terribly and my head feels off kilter and my scalp feels sore. My joints hurt really bad, and my back (as normal now) is causing me a lot of pain. I have taken three lots of morphine so far today, and that is out of my allowed four doses. So maybe Wednesday I will be be having a better day. whatever happens, I will drag myself up and out and be there for her and my new Granddaughter 🙂

On Thursday I am eventually getting help for my back pains, I am going to hospital to the surgery department for 8 o’clock in the morning.
I will be having a local anaestetic injection, and the steriod epidural injection. To hopefully be given the pain relief, I have waited many months for.

I was told last Monday when I saw the head man my Neurosugeon Mr Thorne, not to get my hopes up. Which was not what I expected, and made me feel slightly dissapointed. I had expected this injection to help, but I am now informed that it is possible it may not work as I have so many problems going on! Though if I am lucky it may help, and give some relief from the pains but that I will very likely still need to use the morphine alongside.
If however I am very lucky, the injection may work and give me the pain relief in my back and hopefully keep the relief going for a few months.
At the moment it is all ifs, buts and maybes. I just have to keep hope, and believe it WILL work.

By this timme next week, I might be back to using my walker instead of having to depend on mobility scooters all the time. Start to get out and become a bit more mobile again! Please 🙂

Thanks as always for reading folks, catch you later x

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!? 

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. 

The total break of my marriage of 21 years. 

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, 

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. 

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  bits. I’m broken, my brain has memory problems mostly short term. 

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. 

I am broken, always.

I don’t really know who I am anymore

I just had to blurt this and get it out. 

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

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. 

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.
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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, …

View page »

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 🙂
    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 🙂

  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 😀

  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! 🙂 xx

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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 …

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

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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