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

Anaesthetist Appointment Today! :(


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

Not looking forward to any of it :(

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

Hope you all have a good day folks, and take care of yourselves :)

The Road To Diagnosis

Please note: I live in England, this is from my personal experience. Others may find the process is done differently, and times and amounts of appointments may vary. As this is a very individual disorder, for each person that has it. I hope that this at least gives an idea, of the process and some hints to help you in your journey.

The diagnosis of Functional Movement Disorder, can take many years to get to. This is due to the overlapping symptoms, of many other Movement Disorders. It is a time of constant questioning, and looking for answers.

I personally, have had some spasms and things happening to my body going on for years. All named different things, and never looked at as a whole. It took me many illnesses, many visits to my GP Doctors, and a few visits to the A&E and Acute Assessment Unit Ward at the hospital.
In the end, having broken down from pain and confusion in front of my GP Doctor. We eventually talked through all my ongoing problems, and the things that had gone on in the past. This in turn, eventually persuaded my GP Doctor to refer me to see a Neurology Consultant.

You see sometimes you have to push it yourself, there is not always someone else to do it for you.

The person that knows your body the most, is YOURSELF.
– You know when it seems to be going wrong.
– You notice the changes.

The Doctor only knows if you make an appointment, you have to make yourself seen and heard. If you are seen in a surgery that has more than one Doctor, you may also have the problems I had where I saw 7 different Doctors in the year. This of course means you have to re-tell your medical history over and over again, and there is no one Doctor to keep up to date with you on a personal level.

There will come a point where your notes will begin to show a pattern, that you have been seen many times. Seen about unexplained symptoms, or the same symptoms several times but never resolved. Or about points in your medical history notes, that becomes noticeable they can start to link together over time.

Once you have reached this point, and are now referred to be seen by a Neurology Consultant there will be a wait for your appointment to come through.

My advice would be to start taking notes of what your body is doing, there are many different ways you can do this. Here are a few ideas:
* Write it as bullet points
* Write it as a journal
* Start up a blog as I did
* Note main days or times, anything out of the ordinary that makes your movements happen and become unusual
* Get your partner or a friend to take videos of some of your movements, try to capture the different movements that happen to you

Anything that you can note down, or videos burned to a disc that you can take to show your Neurology Consultant is useful.
It will help your Consultant to see your different movements, and how you react. If you take in notes, or a journal. It will not only help the Consultant as you will be able to leave them for your Consultant to look over after you have gone, but will help you during your appointment to use as your reference when explaining what happens to you.

Having a piece of paper, a note book, printed out blog notes, these give you something to physically look at as the first appointment is nerve racking.
Your not sure what is happening to your body or why, and you are meeting a Neurology Consultant for the first time that is going to make a big impact on your future life if they are able to diagnose you.

The Consultant will ask you to walk across the room, they will get you to sit and do tests for you to touch your nose, check your reflex responses etc.

Note: DO NOT EXPECT A DIAGNOSIS ON YOUR FIRST APPOINTMENT, YOU MAY HAVE A FEW APPOINTMENTS BEFORE A DIAGNOSIS

The Neurologist will probably not speak too much, they will let you do the talking. They need you to explain everything you can about how you feel your body has changed, and what movements you are now displaying.

All through this first appointment, the Consultant will actually be assessing you. They will be listening to you, watching you and taking everything in.

You may be referred by your Consultant for tests, blood tests, and scans. There are many different scans that can look for different things, so you may be sent for more than one type of scan. You may not be sent for any.
If you have had a recent scan, they will most likely be able to use that one either.

You may have many tests and scans, and you will find that they all come up empty. They show nothing, no results. This is one of the indications that there is no “Organic Brain Disease”, and that it is therefore a “Psychological Disorder”.

This can leave a patient feeling very distressed at the lack of test results, that there is nothing to show for all the pain and movement spasms and upset. Unfortunately it comes with the disorder, and we are told that the disorder can come from past stress and upset at some point that we could not deal with at the time it was happening.

My Neurology Consultant (a Movement Specialist) explained, try to think of your brain as a computer. That your brain (computer) still has all the hardware, but the software is out of date and has begun to slow down. That with a computer you can defrag it, all the files that you delete over time leaves spaces. When you defrag your computer, those spaces all get pushed back together and so frees up more space on the system to continue working at a better rate or speed.

This is where the Neurology Psychologist comes in, a Psychologist looks at how the brain works and why it does what it does.
You will probably be referred to be seen by a Neurology Psychologist, and they will firstly assess you and ask if you wish them to help you. There is no pressure, it is a patients choice.

As I am already going through the process of Psychology Treatment, in my blog I have put up pages to explain what happens. I will copy them to this site and add the links when I have them ready.

PLEASE NOTE: I AM NOT A MEDICAL PERSON, I AM JUST A PATIENT SHARING INFORMATION.


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.

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.

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 :)

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.

20121229-113123.jpg
I hate that I now feel trapped in a body, that I no longer have real control over.

Thanks for reading :)

The Start Of Functional Movement Disorder Awareness Week

As the start of our awareness week is here again, we need to push our awareness as much as we can,

The more we share, the more people see, the more questions are asked, and the more understanding of our rare movement disorder is known and learnt about.

  

Share, because we care. This disorder can strike anyone down, at any time. We live a life of stress, pushing, and ongoing hardship and upset. 

Things from our pasts that we block out, stress that we pretend hasn’t happened and pushed aside, boxed away. But we all know things can catch you unexpectedly at any time, a flash from the past that upsets you when remembered. I guess it can be just a little like that, but this movement disorder is too hard to explain in any east way.

Read the stories of the people who live with it, read my story as I’ve progressed. Learn and share the information, even mention it in passing the next time you see your Drs. Let’s raise the awareness, of Functional Movement Disorder.

Thank you 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

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 :)

Did You Know??

The Brain is made up of a Hundred Billion Neurons?

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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?

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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 :)

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 »

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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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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 …

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Never a Give Up!

  Check out my new post on my blog at: www.dystoniasufferer.com Where I talk about not giving up on fighting to have all your symptoms checked, and not to let the Drs tell you everything is Functional and leave you to just live with the problems. If you believe there is definitely something wrong, and …

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