FND MAGAZINE
Vol. 1, Iss. 1 April 2018
A FUNCTIONAL NEUROLOGICAL DISORDER PUBLICATION
COVER STORY
FOUNDING
HOPE
THIS ISSUE
H
COVER STORY
DOCTORS NOTE
HEALTHY LIVING
Founding Hope
Professor Mark Edwards
Eat Well
ope is the driving force for Bridget Mildon in navigating the complex world of Functional Neurological Disorder (FND).
F
or many people the journey to receiving a diagnosis of FND is a long and difficult one.
W
ith FND, there are all kinds of daily challenges - how to do things, how to go places, and where to spend your precious energy and focus.
MIND | BODY | SOUL
FAMILY
RESEARCH
Healing Takes Time
FND Parenting
Heart Rate Variability
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ith FND, there are all kinds of daily challenges - how to do things, how to go places, and where to spend your precious energy and focus.
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ith FND, there are all kinds of daily challenges - how to do things, how to go places, and where to spend your precious energy and focus.
A
study looking at how well the brain is regulating emotions by looking at the heart in those with Functional Disorders.
Cathy O’Brien editor-in-chief
It is both a privilege and milestone as Editor in Chief of the FND Hope E-Magazine to present our first edition. When I first met Bridget, this had been a long held personal dream in amongst all of her other projects. As Editor, it has been challenging in creating an informative and community focused publication that holds interest for patients and their loved ones, carers, physicians, allied health professionals and more. I would like to take this opportunity in thanking everyone who has been involved in making valuable contributions to our first issue, and I warmly welcome further contributions from our FND community. If you would like to contribute to further issues of our E-Magazine, there is more about how you can submit on page 34. This is a publication for you and we welcome everyone to be involved. At FND Hope your story is important to us, so please don’t be shy in sharing. I have a little saying of mine “Don’t be ashamed of your story. It WILL inspire and empower others.” In this issue we get to know FND specialist and researcher Professor Mark Edwards a little more and we find out about the history and future of FND Hope International with founder and CEO, Bridget Mildon. Nina Dees writes a lovely piece about healing and some great tips are shared on healthy eating by Alison Hayes. Stephanie Bradley discusses her journey of navigating motherhood, how parenting can be different for the FND patient and helpful tips for other new parents. International FND Awareness Day on April 13th is now upon us and we look forward to hearing about your celebrations and how you were able to raise FND awareness. Also, don’t forget you can update your facebook profile picture with a facebook frame, there are lots to choose from for every country. You can find out how to do this on your FB support groups. This can be a great way to start the conversation #LetsTalkFND with others about living life with an illness that is still lacking in recognition, education and awareness. I hope that you enjoy reading our first issue as much as we have enjoyed producing it for you. I would love to hear from you in future issues where we will have a ‘letters to the editor’ page and you can submit your message to ezine@fndhope.org Until next time!
Cat
Letters to the Editor Join the discussion. Do you have a comment to share from this April 2018 issue? Or share your story in our next issue available July 2018.
Next issue: • Have you had an experience where you advocated for yourself or someone else living with FND? • Are you a young person living with FND or a parent of a young person living with FND? Share your story in 300 words or less and it could be featured in letters to the editor in our July 2018 issue.
Thank you
to our many
contributors!
Cathy O’Brien • Gloria Campos • Alison Hayes • Julie Wright • Eilidh Ellery • Irene Coleman • Stephanie Bradley • Elizabeth Smith • Sal House • Grace Fry Ranilla • Professor Mark Edwards • Kimberly Legault-Forty • Isobel Williams • Dr. Liat Levita • Bridget Mildon • Nina Dees • Professor Markus Reuber • Dee Mayne •
Founding
HOPE By Grace Fry Rannila
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ope is the driving force for Bridget Mildon in navigating the complex world of Functional Neurological Disorder (FND). Bridget recalls a time not so long ago after being a patient diagnosed with FND when most doctors had little information or awareness about functional symptoms and suitable treatment programs for it. Information was often outdated and inaccurate. When communicating with other people who suffered debilitating FND symptoms, there seemed to be a consensus that there was a lack of understanding by medical professionals on how to treat FND patients. Many individuals including Mildon were sent home without clear explanation of what FND was or a treatment plan, causing great distress and confusion for the patient and their families. Like many FND patients, Bridget felt completely alone and trapped by a poorly misunderstood disorder. As Bridget lay in a hospital bed in 2012, she knew this had to change. Bridget met Niki Hamilton, a UK resident, on Facebook and together they spent a great deal of time collaborating and searching for research papers for a better understanding of FND. Late one evening, Bridget put her new understanding to use by creating the first FND patient based website. After working through the night, she saw a post on Facebook suggesting the need for a patient based FND website. Bridget shared with Niki the new fndhhope.org website link. Soon after Niki then shared the link with other FND patients via Facebook. On the morning of April 13, 2012 the FND community came together like never before; offering suggestions on what else could be added to the website. Fndhope.org ignited great hope in others and created a buzz of ideas shared across the burgeoning FND community. Bridget’s Scottish friend, Kez Malloch, remembers, “The day it went live was amazing! ... It meant a massive change for fnd.” For the first time FND patients had a clear public platform to explain FND from the perspective of those experiencing the symptoms and a place to dispel the myths and stigma that had accumulated over the course of many years. Patients clammored for this chance to be heard and began to share their stories for the first time in an open public setting.
"The day the website went live was amazing. Since then via the page and the Facebook group, so many people have been helped and supported through their health challenges..." –Niki Hamilton
Not long after launching the website, Bridget was re-diagnosed with Sneddon’s Syndrome but it didn’t stop her or others from forging ahead and registering FND Hope as a US charity with the mission of promoting awareness of functional neurological disorder, supporting affected individuals, and advancing research for the prevention, treatment and recovery of FND. Though the grassroots movement hasn’t been easy, Bridget believes she is on this life journey for a reason - to make a difference in other’s lives. Since starting the organization, Bridget has become a prominent voice as a patient advocate, speaking at conferences in the United Kingdom and the United States, collaborating with teams of specialists to challenge terminology and diagnostic criteria for FND, and more. Bridget’s contributions are highly regarded and recognized by leading FND specialists and many allied health professionals; however Bridget states, “I knew very quickly that I may have put the wheel in motion but it was the work and passion of others who would be the driving force of change.” Many dedicated patients and patient family members have joined her in fighting for this mission and together have grown FND Hope into an international organization, with registered charities in the UK, led by FND Hope UK Executive Director Dawn Golder, and Australia, led by FND Hope Australia President Dr Katherine (Kate) Gill, and represented in the Netherlands by Marieke van de Ree. Bridget is quick to say that the growth of FND Hope is indeed, “a concerted effort of a small army of 30-40 amazing international volunteers.” They all work together to build and grow FND Hope across borders and around the globe, affecting thousands of lives for the better. Today, FND Hope is an organization that is leading the way in advocacy and
awareness for patients with functional disorders. FND Hope has established many firsts, such as creating the world’s first Scientific Registry for FND research, in collaboration with the Genetic Alliance. The dynamic volunteer team has also organized petitions, summarized research papers for the patient understanding, coordinated and hosted webinars with FND specialists from around the world, managed many social media platforms and now launched the FND Magazine. The FND Hope team is also geared up to support more fundraisers in advancing the mission of the organization. Like all charities, FND Hope is reliant on donations to support its work. To date, all work has been done by volunteers with a shoestring budget. To continue to grow the reach of the organization, they will need to grow the resources to support the numerous advocacy efforts. One of the most important things FND Hope has done, and continues to do, is challenge unsupported stereotypes and bias. "There continues to be many specialists and clinicians who are not familiar with the term FND, how to diagnose or provide treatment for this common disorder", states Bridget. Bridget Mildon and the FND Hope team will continue to partner and collaborate with medical professionals and others in tackling a myriad of important issues and together they continue the journey in delivering hope to all of us affected by FND. Bridget says: “It is very humbling to witness strangers from all over the world uniting together and advocating for themselves and one another. We have truly become a functional family.�
FND SPECIALIST SPOTLIGHT
PROFESSOR MARK EDWARDS Movement Specialist at St George’s, University of London Atkinson Morley Regional Neuroscience Centre.
A note from the doctor
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or many people the journey to receiving a diagnosis of FND is a long and difficult one. One of the most common things people say to me once they have received a diagnosis is how relieved they are. This is not because a diagnosis of FND suddenly makes symptoms disappear. Instead I think it is at long last a validation that symptoms are real, and not only that, but there are in fact many other people with these symptoms. All of us have an expectation when we go to see a doctor: that he or she will try to provide us with an explanation for our symptoms. We understand that this is not always easy, that we may need some tests, that maybe we will need a referral to another doctor, and that maybe there will not be an explanation for our symptoms despite all of this. However, I don’t think any of us would expect that the genuineness of the symptoms we experience might be questioned. Unfortunately, many people with FND get the impression that this is what they are being told by doctors - that the symptoms are not real, are put on or imagined. This is often a very traumatic experience for people with symptoms
and their families. After all, how can you prove your symptoms are real? This is particularly the case for symptoms that are not visible, such as pain, fatigue, memory problems or loss of sensation. One of the most important things I try to explain to people with FND that I see is that while their symptoms do have a different mechanism than structural or degenerative neurological diseases like strokes or MS, this does not make the symptoms any less real or potentially disabling. As the mechanism is different it does mean that the kinds of treatments that mine help are different than for stroke or MS. These treatments can be a variety of things depending on the individual person and can include cognitive/ psychological treatments in some people. However, at no point is the truth of the symptoms themselves in question. FND is one of the most common reasons that people will seek help from a neurologist. You are not alone in having these symptoms, and there is hope they can improve.
–Professor Mark Edwards
"There are too many people for whom there are currently no options at all for treatment and that is something I would love to be able to change " -Professor Mark Edwards
FND SPECIALIST SPOTLIGHT
Professor Mark Edwards Interview By Cathy O’Brien.
in terms of treatment? Why was the whole process so horrible, so non-therapeutic? I became convinced that it was possible to do something better. And at the same What piqued your initial time I became fascinated by what processes could be happening interest in FND? in the brain to cause the severity For me, it was the experience of problems people with FND of training in a specialist movement suffered. After that‌.. I was hooked! disorders unit where most of the people we were seeing had seen Is there one case in particular multiple neurologists before and that stands out and were coming for a "final" opinion. I thought most people got excellent inspires your dedication in care, but there was a consistent researching and striving for group of 20-30% of people where answers for FND patients? something different happened. There are so many really... They often left the consultations the people who stand out and confused and upset, usually without any plan for treatment. Often push me to do more are mostly the doctors were also angry and those people who are stuck with stressed by the encounter. These symptoms despite their own people all had FND. I became efforts and those of treating interested in what was happening doctors and therapists: there are here. Who were these people and too many people for whom there what was actually wrong? Why are currently no options at all for did we not have anything to offer treatment and that is something I would love to be able to change.
Above: Laura Cordell, Professor Edwards, and Duncan Peacock attend an FND Hope UK workshop organised with NHS England to discuss the Transformation of Neuroscience Services for FND
What would that be and why? In one word: understanding. Everyone knows and accepts that medicine cannot explain everything and cannot fix everything. However, it is reasonable to expect that if you are ill, then you have people to go to who will offer support and help to the best of their abilities. However, the experience of many with FND is that when they make contact with the healthcare system, after an initial flurry of concern and investigations, there is no care or support. Even worse, there can be rejection and even hostility. This has to change. I do believe this is possible, and I have seen
major changes in the past 10 years, but there is still a long way to go.
Tell us a little bit about yourself when you are not working - what do you do to relax & unwind? My time at home with my family is very precious indeed - children are wonderful at forcing you to switch off and do something completely different. Currently, that involves a lot of Lego and like all parents it would seem that Prof. Edwards has probably experienced the pain that surpasses all other and that is stepping on the one piece of lego missed in the clean up!
Eat Well with FND
“EATING WELL WHEN YOU HAVE FND IS A VITAL PART OF YOUR TREATMENT PLAN. AS IMPORTANT AS ANY OTHER REHABILITATION OR TREATMENT PROGRAMS THAT YOU MIGHT BE PARTICIPATING IN. THIS CAN FEEL INCREDIBLY OVERWHELMING ON TOP OF EVERTHING ELSE.” –Alison Hayes shares her tips.
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ith FND, there are all kinds of daily challenges - how to do things, how to go places, and where to spend your precious energy and focus. Food is a mainstay in life, we need it to fuel our bodies for wellness, and it often requires preparation and planning and quite often takes energy and concentration. Instead of counting calories or following restrictive diets, let’s focus on the positive and simple ways that we FND’ers can have healthier diets. Food that provides us with the vitamins and nutrients we need for sustenance in living the healthiest life we can. For a lot of us, weight gain and the inability to exercise are big issues. Our symptoms are often unpredictable and interfere with our day-to-day living. Some of us have found that we have vitamin deficiencies, or that more of certain nutrients can help improve our symptoms. Overall, eating healthier improves the quality our lives. So what do we do? We need to think and plan to make those trips to the grocery store as helpful as possible. The first thing to incorporate more nutrition in our diets is in food preparation. What part of food preparation is most challenging to you? I know that for a long time cutting and dicing required concentration and a steady hand, and sometimes were likely to set off my symptoms. Anything cooked on the hot plates were too big a risk for me. I didn’t feel I could safely pour out boiling water. I worried that my movements would become worse if there was anything on the hot plates that required cooking quickly or consistently. So I avoided this. I made dishes that were less time-sensitive like stews as opposed to stir-frys, and made dishes that didn’t require pouring such as rice, quinoa or couscous as opposed to pasta. I started using frozen vegetables that were already cut instead of fresh. When I can, I make meals in the slow-cooker or microwave. I buy
meals that are prepared or semi-prepared, and then put them in the oven. I know my personal limitations - what I can and can’t do on a good day or a bad day, and I do my best to plan accordingly. Once you know what you are confident in doing, you can find recipes that work within your needs. The internet is your friend in this, you can google many recipes to suit your meal plans. On low-energy days, you can search out new recipe ideas and that gives you something to look forward to! Think about what food you should be eating and the nutritional value. An apple is better for you than an apple pie. An apple pie made from scratch is healthier than one that’s factory made. If you can see and recognise every ingredient in something you buy, it’s more likely it will have some nutritional value. Vegetables and fruit are healthy and generally underrepresented on most people’s plates. The less processed food is, the better it is for you. In the grocery store, frozen can be a better option than fresh, as supply chains tend to be long, meaning those ‘fresh’ fruits might be several weeks old, while frozen fruits and vegetables are generally frozen within days of being picked. Frozen food also lasts longer, and doesn’t have a few days expiry date. The other advantage to buying frozen is that they are often pre-cut and ready to go, so that will likely save you energy and time. Generally I recommend buying one vegetable per bag, and check that there are no added ingredients. Whole grains are much more nutrient-dense than ‘white’ grain products, which are often overly processed. Brown rice is healthier than white rice for that reason, while whole wheat bread is a healthier option than white. Think about what grains you currently eat, and start exploring healthier alternatives. Generally the population of the developed world are getting plenty of protein, so the focus with eating meat is about quality rather than quantity. Avoid or minimize the amount of fat in your meat - pick the leanest varieties as much as possible. Chicken and turkey are often healthier than red meat, so consider substituting ground turkey, chicken, or pork for ground beef. Try to use meat more as a flavor enhancer than the center of the meal, which can save you money and
help you eat healthier. Fish is generally a very nutrient-dense option, so consider adding fish to your diet as well. When possible buy wild-caught salmon as opposed to farmed (more protein, less fat), and ideally the seafood you eat should be ethically sourced (dolphin-safe tuna, etc). Beans and legumes are another wonderful sources of protein and healthy carbs, so please consider adding these to your dishes. The more varieties of beans and legumes, the better! When buying beans or legumes in a can, check the labels as they often include salt. Try to avoid too much salt and where possible choose the lower-sodium content. The healthier your ingredients, the healthier your dishes! Just reading your labels and choosing low salt, low sugar, and high fibre options will help you gain more nutrition in your diet. So try to focus on finding the healthiest ingredients for meals you prepare, and make sure you enjoy what you’re eating! Food doesn’t
have to be boring, you can be very creative with simple healthy ingredients. Healthy food when you are on your own and cannot prepare meals: When I really can’t handle food preparation, I choose the frozen meal route for a while, and I still do occasionally when I am unwell. I read the labels for minimal salt, sugar and fat choosing entrees with the healthiest options. By following the same rules I mentioned above, I primarily focus on whole grains and vegetables. I look for keywords like brown rice, whole wheat or rice-based pasta, and for lists of vegetable ingredients. I’ll often pick the vegetarian meals,not because I am a vegetarian, but because meat isn’t necessary for every meal, and I often find that the vegetarian options have a greater variety of vegetables. By not needing to stock up on individual ingredients you save money, time and energy, and it’s definitely more affordable and nutritious than ordering take out. Always make sure you check the ingredients, and read your labels!
Breakfast scramble: INGREDIENTS 1 egg sml chunk frozen spinach
Dump-and-Bake Healthy Chicken Parmesan INGREDIENTS 6 small boneless, skinless chicken breast 16 oz marinara sauce*
1 tblsp diced onion
to taste Italian seasoning basil, salt and pepper,
1 tblsp shredded cheese
1/4 cup grated Parmesan cheese fresh mozzarella, sliced*
Break egg into small to medium sized mug. Add spinach. Use fork to break up spinach(if necessary) and stir into egg. The liquid egg should help melt and break up the spinach chunk. Once they are well mixed, stir in the onions and cheese. Microwave for about 2 minutes, (microwave strengths vary so experiment if necessary), until egg is solid throughout. Note: -The smaller the mug, the more quickly the egg cooks. If the mug is too large, the egg doesn’t cook through. Be aware the scramble roughly doubles in size while cooking. -variations can easily be made using salsa,(about 2 tablespoons), different vegetables, cheeses or meats. Let your imagination run wild!
*Healthy Substitutions: Use canned crushed tomatoes for marinara sauce, and use whole wheat spaghetti. Bonus points if you use skim-based mozzarella instead of whole milk! Spray a large baking dish (about 9-inch by 13-inch) with cooking spray. Preheat oven to 425º F. Spread half of the marinara sauce in the bottom of the dish. Add the chicken on top of the sauce. Sprinkle chicken with Italian seasoning, salt, and pepper, to taste. Pour remaining sauce over chicken. Cover with foil and bake at 425º F, for 20 minutes (30-35 minutes for larger chicken breasts). Remove foil, place mozzarella slices and grated Parmesan on top of chicken. Return chicken to the oven (uncovered) for an additional 10 minutes, or until cheese is melted and chicken is fully cooked. Serve over pasta.
H TAKES TIME
ealing By Nina Dees
E
veryone’s brain injury is different. But there is a commonality to the experiences we have had as a result of
our injury.
I met an amazing woman at the Stanford Neurology Department recently and we struck up a conversation. She had overcome so much more than I, with brain surgery and the resulting rehabilitation treatments. She was a delight to speak with. As we chatted, we had both had similar experiences, with regard to the unexpected series of reactions to regular daily occurrences that people with brain injuries experience, yet are textbook symptoms. She asked if I would write my experience for this blog and share my experiences. My head injury resulted from a fall on a slippery floor, nothing as dramatic as a sports injury or a car accident. In thinking back, it was not the first “bump on the head” but as you may know each head injury is compounded by the previous ones. As I recollected much later, I had fallen off a ladder twice before, ran from a robber into a pole (true), and never sought treatment for any of these. Head Injury Number 4, I thought was, once again, insignificant. I drove myself home and immediately went to bed. The wrong thing to do. The next morning as I was driving to work, my vision was coming in strobe-flashes, rather than a continuous stream. I knew I was not ok and went straight to the hospital. They saw me immediately & determined it was a concussion, to take a couple of days off. The ensuing experiences that I was not familiar with, eventually resulted in my having to take 7 months off work to rehabilitate. Here are my experiences that I later learned are common to brain injury patients and the ways I coped, and eventually healed. The point is, healing takes time.
I couldn’t remember anything, even a 5-digit sequence. My sleep pattern was disrupted. Bright flashing lights caused intense pain I couldn’t handle loud noises. Music was too complicated. I couldn’t remember words. I couldn’t think or plan logically, what I needed to do on any given day. My speech was slow and halted, as I was trying to retrieve elusive words and thoughts. I was frustrated with myself and wondered if I would ever be normal again.
My challenges were many, and everything resulted in bad headaches plus the inability to “think”. The list sounds simple but ponder the inability to think, plan, and do a task. Work was not possible. The neurological testing showed that when I was stressed or frustrated, the symptoms worsened, and negatively impacted what I was trying to do with my brain or to perform simple “thinking”. Here are some things I did to help myself heal: I kept a clipboard with me at all times to write my notes of what I needed to do, crossing off what I had completed, and keeping track of what was yet to do, from one day to the next. For me, the scent of fresh flowers was extremely therapeutic. I love flowers. So I had fresh flowers in every room. Even the sight of their beauty was a feelgood. Do feel-good activities. I intuitively found repetitive movement, requiring very little thought very soothing, I gravitated to painting (things not paintings), weeding, sewing. I went for walks, a route that was routine and familiar.
Instead of anxing about only sleeping a few hours a night, I found activities to be busy. If I found myself unable to escape flashing lights, I would pull off the road & lay back with my eyes closed, until the pain went away. I also took deliberate deep breaths to calm the pain. When I was at the classical music recital, and felt the pain from the music patterns, I just had to leave even though the musicians might have been offended. When I couldn’t retrieve words, I tried to explain what I was trying to communicate in another way. The most important thing was I had to be kind to myself. I had to be gentle and tell myself that in time, I will heal. I did. My message to you, no matter how severe your injury or condition is, to be patient with yourself. Do the things you can do and do not become angry with yourself, with those around you, or with life. You will get better, maybe slowly, but you will notice thinking becomes easier. The pain will subside. Healing takes time.
A
Patient PERSPECTIVE
I
was not feeling well Tuesday and by evening I was in excruciating pain. My husband thought we should go to the ER. I was in so very much pain yet the thought of going back to a place that I felt had not handled me well when I first became sick, well I did not want to put myself in that environment again. I ended up having to go because the pain was more than my body could handle. When we arrived I was not looking forward to being there...as many of us would feel. The first nurse I did not feel much compassion from. However, my husband was there, and I was getting that support from him. Then, the doctor came in, and it was the same doctor, the first doctor that would have seen me when my body stopped functioning in September 2016. When I saw her instead of fear of being there and the feeling of anger because of the care I felt I received before by many, I was able to see her differently. That is what this time since being sick has shown me. This doctor was able to help me this time. After doing a ct scan she told me that I had kidney stones.
By Kimberly Legault-Forty
My husband and I were able to share with her our journey since the first time she had meet us on that day, Wednesday, September 28th. She listened. Her response was not a lot, and that is ok. She was glad I was doing so much better, and so were we.
I have learned, and I have grown in many ways since that Wednesday in September. One of the things I have realized is that people can not give us what they do not have. I believe when I truly recognized this it was then that I started my healing journey in so very many ways. This doctor did not know how to help me before. However, she did this time, and I am grateful. I have learned if I need help in finding answers, and the person I am with cannot help, that is okay because I will continue to find someone who can. Today I can say I am grateful because having to take the step back to a place I did not want to go. It was not as fearful as I thought it would be. It was healing for myself and I believe my husband also. Remain hopeful because we never know, that hidden blessing may be closer than we realize.
Research
Isobel Williams, Dr. Liat Levita, and Prof. Markus Reuber Academic Neurology Unit and the Department of Psychology, The University of Sheffield.
Heart Rate Variability in patients with Functional Neurological Disorders INTRODUCTION Functional Neurological Disorders (FND) have long been assumed to be caused by emotional difficulties or traumatic experiences, although FND feel like a very physical problem to many people with this disorder. Yet, despite being as common as Multiple Sclerosis, relatively few scientists have studied emotional difficulties in people with FND. For this reason, we carried out a series of scientific tests to find out how well the brain may be perceiving, expressing, and regulating emotions in people with FND. One way of studying how well the brain is regulating emotions is to look at the heart. The heart is controlled by the brain, and patterns in heart rate changes can give us clues about emotion regulation. A healthy brain capable of effectively regulating emotions is also able to flexibly control the heart in response to different demands, for example to speed up heart rate when there is something threatening happening and to slow it down when the environment is safe. These changes create Heart Rate Variability - which can be measured. In addition, other scientists have previously shown that Heart Rate Variability reduces when an individual is stressed and increases when they are more relaxed again. We therefore predicted
that patients with FND would have less variability in their heart rate than healthy volunteers if FND was associated with difficulties in emotion regulation. We also predicted that people with lower variability in their heart rate would experience greater levels of emotion dysregulation (for example often having overwhelming feelings or not knowing what they are feeling) as well as more symptoms of psychological distress.
METHOD We invited twenty-six patients with a confirmed diagnosis of FND and twenty-eight healthy volunteers to take part in our study at the University of Sheffield Psychology Department. All participants had their resting heart rate recorded for five minutes, and completed questionnaires asking them about their current levels of emotion dysregulation, depression, anxiety, physical symptoms, and symptoms of psychological trauma. We then analysed the heart rate recordings to see how frequently participants’ heart rate changed across the recording and compared the data between patients and healthy volunteers.
CO N C LU S I O N While our study cannot say whether FND is a cause or consequence of reduced Heart Rate Variability, emotion dysregulation, and trauma, our findings do give us some important new insights into FND. Firstly, we have shown that patients with FND have something measurably different about their nervous systems, that in future doctors may be able to look for when diagnosing patients or assessing how well a treatment has worked. Secondly, we now have one potential explanation for why it may be difficult for some people to recover from FND. Finally, the findings from this study support the understanding of FND as a disorder of the brain and body with both biological and emotional aspects that are connected with each other.
WINNER OF THE BNPA POSTER AWARD 2018
We found that there were fewer changes in the heart rate of patients with FND than healthy controls. We also found that individuals with less variability in the heart rates reported more symptoms of emotion dysregulation and symptoms of psychological trauma. Importantly, this does not mean that there is a problem with the heart in patients with FND. However, it does suggest that the brain is in a state of slight but persistent stress in those with FND, and is not flexibly controlling the heart (and therefore the rest of the body) in response to potentially threatening information. It also suggests that the more difficulty an individual has with perceiving, expressing, and regulating their emotions and the more traumatic experiences they have encountered, the less flexibly the brain is controlling the heart and the body.
ISOBEL WILLIAMS
R E S U LT S
Why did you choose to research FND? Like so many people, I had actually never heard of FND until I saw this PhD project advertised. When I looked into it further, I realised that researching FND was the ideal way for me to pursue my interest in the relationship between between neurology and psychology, and (as cheesy as it sounds) to potentially make a positive difference to the lives of people living with the condition.
What are your future plans for research? I am just about to hand in my PhD thesis on emotion regulation in patients with FND. So other than passing my viva (fingers crossed), my immediate plans are to publish the rest of our findings. Longer term, I want to build a career that combines both clinical research and practise in FND as well as other neurological conditions.
What is your hope for the future of FND patients/research? It amazes me that FND is as common as Multiple Sclerosis, but very few people have heard of it, and even fewer understand it. My hope is that as awareness is raised, the general public, medical, and scientific communities will turn their attention to FND so that it can be thoroughly researched. Ultimately, I hope that this will translate into FND patients routinely receiving effective and compassionate treatment.
PARENTING WITH FND A MOTHER’S PERSPECTIVE By Stephanie Bradley
L
iving with FND brings daily challenges. Add parenting into the mix as well and it becomes doubly challenging and overwhelming at times. Delivering a healthy joyous bundle was my reason to keep strong and maintain a level of overall wellness with new priorities in planning around my symptoms to care for baby. It have also been extremely fortunate with a partner who loves unconditionally, and brings consistent reassurance when I truly felt that all hope was lost in my FND journey. When I realised I was expecting, my mind started to fill with many ‘what if’ scenarios. How was I supposed to navigate the seas of parenthood when
I was already facing another obstacle? But the day my child came into the world, I knew instantly that my own world would change for the better. Even though parenthood does have its ups and downs; it has made me a stronger person. The unconditional love I have for my child inspires me to push through the bad times and to finally believe that I will be okay. This new found strength is beyond anything that I have ever experienced and a gift. Yes, it is still scary when your symptoms flare, though it is also an opportunity to teach your child that there are many different people in the world with numerous health problems and
disabilities. You can show your child to accept them and to not be afraid, teach them compassion and understanding of others. There is a lot we learn from parenthood as well. We learn to be patient with ourselves and others. Our knowledge of child health becomes the main priority of research and also to gain helpful insights with our own health. Being responsible for a little one also makes us very conscious about organising and planning for times when we are unwell, maintaining good nutrition to fuel our bodies, helps us to develop and build upon life skills such as pacing ourselves, resting in between feeds and prioritising not only baby’s needs but our own needs as well. Caring for a young one can also be a distraction to our own FND symptoms
and in some cases our symptoms may settle. To know when to ask for help is important if we are experiencing a flare of our symptoms and rest is needed. We explore different ways of doing things and plan for these before and after baby is born. When thinking of different options in planning ahead for myself and my little one’s care,, I collaborated with my doctor and my family. Confiding in the people who know you, your health, and your symptoms helps greatly in making a plan that fits the new needs as a new Mother. Within my family unit, we made sure that there was someone close by for me to contact, who could be over within a couple of minutes, when I started to feel overwhelmed and my symptoms started to flare. When my husband had to travel for work, we made sure there was someone I could stay with.
Having a good support network, whether it be from your family, spouse, significant other, religious group, or close friends is extremely important for not only the care of yourself but for your child or children as well. Other support systems are available, and I did utilize these services before and after my little one was born. Community organizations that came into my home to help both myself and my child’s needs. Services that help you attend doctor's appointments, running errands, going to the grocery store, or to pick up prescriptions.
Becoming a parent has not only educated me on how to live a healthier life, it has also proven to me that I am stronger in ways I could never have imagined. Challenges that seemed insurmountable in pregnancy with my ‘what if’s’ were met with planning, organizing, prioritizing, and new found confidence and inner strength.
As a FND Mum, my children need extra attention and credit in their role as child and sometimes helper. I ensure no matter how I am feeling the children know these three things: 1. They are extremely loved, valued and appreciated. 2. They are safe and FND will not hurt them. 3. They are free to talk and ask questions about everything that is happening to mummy. –Dee Mayne
Helpful Self-Care Tips When Parenting with FND: •Try and not to overdo yourself. It is perfectly fine to just do one activity or craft a day with your child or children. •Make sure to put some time aside for yourself. Whether it be relaxing in the tub, laying down or taking a nap while your little one or ones take their nap, having a spa day, or just sitting down reading a book; just make sure to have some time to relax and destress. •It is always a good idea to have a go to person to confide in. This can be either a therapist, close friend, family member, spouse or significant other, or a combination of those people. But having someone there for you who you can ask questions or just to vent to will stop you from bottling up your emotions and thoughts. •Make sure you listen to your body. Listening to your body and knowing when you need extra help and asking for it is key to not only taking care of yourself but your child or children as well. •Always make sure to take care of yourself as well. With having good nutrition and hygiene this will help keep you energized and healthy so you can take care of your child or children.
FND WORD PUZZLE
Click here to find out how you can get involved in spreading awareness!
We Need You How to submit content fo FND Magazine
If you submit artwork or photography please include a short paragraph explaining how this speaks to you and your FND. Here are some suggestions of topics if you are looking for inspiration on how you can tell your personal story: Mind Mindfulness, Mindset, Motivation, Meaning, Purpose, Forgiveness, Strengths... Body Appreciation, Wellness, Compassion, Self-care, Giving Back...
We
are always after submissions about your experience of living with the diagnosis of Functional Neurological Disorder (FND). This is not limited to just your experiences but also your family, friends and/or Carers. This is our exciting first issue of what will be initially a bi-annual digital publication. Our hope is that our magazine will be quarterly, for this we need submissions. And that is where you come in. The power of a personal story is far greater that we can imagine. It can help other to feel less alone, to know others are experiencing similar issues, to support carers, family and friends, to inspire others and so much more. You do not need to save up your submission for when we put a call out. Which could be up to 6mths in advance. I would love to be inundated with submissions all year around that we can use in our magazine as appropriate. Submissions are only limited by your imagination. Predominantly we are looking for written stories, artwork, or photography.
Soul Nature Connection, Soul, Social Connection, Love, Gratitude, Focus, Letting Go, Authenticity, Vulnerability...
In FND Magazine we want to share your stories in a responsible and respectful way. Storytelling is such a powerful tool to help others understand your experiences and also to help others not feel so alone. In order to do this, we need to be sure that everyone who submits a piece for the FND Hope Publication feels safe. These guidelines are here to help make that possible. It is our hope that these encourage and not hinder you in telling your story. If you are concerned in anyway that your story (in whatever format you choose) might not fit within a guideline, please don’t turn away. Send it through and we can work with you on it. Everyone’s story is important and different.
When submitting a piece please consider the following: The privacy of your loved ones, friends and strangers you might discuss in your story. Be respectful of their details when discussing your story and sharing details of their lives. Tell your story from your perspective. Try not to make assumptions about how others in your story might feel, think or act. Please avoid comparing your situation to others. We are all in this together and that does not mean that any other person’s circumstance is better or worse than your own. Please use respectful language. You might be talking about a difficult situation that you have faced, this is perfectly understandable, try to be constructive in your language. If you are stating facts please provide the sources and references for these facts. What we accept We prefer original content that hasn’t been published elsewhere. However, we will also accept previously published work as long as you can show that you have retained author rights over the story and the ability to publish elsewhere. Sometimes we will look for work on specific topics but in general we will accept all pieces of work that speak about your experiences with FND. We also encourage and
look for work from carers, friends and relatives of people living with a FND Diagnosis. ARTWORK & PHOTOGRAPHY Please submit images of your artwork ensuring that the resolution is 300ppi if they are smaller than this then we can’t ensure how the image will look in the publication. POETRY No more than 30 lines. WRITTEN STORIES Between 500-800 words Editorial practice and publication We reserve the right to edit submissions according to the needs of the FND Hope Publication. We will do everything we can to preserve the integrity and feel of your piece. In the event that major structural changes are required we may return the piece to you for approval, however, we will not do this in every instance. Submissions will generally be selected an issue in advance, we will always endeavour to advise you when your piece will appear. It may be decided that your submission is better suited as a story for the website in this event we would contact you to advise of the change in use. FND Hope DOES NOT offer any payment either financial or in kind for any work submitted. Please e-mail all your Submissions to our Editor at: ezine@fndhope.org
FND HOPE
United States | United Kingdom | Australia | Canada | Netherlands To learn more about Functional Neurological Disorder visit www.fndhope.org
Empowering Patients to Better Health This publication is copyright. No part of this publication may be reproduced without the prior written permission of the publishers of articles, application for which should be made to the publisher. The views expressed in FND Magazine are those of contributors and not necessarily those of FND Hope Inc. FND Hope Inc. does not endorse any advertiser, any goods or services advertised, nor any claims or representations made in any advertisement. Nor does FND Hope accept any liability to any person for loss or damage suffered as a consequence of their loss in responding to, or placing reliance upon any claim or representation made in, any advertisement. FND Hope In reserves the right to withdraw or cancel an advertisement which is not deemed not in keeping with the aims of FND Hope Inc.