Here is a great video talk, on Functional neurological movement disorders by Dr Jon Stone from Edingburgh. This is his speciality, and he has done years of research on our disorder. The slides that come with the talk are interesting, and he talks about other videos which are not shown in this talk video but …
As we all start the New Year of 2019, I would like to wish everyone the very best in both their health and their hopes for the future.
Last year was a big step forward for the growing recognition of Functional Movement Disorder, Functional Neurological Disorder, and Non Epileptic Attack Disorder. Through the joining of groups, charities, and other institutions, between all of us using the same date to make a big push for awareness we created lots of interest about our disorders.
From highlighting the different symptoms, and how patients can suffer from each symptom differently, it brought light to shine on both same suffering and individual suffering.
How some suffer only weakness, some spasms, some seizures, some fatigued, some who suffer a combination of symptoms. There are so many symptoms that sufferers have to live with.
Now there are more people talking to family and friends without feeling on their own.
From all the new and many researches being done, Doctors now talk and are beginning to believe that the disorder is physiological instead of only believing it to be psychological. This has been a major step forward, at last showing the proof from FMRI images which show differences in the brains of people who took part in the research.
We have a lot to thank the participants of these researches for, as well as getting answers for theirselves they also helped to get answers for many others.
From here we can only go forward in this exciting new time. I look forward to a future of hope for new improved treatments, and continued research to make sufferers futures easier.
Take care as always x
I am tired, I am always tired no matter what time of day it is. I drink coffee to try to wake myself up, then I drink another! Though I am still tired, always tired 🙅♀️.
Sometimes I read things and it still makes me upset, that we continue to suffer. That we have still not got to a point where there is a structured treatment set up to roll out for everyone who suffers from Functional Movement Disorder yet.
I go see my neuropsychologist tomorrow, I haven’t seen him in six months because I was ill yet again, which basically means I either was ill and couldn’t get to see him due to movement problems or if I was having injections or something else that I needed more. I’ve not had an appointment for a while, this is the longest time I have gone without seeing him. I used to feel I needed to see him regularly to talk things out, to feel safe and secure that he was helping me get better. I’ve been seeing a neuropsychologist since Sept 2012, so I’m not far off six years. I no longer feel the horrible “need” to see him, I think I am approaching a turning point. That I do not need a crutch to lean on so much, that I am stronger in that way of thinking, though seeing him at longer stretches out times I think will give more to talk about..
Unfortunately I am weaker in my illness, as you know I have Functional Movement Disorder which mostly effects my left side but I have bits in my right such as my hand, along with the other body problems it gives. I also have Dystonia in my face and cervical Dystonia in my neck. I still have my Non Epileptic Attack Disorder seizures which are back and usually worse, I have to try and not get upset and stay as calm as I can if I am on my own, though some I wake from along with the bruises. Along with my chronic pain syndrome, and chronic fatigue.
I was also diagnosed in recent years with Degenerate Disc Disease, and the MRI scan shows my back is straight where it should be curved which gives more explanation for the pain, it is not just the nerves that are trapped.
Then more recently my knees, and hands got the most terrible pains. I was seen by a Rheumatology Doctor who also diagnosed me with the 18/18 points of Fibromyalgia which explained a lot. I was also having excruciating pain in my right shoulder, and was sent for an Ultrasound showing I had burtisis with the fluid in my arm, and showed I have moderate Osteoarthritis in my shoulder joint. More pain, and nothing to stop it.
I get injections in my face, eye and neck for my Dystonia. I also get injections in my back facet joints and have epidural injections in my back to send the pain relief down for my legs.
Now with my new problems, I am lucky enough that my dr does small surgeries and he injects my knees for the Rheumatism pains.
I have go to my local hospital for guided injections into my shoulder, which may become both shoulders in the future. I’ve started getting pain in my left shoulder, as the consultant who did the guided injection he explained it is not unusual because when one side is damaged we use the opposite arm more to reduce using the painful arm. This then starts to wear this arm down and leaves a person possibly with both shoulders needing injections. They cannot be done together though because the pain that comes from having the guided injection after the anesthetic wears off is immense! I couldn’t use my arm for a good two days. But I am very aware to not over use my left arm, as I do not want that one to wear down with Osteoarthritis too.
Well I got through writing this without dropping to sleep, I fall asleep a lot while doing things. Either watching television or on the computer such as this morning! I suddenly wake up, it is the weirdest feeling. My fatigue can be hard to manage because you have to live your life, I cannot sleep through it. Though at times I would like to stay asleep in my dreams, where I am well and walk or run with the air rushing past me. Though it’s not to be, not unless I’m in my wheelchair or on my mobility scooter, then the air rushes past me even faster! 😁
Thanks for reading, and as always take care folks x
Go check out a new story from a sufferer, who no longer suffers!
Yes you heard me right, Colin Cook has been through a really tough time. Through all the lows, and the desperation of just wishing for a diagnosis so he could start to understand what he had, why, and where to go from there.
This story is really touching, and written so perfectly, that I have not changed one word. This is all Colin’s words, showing how he has fought and come out the other side. He still needs to stay aware of not over doing it, and to rest when needed. But this is a great inspirational story for us all to read, it gives hope that if we can get the right help, then we can get the right life back.
Here is his story:
I know we are all different, we suffer many, and different symptoms, but this doesn’t mean that there is not an answer out there for us all, some may just take a bit more time. There is also of course the reasoning behind why we got FMD, and this is individual to each person too. Though if we keep trying, keep going, one day we will all find our door to the way out.
Stay safe, stay strong, and stay fighting 😊
Take care folks, Andrea x
Thank you to everyone who helped with the awareness day on 25th March 2018. It was a great combined effort from each charity, and each organisation that joined together. As we all helped to raise the much needed awareness of our Functional Movement Disorder, Functional Neurological Disorder, and Non Epileptic Attack Disorder. Functional Movement Disorder were very happy to have been part of the teamwork.
As some of you may know, I started this website to help others in mid 2012 and I held an awareness week each year on the 17th May, as that was the actual date I was diagnosed.
Deciding to let go of my personal feelings and to join with the group as a whole, to push and raise awareness was hard at first, but I am glad I did!
I hope that with your continued support, we will continue over the following years to aim even higher to get awareness of our disorder known by more and more people!
Many thanks, Andrea x
It’s early days, but we do have two videos posted for our “2018 FND Awareness Day UK!
We were honoured to post both of them, as they are great both in their own ways in how they get across the message about FUNCTIONAL MOVEMENT DISORDER and FND.
That the disorder needs to be now seen and categoriesd up with MS and Parkinsons, this is a real neurological problem and needs to be treated as such.
Instead of us just being left to cope! There needs to be something more, something better set in place to try and keep sufferers pushing themselves. The hospitals could do meet up groups of sufferers in the hospital, how great would that be not to feel so alone in all the agony of painful movements. Plus those that have become disabled, how great to feel a part of the real world! From these meet ups the neurology consultants could learn a lot, watching the interaction showing that sufferers don’t want to be left behind. Medical professionals of different types could learn from these groups. Psychologists, psychiatrists, occupational therapists, and of course the neurology consultants. It would be a type of experiment, that would hopefully take sufferers out of depression at least.
I will look and try to get more videos posted in time, but for now please feel free to watch and share 👍😊
Hi there to everybody who suffers, or looks after someone who suffers with a Functional Movement Disorder, or a family member or friend. Then this is a shout out to ALL OF YOU 😁
Today along with six other organisations and charities, we are doing our best between us to raise as much awareness as possible of FND / FMD / NEAD, and all the symptoms that come with it.
So if I could ask you, the sufferers, the carers, the friends and loved ones. Will you join with us and share everything you can about this disorder, because it needs to be known and understood by more of the medical profession than who knows it at the moment.
You can share anything from this website, any information that can help to teach others will be great. So I thank you in the hope of your help, and remember, you can continue sharing as long as you want. One day for a big information push, but a small push here and there continuing throughout the year will be just as great. 😁👍💕💪
#Voices4FND #Voices4FMD #Voices4NEAD
Functional Movement Disorder & @FMDMovement are delighted to be joining 6 other FND/NEAD Organisations across the UK in joining together for ‘FND Awareness Day 25th March 2018’. During this period we hope many people will join in sending in short videos using hashtag! #Voices4FND
Please see the attached poster for all details, this poster can also be printed out for you to post and help in our awareness!
i hope,that some of you join in the awareness, even by. Posting on your own personal page. All awareness is great, so,go,for it! X 😀
Go check out the new neurology paper I found whilst researching, showing that we are not being forgot, but research is still being pursued to find ways to help us! 😊 👍
Just click to find out more!
AS some of us suffer from Functional Dystonia, this can be really helpful. additionally anyone who suffers from the involuntary muscle spasms, this may help answer questions for you too.
Here is a link to The Dystonia Society website, that has the link to Dr Tom Warner.
He has very kindly answers lots of questions, and gives great answers in an understandable way.
Here is the question list, and time points you will find them.
Please take time out to read our new sufferers stories, and catch up on the others.
We have many brave people happy to share their stories, to give insight to raise awareness of our rare movement disorder. To help both other sufferers, their families and friends, but also the medical proffessionals that know very little about it too.
We are here to try to get our stories out to the world, to make the world know about Functional Movement Disorder, and what we go through, what it does to us.
We exist through some of the most painful spasms, head pains, difficulty breathing, unable to walk, having memory problems or foggy brains. With aching limbs, inflammed muscles and joints, and many other symptoms.
Living with a chronic pain syndrome, functional dystonia, involuntary muscle spasms, and from all the other medical problems is not easy, which then gives us chronic fatigue. This is a neurological movement disorder, which should be known about as much as MS or Parkinsons, or all the other movement disorders out there.
Please share, and help raise awareness with us during our awareness week.
Many thanks in advance,
Andrea – I am a sufferer!
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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 😉 Putting the glass down is easier said than done in some cases, as the person may have no idea what the …
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