FND Magazine Vol. 1 Iss. 2 August 2018 by fndhope

FND MAGAZINE

Vol. 1, Iss. 2 Aug 2018

A FUNCTIONAL NEUROLOGICAL DISORDER PUBLICATION

COVER STORY

Never give

THIS ISSUE

COVER STORY

DOCTORS NOTE

HEALTHY LIVING

Never Give Up

Kathrin LaFaver MD

Beth Finnigan

eorgia Charmichael's journey through injury, diagnosis, rehab and back to the winners podium. The inspirational story of a young woman determined to never give up.

athrin shares insight about her MORE treatment program and current work in the area of FND treatment.

eth Finnigan joins us from Be Well to share her healthy living tips and recipes.

MIND | BODY | SOUL

Experiencing MoRe

RESEARCH

Patient Perspective

Current Diagnosis & Treatment

assandra Grey states: I like to think that I have started a new life, a new disabled life.

lison Hayes shares her experiences as an inpatient of the MoRE program and the difference it made in her life.

my Bradley has a look at a recent article, Current Diagnosis & Treatment in FND published in JAMA Neurology.

Cathy O’Brien editor-in-chief

This issue has been a pleasure to put together. We have been fortunate to welcome a few new writers to our team. This has really taken the pressure off me to do it all. Something that I am capable of but have had to learn my limitations. I feel I need to apologise for the delay in getting this issue out as well, I had a small flare of my FND symptoms. This highlighted to me the importance of having a great team around me to continue the work when I can’t. As you can see we have had an amazing list of fundraising activities occuring for International FND Awareness Day and other ongoing events. We wholeheartedly thank each and every one of you for undertaking these events. We know how much effort goes into fundraising. I had the pleasure of spending some time via video with the inspirational Georgia Carmichael for our cover story. Her tenacity and desire to get back onto the winners podium in spite of her FND diagnosis is nothing short of amazing. A special mention needs to go to her mum who never gave up advocating for Georgia, to make sure that they got to the bottom of what was happening. It made no sense to the family how Georgia could go from being a World Champion to paralysed in about six months with no obvious cause. It goes to show how important having a strong advocate in your corner can be. Cindy (Georgia’s mother) is now dedicating her time to raising awareness of FND, even going as far as going into their local hospital to hand out educational materials so that in the future others don’t have to go through what Georgia did. On the topic of advocating, this will be the focus of our third issue due out in approximately three months from now. If you have a story you want to share about an experience you have had advocating for yourself or a loved one or perhaps someone advocating for you we would love to feature it. Once again it has been my privilege and pleasure to put together this issue. Thank you to the entire team that work on the magazine, without you it wouldn’t be possible. Until next time!

Cat

Letters to the Editor Hi Cat The magazine is great. I loved reading it good job. I love having an fnd magazine to read. Way to go. Your friend Callie H.

I wanted to congratulate you and your team for a job well done- I know you have all put in long hours, sacrificed much family time and have put on many hats to get the job done!

I really enjoyed reading the first edition of the magazine and am looking forward to the next one! Best wishes Ali. X

The FND world will and does thank you and will always remember you for this and many more of your wonderful editions to come. Thank you for getting it done!!! Lauren

Next issue: Have you had an experience advocating for yourself or someone else living with FND? Share your story in 300 words or less and it could be featured in letters to the editor in our next 2018 issue.

Welcome to the FND Hope Team Canada Functional Neurological Disorder FND Hope Canada

FND Hope Canada Board members are as follows: Dr Mohamed Gheis -Chairperson, Bridget Mildon, Krissi Spinoza.

Never give By: Jodi Rosoff

“I don’t let FND define me.” -Georgia Carmichael

Click Here to Watch Georgiaâ&#x20AC;&#x2122;s story Video

eorgia is a vibrant 16 year old. She is an athlete, a kayaker, a daughter, sister, friend. She should be living the same life as her peers, dealing with typical teenage issues and enjoying her youth. Unfortunately,

Georgia â&#x20AC;&#x2DC;s life is not as easy as it should be as an adolescent. Georgia struggles with FND. Her story is one of frustration, confusion, and determination to be the best she can, regardless of her diagnosis.

care hospital and that is where her recovery began. Georgia describes that initially she had what could be described as usual concussion symptoms (headaches, fatigue, disorientation, nausea), that would heal in time. Soon after, she went for a walk and had a seizure, causing her to lose the ability to speak and walk. She went to her local hospital where doctors saw her as a possible drug user or maybe a young girl with psychological issues, due to her age. The doctors, whom we all seem to think have the answers and know what they are doing, simply sent her home. Her symptoms progressed to the point that one day she went to bed and lost sensation from her head down. She was in

his is Georgia’s story. Prior to June 2017 she was your typical 15 year old teenager. Georgia’s interests include: Kayaking, music concerts and hanging out with her friends. She was in year 10 at school in England (which means she had at that time three years left of school before university), and she had not long returned home from a Kayaking MARATHON World Cup. Where she had won gold medals in both of her events representing Great Britain. Then her world was turned upside down, when a seemingly benign accident happened when she fell from a bench at school and hit her head. Initially diagnosed with concussion Georgia’s life rapidly spiralled from a bump on the head to a seizure, eventually progressing to being completely unable to move her body from the neck down when she was finally admitted to a large primary

“In a race you don’t give up, and I’m not giving up.” -Georgia Carmichael

constant pain for months and frustrated. Then Georgia seized for a second time. Her mother and greatest advocate refused to have her treated at the local hospital and insisted that the ambulance take her daughter to a University hospital, 45 minutes away. Within ten minutes, at the University hospital, Georgia was properly diagnosed with FND. Misdiagnosis and lack of FND awareness, with the doctors at the local hospital, unnecessarily caused Georgia’s prolonged symptoms, as is the case in so many, if not the overwhelming majority of FND patients across the board. Georgia’s mother has since made it her life mission to educate not only the local hospital but everyone else she meets about FND. She spreads awareness of FND to medical professionals who lacked the muchneeded knowledge about FND accurately to diagnose Georgia and the many others like her Prior to Georgia’s head trauma and FND diagnosis, she was an active teenage girl, who enjoyed spending time with friends and performing as an elite level kayaker. Kayaking was central in Georgia’s life: training, competing, recovering and repeat. Now, suddenly, any socialising with her friends became overwhelming. She struggled to be around a lot of noise and suffered sight and focusing issues. She couldn’t walk, run or balance so getting back into a tiny kayak that can easily tip if your balance is even slightly off was about the furthest thing from her mind. Yet, Georgia’s positive attitude and determination to overcome her diagnosis and regain her ability to do what she was passionate about, her sport. This gave her the drive to push through six weeks

of intense therapy with the team of doctors, neuro-physiotherapists, general physiotherapists, and other staff at the hospital that her mother had the ability to put in place. Georgia, although always unsure if a body ache or moment of confusion, was related to FND kept her attitude positive and persevered. Within months of Georgia’s battle, she joyfully returned to school. Instead of getting frustrated, which is common for those with FND, Georgia had a laugh when she couldn’t remember her friends, their inside jokes, the names of her teachers, being at places she was photographed in, etc. With the help of her friends and support of her school, Georgia regained a lot of lost memories, and with the aide of post-it notes and other strategies, she is happily continuing her education. What really impacted Georgia’s recovery the most was her sport, kayaking. Prior to getting back into a boat, Georgia feared she wouldn’t remember what to do and knew her balance was not what it used to be. Regardless, nothing was going to stop her from keeping her passion alive.

Once she stepped into the kayak, something clicked and brought her back where she wanted to be, in her sport. The more she paddled, the better she felt. Kayaking gave her confidence and made her stronger. Georgia set goals to continue training, yet very maturely she prepared herself for flareups, and knows what to do when they occur. In Georgia’s words, “In a race you don’t give up, and I’m not giving up.” She certainly did not give up. After her return to her sport she went to the national championships and incredibly received second place. “I don’t let FND define me,” she so bravely states. Georgia is an inspiration; some may call her a hero. Georgia does not spend much time thinking about her diagnosis. She focuses on her sport and the incredible support system around her. All that she has endured made her a stronger young woman. For Georgia, it’s mind over matter. In 2018, Georgia received the well-deserved Young Woman of the Year Award.

Personal images supplied by family Officials Photos: Iain McIntyre Images used with permission

FND SPECIALIST SPOTLIGHT

KATHRIN LAFAVER MD. Movement Disorder Clinic Director Raymond Lee Lebby Chair of Parkinson’s Disease Research University of Louisville.

A note from the doctor

unctional Movement Disorders (FMD) are commonly encountered in neurologic practice and mimic symptoms of other neurologic disorders, but can be diagnosed based on a typical history and features on examination. Many patients have a variety of abnormal movements including tremor, jerking movements, abnormal posturing of limbs, difficulties with walking and speech problems. FMD symptoms can be variable over time and are often associated with additional complaints such as weakness, numbness, fatigue, pain, poor concentration or memory difficulties (“brain fog”).

the diagnosis, regaining control over abnormal movements and learning skills to cope with stress and prevent relapses. The program is based on motor reprogramming strategies developed at the Mayo Clinic in Rochester,

Diagnostic studies such as MRI of the brain and spine, nerve conduction studies, EEG and laboratory studies are typically display normal results and do not show brain lesions or other abnormal findings responsible for your disorder. The different parts of the nervous system (brain, spinal cord, nerve roots, peripheral nerves and muscles) are still in working order, but do not function well together. FMD can have a chronic course and lead to disability, however it is possible to retrain the nervous system and restore normal function. The sooner the treatment starts after onset of symptoms, the better the prognosis, but even patients who experienced symptoms for many years have the potential to get better.

1. The principle of “motor retraining” (MoRe) is relearning of normal movements, similar to treatment of other neurological conditions (e.g. stroke, multiple sclerosis) with the goal of neurologic normality.

We offer comprehensive, multidisciplinary evaluation and treatment for patients with FMD in our motor retraining (MoRe) program at Frazier Rehab Institute. MoRe uses strategies aimed at better understanding of

Patients undergoing the MoRe program have shown improvement in their symptoms in >85% after one week of treatment, and self-reported improvement of symptoms was maintained in 69% after six months.

Principles of Therapy:

2. Treatment begins with reestablishing elementary movements in the affected limb or body region, and building on those. More complex movements are only introduced after simple movements are performed successfully. 3. Mental practice is used to supports training efforts. 4. Cognitive behavioral interventions are aimed at identifying triggers and other factors contributing to abnormal movements. The patients will learn ways on how to overcome obstacles that stand in the way of their symptoms getting better.

Research There remain many open questions about functional neurologic disorders and few researchers have studied these conditions in the past. We are actively involved in FMD research to define risk factors, biomarkers and neuroimaging correlates of the disease. Our goal is to better understand underlying pathophysiologic mechanisms by studying brain changes occurring with therapy and help patients achieve best treatment outcomes.

Further Reading Williams DT, LaFaver K, Carson A, Fahn S. Inpatient treatment for functional neurologic disorders. In: Hallett M, Stone J, Carson A, eds., Functional Neurologic Disorders, Volume 139 of the Handbook of Clinical Neurology series. Amsterdam: Elsevier, 2017: 631-641. Abrol T and LaFaver K. Functional weakness and dysarthria in a 66-year-old man previously diagnosed with CIDP. Practical Neurology. 2017(Jun): 42-44.

Photo Courtesy: Kathrin LaFaver

LaFaver K, Espay AJ. Diagnosis and Treatment of Functional (Psychogenic) Parkinsonism. Semin Neurol. 2017;37(2):228-232. Jacob AE, Smith CA, Jablonski ME, Roach

AR, Paper KM, Kaelin DL, Stetz-Thurmond D, LaFaver K. Multidisciplinary clinic for functional movement disorders (FMD): 1-year experience from a single centre. J Neurol Neurosurg Psychiatry. Epub 2017, Nov 15. Faul L, Depue B, Jacob AE, Kaelin DL, Espay AJ, LaFaver K. Functional neuroimaging of functional movement disorders (FMD) before and after a rehabilitation program.

Patient Story

r. D. came to our clinic after 11 years of leg weakness and tremors that started after a back injury. His symptoms prevented him from being able to work, and although he participated in outpatient physical therapy, he had not been able to gain much improvement in his function. Mr. D. found the physical and occupational therapy and psychological skills training in the MoRe program very helpful. Over the course of the treatment week, he was able to improve his gait remarkably and learned techniques such as deep breathing that helped him control his tremor. In his own words: “The staff, therapists, doctors and everyone involved have been amazing to work with. The communication between everyone to make sure I am taken care of has been something I have never experienced and I believe has been vital to my success.” Mr. D. continued with some encouragement for others facing similar issues, “I want others to know that we don’t have to accept the words ‘You just have to learn to live with it’. Instead, we can learn what it’s like to live without it.”

Full text of this article is found here: https://www.uoflphysicians.com/more

FND SPECIALIST SPOTLIGHT

Kathrin LaFaver

Interview By Cathy Oâ&#x20AC;&#x2122;Brien.

am a movement disorder specialist and Director of the Parkinsonâ&#x20AC;&#x2122;s and Movement Disorders Clinic at University of Louisville in Kentucky. I have been involved with FND over the past 10 years and am especially interested in finding out more about brain mechanisms responsible for abnormal motor control and effective treatment for functional movement disorders. I was lucky to have great mentors in this field such as Dr. Mark Hallett at the NIH, and am currently chair of a new FMD study group by the International Movement Disorders Society.

biomarkers that could be helpful both in making the diagnosis and tracking outcomes in patients. I also hope to inspire other centers in the US to develop dedicated treatment programs for FND. To that end, we organized a course for healthcare professionals about our multidisciplinary treatment approach, and we plan to offer another training course in 2019. Affected patients and healthcare providers need to come together to make our voices heard and advocate for FND in order to make a difference.

In collaboration with Dr. Darryl Kaelin at Frazier Rehab Institute in Louisville, we started a multidisciplinary treatment program for functional movement disorders in 2014, the MoRe (motor retraining) program. We have recently completed a pilot neuroimaging study, using functional MRI to investigate movement control before and after patients undergo treatment for FMD. The data is very promising, showing a clear shift in centers activated with movements after treatment, which will help us understand brain mechanisms involved with FMD better. My goal is to expand our neuroimaging research and look for other

What piqued your initial interest in FND? During my second year of neurology residency at Mayo Clinic, I did an elective in movement disorders with Dr. Eric Ahlskog. We saw a young woman, who experienced paralysis of her legs following a car accident. When I learned about her diagnosis of FND, and her subsequent complete recovery a few weeks later after undergoing a physical therapy program, I knew I wanted to learn more and help patients like her in the future.

"Affected patients and healthcare providers need to come together to make our voices heard and advocate for FND in order to make a difference." -Kathrin LaFaver

What stands out for me the most is the enormous difficulty patients are facing in getting a timely diagnosis and access to treatment. The stigma patients with FND have to face is almost unparalleled in modern medicine. Every patient has a story of suffering and all too often negative experiences with some of their previous healthcare providers, being accused of “faking” symptoms, treated disrespectfully or dismissive. Given the common nature of FND and opportunity to return to normal neurologic function with treatment inspires me, and I want to continue being an advocate for better recognition, research and treatment for FND.

If you had a magic wand to fix one symptom or issue that FND patients face what would that be and why? I would like to fix the lack of awareness by both the public and many healthcare providers about the diagnosis of FND. Compared to other disorders with similar prevalence, FND has been neglected and not taken seriously by professional societies, funding agencies and decision makers in healthcare for far too long – it’s high time to change this!

Photo Courtesy: Kathrin LaFaver

Is there one case in particular that stands out which makes you want to keep researching and striving for answers for FND patients?

Tell us a little bit about yourself when you are not working - what do you do to relax & unwind? My children are still little (5 and 2.5 years-old), so I don’t get to relax a lot. As I’m teaching my daughter first steps on the piano, I’m getting back into playing myself for fun. I am also fairly active on social media as administrator of a group for women neurologists, and you can find me on twitter under @LaFaverMD.

Experiencing

MoRe Motor Retraining By Alison Hayes

he six nights I spent in Louisville, Kentucky as a patient in the MoRe program was the single most positive experience I’ve had in handling my FND/Conversion Disorder since I was diagnosed. The hospital itself has great food service which is always a plus and my experience with the support staff was much better than I’d ever previously experienced in a hospital. The program is specifically designed for people with functional movement disorders (FMD). It is a six-day/ five-night inpatient program, starting Sunday afternoon or early evening and ending late Saturday morning. I arrived at the hospital Sunday afternoon as rest/down time to make sure that when things got started on Monday morning, I was ready to go. The staff worked with me Monday morning through late Friday afternoon, and I had rest overnight so that they wouldn’t need to worry about discharging me until Saturday morning. The nurses really like having FND patients, they

have seen a variety of symptoms, so they have some idea of what to expect. They are aware symptoms present differently in each person. When I left, they encouraged me to get more FND patients in, as we are so interesting and different from the standard patients. The hospital also has a policy where FND patients are not to leave their bed without supervision until they have earned their orange band, an acknowledgement of not being a fall risk. To wander out of the hospital room you also need to have a green band - if you have that, you can walk to your own appointments and enjoy some R&R visiting the gift shop, cafeteria, or wherever else suits your fancy, so long as you remain on the hospital campus. Hospitals do run on a very earlytending schedule. I was woken up for the day a little after 6 AM for the arrival of my

e breakfast! After I had breakfast I met my occupational therapist (OT) first. She was slightly surprised to see me dressed and ready to go. If I had been in worse shape, she would have been evaluating my activities of daily living (ADLs) to see what we needed to work on, and most people admitted do need that. We talked about how I can dress and bathe myself, and things like that. However, if an activity is repetitive or time-sensitive, I tend to get symptomatic. She got to know me a bit, had me demonstrate some of what I could and couldnâ&#x20AC;&#x2122;t do, and told me that we would really get going in the afternoon.

Getting Started Dr. LaFaver had agreed at my intake to have me meet with a speech therapist since one of my fewer common symptoms is to have the volume of my voice abruptly rise or lower. The speech therapist came in the room a few minutes after my OT left, and

we talked about how I occasionally have problems controlling the volume of my voice. My physical therapist came in a bit later with a person to video-tape me. I was asked to walk, move my hands and fingers in certain ways, and walk heel-to-toe. This was so the researchers had documentation of how I was before and after treatment. She was very nice, approachable and very cheerful about working with me. In between appointments, I colored and relaxed the best I could. After lunch, my OT walked me down to the PT gym and we chatted while she tested my balance by bouncing a balloon back and forth to one another, to where I progressed in hitting the balloon with a weighted stick that I held in both hands. Her goal was to help me improve my strength and balance throughout the exercise. I then had my second appointment with the speech therapist. She had me call in my dinner order, so she could hear me

talking on the phone and see if we could trigger my symptoms. The call was made with no issue, so we agreed to talk in a noisier public environment to see if that would trigger my symptoms. My afternoon appointment with my PT was focused on walking. She encouraged me to use visualization and another distraction technique of finding my happy place to help me keep walking without my legs making unusual movements. During these rounds of walking, I found myself improving. It was really exciting! After that, I practiced climbing stairs on a practice stairway of 4 steps up to a small landing that leads to ramp with two steps down. Through all this, I’m wearing a rainbow belt that they gave me - it’s designed for my PT/OT to be able to catch and support me if needed. I wore it until I progressed to the orange band. After working on walking and steps, she walked me back to my room. A short while later, Megan came in to chat.

I never needed an aide, other than to occasionally bring some ice for slightly sore muscles later in the week (I was thrilled to have slight muscle aches from exercise!). The few times I used the call button, they were quick to respond!!

Moving On

After the second day, the speech therapist and I agreed that I didn’t need to keep those appointments up as I was maintaining good symptom control in that area. My OT ended up including climbing the stairs (with and without carrying things), and a lot of coordination activities (by the end, I was bouncing birdies back and forth with her using a racquet while standing on a balance ball!). My PT focused on controlling my symptoms and building up my coordination. I went from needing to focus to walk with symptoms to being able to do a variety of coordination exercises without symptoms, going for walks around the hospital campus, and doing a set of PT exercises to build my core muscles and reinforce standard muscle use. I did those exercises daily for well over a year afterwards. During my time with Megan, we went over the basics of cognitive behavioral therapy (CBT) the importance of meditation (including an app, “Calm”, which I still use regularly), and delved into insights I had about the shifts in my symptoms during my time there. CBT is an exercise of thinking about your emotions, so that you can process each step and better recognize your personal triggers and be better able to respond to them. Meditation, especially mindfulness meditation, is a super

“I was sad to be leaving my new friends behind but looking forward to coming home to my partner and let him see how transformative the week had been.”

Megan is the psychologist who I met at the initial evaluation. I’d had a favorable impression then, and I remained very positive when she came in that afternoon to talk more about my personal mental health and symptom history, how I have coped with everything. She left me with some ‘homework’ of exploring those ideas further by writing out the sequence of events in my life and thinking the patterns or themes in these events and their outcomes. I have had a long history with psychological therapy, and I’d done similar activities before. The exercises she gave me made a lot of sense given my experiences and understanding of FND.

“While I had limped in on my own at the beginning of the week, I happily walked out...”

helpful technique that helps you regain selfcontrol, learn to truly relax, and work on being in the moment, instead of focusing on past memories or fears for the future. At the end of the week, I was sad to be leaving my new friends behind but looking forward to coming home to my partner and let him see how transformative the week had

been. Megan sent me home with her card so that she and my therapist could discuss my time in Louisville. Dr. LaFaver forwarded information from my visit to my neurologist. While I had limped in on my own at the beginning of the week, I happily walked out more fully in control of my body than I have been since 2003.

Patient Tip Elizabeth F. 1. Nature - Try and spend half an hour outdoors every day. 2. Exercise every day. 3. Eat good healthy food; lots of nutrients, very little sugar, and avoid processed foods. 4. Talk daily, just chat be open and talk to your parents and your friends. 5. Sleep, go to bed at the same time and wake up at the same time. 6. Friends - Have fun socialise and play. 7. Learn something/be creative. Being interested and learning something out of choice is really healthy and good for the brain. 8. Pray daily - It’s difficult to explain this to non-believers but the power of prayer is unreal.

Creating a Healing By Beth Finnigan

g Environment “Let food be thy

medicine and medicine be thy food.”

– Hippocrates

Leafy greens at every meal! Packaged, organic leafy greens come in multiple varieties and are readily available at every grocery store. Your local farmer’s markets offer fresh seasonal greens in many varieties. Leafy greens are rich in fiber, phytonutrients, antioxidants and are antiinflammatory. You can often find them pre-washed and ready to eat. Here are some examples of how you can include them at every meal: Breakfast: sauté a few handfuls of baby spinach and kale in coconut oil served in a pre-baked sweet potato and top it with an over-easy egg. Finish it with a sprinkle of pumpkin seeds and fresh salsa. Lunch: a garden salad with a handful of your veggie chop, fresh tomatoes, cucumbers and deeply colored peppers. Top this with your choice of protein like left-over salmon or chicken and sprinkled with your nuts and seeds mix. Dinner: Using the recipe included, Zucchini Noodles with Fresh Tomato Sauce, served over fresh arugula (rocket). The heat of the freshly sautéed noodles will wilt the greens beautifully.

Beth preparing food inventory

n my work as a health counselor, I have witnessed first hand the power of food and its impact on creating health. A healing protocol that includes multiple medications may somehow diminish food’s vital role in your healing journey. Don’t let that happen! Medications are generally targeted at specific symptoms. A diet rich with variety that includes leafy greens, deeply colored vegetables and berries, surfer rich vegetables from the cabbage family and healthy fats — crucial to brain health and nerve function — are foundational in creating an environment for your entire body to build, repair and thrive. Equally important in creating a healing environment is what is not included. A therapeutic, healing diet should exclude refined sugars, flours, cheap seed oils high in omega 6, and processed foods. Every effort should be made to limit exposure to toxic pesticides by eating organic, locally grown foods whenever possible. You may find this article and guide helpful in reducing your exposure. In struggling with the day to day challenges of a neurological disorder, preparing healthy meals may feel overwhelming, to say the least. Let’s consider some of doable strategies as a place to start in creating an optimal environment for healing!

Create Food Inventory Think of your pantry, refrigerator and freezer as your store, and you certainly want to have choices available! When you cook, double or triple recipes that freeze well, like soups and meatloafs. This may also mean eating the same dish for a few meals — and that’s absolutely fine –– you’re saving time and effort while optimizing nutrition! Here are some of my tried and true hacks for creating nutrient–dense inventory:

Make a weekly veggie chop using vegetables such as red cabbage, carrots, cauliflower and broccoli. These vegetables live well together for at least a week if stored properly. Because they do not contain a lot of water, like cucumbers and tomatoes, they do not break down easily. I store mine in a ziplock freezer bag lined with unbleached paper towel with all air removed. Check out this video of how I do this below.

CLICK HERE FOR VIDEO

Sweet potatoes halved, rubbed with olive oil, sprinkled with salt and pepper and roasted, store easily in the fridge for 5-6 days. Prepare several and have them at the ready as a base for sautéed greens or leftovers. Purchase pre-portioned packaged wild-caught fish, such as salmon or cod. These are usually found in the freezer section of your grocery store. Because they are individually wrapped, you can easily thaw just what you need. But, remember to always cook extra portions to use for topping a salad the next day! Purchase whole, humanely raised chickens. If you’re lucky enough to find them on sale, purchase 2 or 3 of them to have on hand in your freezer. A roasted chicken is an

easy meal, provides leftovers for topping salads or creating the base for another meal. The carcass can then be used for a soup stock or bone broth, full of valuable nutrients. Stock up on non-perishable staples to make weekly grocery shopping easier. Purchase raw nuts and seeds in bulk and store them in the freezer. These provide healthy fat and protein to use on salads, in smoothies and for snacking. I keep a jar of sunflower seeds, chopped almonds, walnuts and pistachios in the fridge for a nice topping on salads or sautéed greens. Enjoy these simple recipes that can easily be doubled for creating an inventory of healing foods!

Beth Finnigan is a Certified Holistic Health Counselor who applies her passions in food, health, movement and personal connections to create strategies to improve lives. When she’s not busy crafting a plan for someone, doing yoga, preparing delicious, nutritious foods — or growing it in her garden — you’ll find her cozied up with a dog or two in her home in southern New Hampshire. bethfinnigan.com

Healthy Recipes En j oy t h e s e s i m p le re c i p e s t h a t ca n e a s i ly b e d o u b le d fo r c re a t i n g an inve ntor y of h e a li n g fo ods! ZUCCHINI (COURGETTE) NOODLES WITH FRESH TOMATO SAUCE 2 servings You can make this a super fast meal by purchasing spiralized zucchini! 4 medium zucchini, spiralized 2 T extra virgin olive oil 1 cup ripe grape or cherry tomatoes 1/2 tsp kosher salt 12 to 15 turns freshly ground pepper 2 large cloves garlic, crushed 1/4 cup chicken stock handful fresh basil leaves, roughly chopped Wash zucchini, peel off skin and use a mandoline or spiralizer to create noodles. Wash tomatoes and remove any stems. Set aside to dry. Grab a handful of fresh basil leaves, place in a flat pile, roll up and thinly slice. Place a large frying pan over medium high heat. Once very hot, add olive oil and then tomatoes. Cook tomatoes, stirring occasionally for 5 to 7 minutes until they are blistered and starting to burst. Sprinkle kosher salt and pepper over tomatoes, add in crushed garlic and chicken stock. Continue cooking, stirring constantly, for 1 minute until garlic is fragrant. Use the back of a wooden spoon to crush the tomatoes and release their juices. Continued...

Zucchini Noodles...Continued:

Toss zucchini noodles into frying pan, stir to combine and cook until noodles are heated through, about 3 to 4 minutes. Remove from heat, adjust salt and pepper if necessary, toss with fresh basil and serve.

TURKEY SPINACH MEATLOAF Preheat oven to 350 F/ 177 C 1 lb ground turkey 1 cup pecans 1 cup baby spinach 1 medium onion, peeled and roughly chopped 2 garlic cloves, peeled 1 tsp sage 2 T avocado oil (plus extra for oiling pan) 1 tsp salt ground pepper Place your turkey in medium bowl. In your food processor, pulse the pecans to a medium to fine chop and add to turkey. Do the same with the spinach. Next pulse the onion and garlic to a fine chop. Add the sage, avocado oil, salt and pepper. Mix all ingredients until well combined. Place in oiled loaf pan and bake, 35-45 minutes or until done.

Patient PERSPECTIVE

By Kayla Boaz

Dear FND Hope,

y name is Kayla Boaz, and I’m a Junior in High School. I was diagnosed with Functional Neurological Disorder at the end of 8th grade, but I did not find the FND Hope website until the start of this school year September 2017. The FND Hope website provided more information about my condition than any doctor or site. I have ever found. Not only did I learn more about my condition, but I also didn’t feel so alone anymore. For years, I have been on my own, trying to figure everything out with little success. No one understood what I was going through. This website connected me to online forums where I could talk to others like me. I had previously felt very hopeless. I couldn’t find a doctor who knew how to help me, and it seemed as if no one was even looking for answers. I felt as though many people focus on “popular” illnesses, but less common conditions do not receive as much financial support. So at the start of the school year, I promised myself I would spread awareness about mental health and fundraise for FND.

To spread awareness, I held a 45-minute seminar at my school’s diversity day about stigma toward mental illness. Despite being incredibly prevalent, mental illness is not taken seriously. I spoke about the physical effects that mental illness can produce, how little we know about the brain and much more. I admire those who spend their lives researching the brain. There is so much we don’t know and so many people we are unable to help because of it. To raise funds, I first held a bake sale at my school. I then held a painting fundraiser in which each person donated money who attended. I had 36 guests. I also received a couple of donations from friends and family who were unable to attend. Thank you so much for the incredible work you do. You are helping so many people who often feel trapped or hopeless. I will continue to spread awareness as best I can. Your commitment to this cause is invaluable. Thanks again, Kayla

CASSANDRA

FULL-TIME LAW STUDENT TO FULL-TIME WARRIOR O V E R N I G H T By: Cassandra Grey

llow me to introduce myself – my name’s Cassandra, I live in Brisbane, Australia, I’m 21 years old and in late December 2017 my entire life was flipped upside down when I experienced my first FND symptoms (total body paralysis). I used to be an incredibly highachieving law student who bought her first house when she was 20, dreamt of being a judge for the High Court of Australia or the International Court of Justice and was invited, as one of a 1,000 in

the world, to sit at the United Nations in New York in only the second year of my degree. I’ve swapped all that to build my own visual/textile art, fashion design and photography business that will launch around September this year. So far since my diagnosis in January this year I’ve learnt to walk again twice and my legs are currently paralysed for the third time. Since January I’ve been told four times by doctors to go home from the ER, sleep on the floor and go to the toilet in a bucket. I’ve somehow been (un)lucky enough to experience first-hand the complete inability of the medical profession to treat functional disorders. My FND diagnosis was the result of a clear MRI of my brain and spine, a failed lumbar puncture (which caused me to show all the symptoms of a stroke but an EEG confirmed was a non-epileptic seizure), multiple blood tests and a successful lumbar puncture (which ruled out infection). I only found out my official diagnosis of FND the day I was discharged from the second hospital I had to go to before doctors agreed to help me. The entire conversation went like this: Neurologist: “You have functional neurological disorder. Are you happy with that diagnosis and me as your doctor?” Me: “....yes?” Neurologist: “Great, you’re being discharged. Here’s a website about FND.” Until I was under the care of Dr Alex Lehn in March this year, I never understood what FND was or what I had done to cause my FND. I now know that FND is a fault in my nervous system that means my brain can’t receive, interpret or send signals correctly caused by the alignment of dozens, maybe even hundreds of biological, psychological and social factors at a moment in time. Ever since I was diagnosed I suffer debilitating symptoms every single day including multiple non-epileptic seizures a day

(the most being eight in 20 minutes and the longest being 5 hours straight). I am never able to be alone in case I go unconscious (which I have 31 times so far this year) and possibly stop breathing. I have already been admitted to ICU and put into a coma once this year. My Mum is within three metres of me 24/7, 365 days a day. My life is not like most 21-year-olds. For the last month and for the foreseeable future, every week goes like this: Monday – physio session with one of Dr Lehn’s team Tuesday – hydrotherapy session Wednesday – usually I have to see my GP Thursday – psychologist appointment and another physio session Friday – second hydrotherapy session Saturday & Sunday – recover and work on my business I like to think that I have started a new life, a new disabled life. I’m probably one of the few people who will openly admit that they are grateful for their disability because it forced me to have a life. Now instead of slowly driving myself into the ground trying to build my resumé, I’m truly and genuinely happy because every day I get to live my life as best as I can without any distractions, expectations or pressures. Sure, I have severe limits on what I can do each day (after all, I only have a certain amount of spoons) but there’s no way I’m going back to my old life. I wish I could’ve realised this without becoming disabled but I have to believe that everything happens for a reason. No matter what’s thrown at me, I know that I am stronger and I will never give up.

“I know that I am stronger and I will never give up.” -Cassandra, Australia

PEER-TO-PEER ADVICE: The advice that I would share is this: FND changes (pretty much) EVERYTHING! This is a life changing event. The learning curve is as steep as it gets and you don’t get any time to research or learn how to deal with your particular situation. (It’s very easy to get into the ‘blaming yourself’ spiral for not doing a good job. We all have to learn and adjust!) Things change. Symptoms change. Keep expectation up for improvement. First aid and problem solving skills are invaluable! Next, get onto sites that help you, the carer. e.g. FND Hope Mind Body Soul. Learn how to take care of YOU and don’t lose yourself in this new reality. – Marion W.

Fundraising for H O P E FND Hope would like to extend a massive thank you to all who have organized and participated in recent fundraising while extending equal thanks to all who are currently organizing events to raise much needed funds for FND Hope. Every dollar or pound donated to FND Hope, FND Hope UK, FND Hope Australia is put to good use with FND patient support, FND education, advocacy and awareness along with FND Research. If you wish to hold a fundraiser for FND Hope, please make sure to register your event on our website fndhope.org. FND Hope International Events Director Dee will help you in every way possible including creating a poster/flyer for your event. Register your event here.

Kayla Boaz and friends use art to Fundraise for FND Hope.

Zoe and Rhiannon, sister and friend of FND sufferer, take their support for FND to the water.

L-S Baseball Booster FND Hope Fundraiser Lampeter-Strasburg High School Silent Auction and Awareness Night Raising USD $1844 The entire team (Junior Varsity and Varsity) lined up on the base paths to support Jason Linsey and bring awareness to FND. Team and FND Hope ribbons were painted on the field celebrating the night. Jason Linsey spoke about his FND Journey standing on the pitch, thanking everyone for supporting the FND Hope fundraising night. It was a very moving speech with his family who were there to support him.

THANK YOU Click here to register your FND Hope Event or Fundraiser then send us photos from your and you could be in our next issue!

Georgia Tindall, Australia Brigidine College St Ives Cake/ Bake Sale Raising AUD$800 Georgia asked her peers and staff at Brigidine College St Ives to support her FND Hope cake stall fundraiser. They generously supported her efforts in turn acknowledging her FND and understanding more about this disorder. This support brought Georgia much hope and happiness.

Thank you to all our Amazing Facebook Fundraisers

“We finished the marathon, in 5 hours 52 minutes. It was a challenge but me and my friends finished” -Rhys Couchman

Rhys Couchman, UK Rhys and a team of friends participated in the Barrow-infurness Walk/ Race/ Marathon. Together they ran a Raffle, Morning Coffee, Cake and Bake Sale raising £650.

pril 13 2018 individuals from around the world participated in the 6th annual FND awareness day. Individuals and their supporters across the globe united together in the hope of improving the lives of the men, women and children who battle Functional Neurological Disorder (FND). Thank you to all those who participated. Together we raised global awareness across 90 countries. Lets keep the momentum going and continue the FND conversation. FND Hope website visits 3,900 FACEBOOK page views 1,041 #LetsTalkFND posts Instagram 429 Twitter Impressions 49,733 FACEBOOK and Twibbon profile changes 885

Webinar views

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MARK YOUR CALENDAR and

Duncan P. at the Queen Mary Hospital FND Awareness day event

SEE YOU IN APRIL 2019

Research

Current Concepts in Diagnosis and Treatment of Functional Neurological https://jamanetwork.com/journals/jamaneurology/article-abstract/2682656 Current Concepts in Diagnosis and Treatment of Functional Neurological Disorders Alberto J. Espay, MD, MSc1; Selma Aybek, MD2; Alan Carson, MD, FRCPsych, FRCP3; Mark J. Edwards, FRCP, PhD4; Laura H. Goldstein, PhD5; Mark Hallett, MD6; Kathrin LaFaver, MD7; W. Curt LaFrance Jr, MD, MPH8,9; Anthony E. Lang, MD, FRCPC10; Tim Nicholson, MD, PhD11; Glenn Nielsen, PhD4; Markus Reuber, MD12; Valerie Voon, MD13; Jon Stone, MB ChB, FRCP, PhD14; Francesca Morgante, MD, PhD4,15

Research Review By: Amy Bradley

Introduction

unctional Neurological Disorder (FND) is a highly complex disorder. Although FND has historically been considered a physical manifestation of psychological issues, it is now recognised that this is not the case. Other factors are now considered to potentially have implications for the development of FND. Excitingly, this advancement in understanding has recently been adopted by one of the major diagnostic manuals used by clinicians. Further improvements are also recognisable in the sense that non-epileptic or dissociative seizures are now more commonly called nonepileptic and/ or psychogenic seizures. These terms are a great improvement ‘pseudoseizures’- a term which has frequently been used historically and implies that patients ‘make up’ of ‘feign’ symptoms deliberately. Such changes in understanding and appreciation have been brought about by an increasing body of research. Brain scans and imaging studies show that the symptoms associated with FND are distinct from those presented by malingerers or those intentionally producing symptoms. Further,

it is shown that the intentional production of FND-like symptoms is relatively rare, i.e. people do not ‘feign’ symptoms. This article summarises the content of a recent review which presents a comprehensive, up-to-date compilation of knowledge of the factors underpinning FND and available treatments.

Diagnosis

ecent changes to diagnostic criteria mean that clinicians no longer have to identify ‘stressors’ to give a patient an FND diagnosis. This is a huge progression and represents the changing understanding that not every patient has psychological factors which underpin their development of FND. Progression is also represented by a clear list of positive diagnostic factors such as Hoover’s Sign (a standard test for some FND conditions) which can be used to ascertain whether a diagnosis of FND is appropriate. As such, there is a conscious move towards making a diagnosis of FND based on ‘positive

diagnostic factors’ rather than simply the exclusion of other neurological conditions. It is hoped that such moves will help patients to better understand their diagnosis. Different forms of FND symptoms FND symptoms can take a range of forms, and present very differently in different patients. They include, but are not limited to: • Slowness of movement • Weakness in movements • Tremor • Uncontrollable jerks • Limbs which feel fixed in position • Speech problems and/ or slurring and/ or stuttering • Foreign accent • Dragging gait • Variation in posture

What Sort of Psychological Factors May Underpin FND? The long-standing historical view was that FND resulted from the conversion of psychological distress into physical symptoms. There is still value in this perspective for some individuals, and research shows that the risk of developing FND may be increased by adverse experiences. However, this review article also posits that focusing on potential psychological factors alone has limitations for a number of reasons: • A biological mechanism to explain how ‘conversion’

of psychological events into physical symptoms occurs has not yet been discovered. • Different symptoms are observed in patients who have been exposed to similar environments or experiences. • The time between a patient being exposed to a potentially triggering event and the development of their functional symptoms widely varies between individuals. • Some patients do not have a history of adverse events, and so the psychological theory is not relevant. Although there are some suggestions as to why such discrepancies between patients occur, there is little still known, and there is not complete consensus. Consequently, there is a drive to integrate a range of ideas, both psychological and non-psychological and develop understanding to gather a clearer picture of the true nature of FND. Some theories focus on how the body produces FND symptoms, rather than considering causes FND in the first place. These theories suggest that some of the ways in which FND manifests or presents are determined by how we, as individuals, respond to emotions, how we feel about ill health and what we think that the nervous system does if it goes wrong. This may explain why symptoms may be inconsistent between patients, or why they don’t follow expectations for other neurological diseases. How aware an individual is of stressors, such

as those that may be experienced following a series of abusive experiences, health anxiety or increased awareness of illness is also thought to possibly further influence symptoms in some people. Many people with FND experience difficulties in attention. The nervous system usually provides us with a precise experience of the world by combining the sensory input we gain from our surroundings (bottom-up information) with the ‘expectations’ that our brain has learnt about any given situation (top-down information). The balance between these two sources of information is critical in how we perceive any situation and how we respond. Research shows that the balance between ‘bottom-up’ and ‘topdown’ information in people with FND is often different. It is thought that this may affect the way in which people with FND may perceive their environment and this may explain why people experience sensory disturbances and may be a factor which drives abnormal movements (physical symptoms). These ideas are supported by the fact that many people’s functional tremors, for example, can be improved if their attention is focused elsewhere. What Sort of Biological Factors May Underpin FND? Brain imaging studies show that people with FND have changes in the activity between different brain regions. In particular, when people with FND attempt movements, parts of the brain which are important in regulating emotions appear to be overactive, and those involved in performing movements appear to be under-active compared to healthy individuals. Critically, these differences are distinct from people who are intentionally feigning symptoms for the study. This suggests that there is something fundamentally different about the way in which signals are processed in the brains of people with FND compared to the

rest of the healthy population. Such research also suggests that the reason that people with FND feel that they do not have control over their movements is that the way in which parts of the brain which are involved in planning movements and those which ensure that the right movements occur don’t communicate with each other in a ‘normal’ way. Altogether, the review of Espay et al., (2018) concludes that it is important that a framework of thought about FND is developed. This should take into account the many different factors which could predispose an individual to develop FND, cause FND to develop and those factors which may influence the condition such as genetics, an individual’s temperament, their environment and the functional connectivity between different parts of their brain.

Treatment Delivery of Diagnosis Delivery of diagnosis is critical so that patients understand that they are being diagnosed with a recognised condition and that they feel validated and understood. Positive diagnostic factors can be used so that it is clear that FND is not a diagnosis of exclusion, and it is important to make clear that there is potential for the condition to be reversed with treatment. Multi-disciplinary Approaches Treatment of FND is multi-disciplinary and different approaches are effective for different people- there is no way of knowing which will be most effective. There are a number of ongoing clinical trials which are trying to shed light on the effectiveness of a range of pioneering treatment options, and others are investigating whether it is possible to identify the most likely effective treatment for an individual. If answers to these questions can be found, it would greatly further the development of effective treatments for FND. Fatigue and pain are commonly experienced by patients with FND, and specific intervention for these factors should be discussed if necessary. Further, it is recognised that rehabilitation may need to be specifically adapted for people experiencing pain or fatigue, for example changing the nature or intensity of particular physiotherapy tasks. Treatment Principles for Functional Movement Symptoms Physiotherapy is recognised to have a considerable role for patients with motor symptoms and generally involves many stages over a period of time.

The main strategies involve: • Starting to retrain basic movements using patterns such as weight shifting. • Gradually increasing the complexity of movements towards those involved in automatic activities such as walking and conscious activities such as controlled movements associated with lifting a load. • Using distraction techniques such as introducing a cup of water whilst trying to walk. • Redirecting attention away from attempts to initiate specific parts of a movement, such as flexion of a foot, towards the major goal of the movement, for example climbing a stair. • Trying to trigger normal patterns of movement by using novel tasks, such as walking backward, or movements which are usually performed relatively subconsciously, such as shifting rhythmically from one foot to another. • Combining physiotherapy with psychological treatment. Psychological Treatments for a Range of FND Symptoms Traditionally advocated as a leading choice of treatment for FND, psychological treatments such as cognitive behavioural therapy (CBT), psychodynamic interpersonal therapy (PIT) and cognitive behavioural informed psychotherapy are different forms of talking therapy which can be useful for a range of patients. The specific psychological approach used will differ significantly between patients. For some, therapy may help patients to identify triggers of their symptoms and learn techniques to help manage such symptoms. Alternatively, it may help an individual to change how they react to symptoms, thus making them more manageable. For others, the key may be to manage anxiety, depression or other mental health issues which have occurred with/ prior to the development of FND.

Whilst there is the potential for FND to be reversed, it can be a considerably disabling condition, with an unclear prognosis in many cases. Changes in how FND is recognised in clinical handbooks is a huge step forward. Future progression is likely to come from ongoing research and clinical trials. This will hopefully help to identify which treatment is likely to be most effective for any given patient, provide alternative and/ or additional treatment options and to provide further insight into the factors which cause and lead to the development of FND.

Photo Courtesy: Kathrin LaFaver

Conclusion

IN OUR WORDS Personal Accounst of Living with Non-Epileptic Seizures

Book Review & Interview Here at FND Hope we see saw many people struggling to better understand what’s going on with their symptoms, and feeling totally alone. This collection of personal stories shows that they are not alone. This book is a tremendous resource to provide greater insight into non-epileptic attack disorder, let’s hope that this makes its way to the wider healthcare community. “This thoughtful compilation of personal stories provides a window into the diverse experiences of people with non-epileptic seizures. I highly recommend it for clients, friends, families and professionals.” Juliana Lockman, M.D. Dept. of Psychiatry & Behavioral Sciences Stanford University School of Medicine

Click Here to Watch FND Hope UK’s Matt Birtwistle interview’s Professor Markus Reuber a neurologist and Movement Disorder

Calling all medical professionals: Contribute to a new book in the Brainstorms series. This book will be entitled “Non-Epileptic Seizures in Our Experience: Accounts of Health Care Professionals” and published by Oxford University Press. The book is intended as a forum in which health care professionals can share their own experiences and feelings about their patients with NES. We aim to be inclusive and collect writings from around the world, and from individuals working in a range of different specialities and levels of seniority. Your writing will be used for educational purposes, for instance helping other professionals to improve their understanding of the condition Your writing may also provide insights for patients with NES and help them to realise how professionals feel and understand the problems that they face when treating their disorder. Click here for more information about the book and how to share your account.

PEER L

C a r e r

–TO–

l i v e d

et them take control as much as you can and as much as they can. Fight for the best care you can. With the way diagnosis is sometimes delivered (IE : it’s all in your head ) it’s important you let them know you believe them. They aren’t imagining it or making it up . – Lois D.

port has helped my daughter massively. Be assertive with doctors, don’t let them try to put a ‘label’ on your child that you know is inaccurate. – Cindy S.

y advice is don’t give up and keep fighting for help. Get as much therapy as you can. It takes a long time to recover, but is possible. Use mobility devices when needed to stay on a daily routine and get out and do things. It is hard but I still kept my son in sports and brought my daughter with us everywhere in a wheelchair when needed. Being stuck at home is not mentally healthy. – Marissa S.

here is help out there, but I have learned that he who shouts the loudest & as constantly as humanly possible gets results. Take care not to lose yourself whilst looking after a long term patient with ongoing health issues, and don’t feel guilty for needing time out. – Amanda T.

PEER

e x p e r i e n c e

aster 7 has been taught with the assistance of his OT Alert Engine Gaming. It helps to identify his level of energy and monitor his capabilities to adapt. It uses a traffic light gaging as follows: Green light means he is with functioning and able to perform tasks knowingly and well with energy. He can run, jump, walk, be active. Orange means he is neither high or low energy and has to find activities for himself that will accommodate. At school this means he is able to sit and work, but not exert himself physically. He wears a weighted blanket at this time to help ground and calm. Red light means he is having difficulties with processing and managing his energy. In these times he is encouraged to sit with his weighted blanket, listen to music, lie down or watch tv. Again weighted blanket used but length of time less. Our son also is monitored for nutrition. We have on board for him an OT, Physio, Speech and Psychologist whom attend to him week to fortnightly, also with additional support officers at school. In addition we have a Neurologist, Gastroenterologist, Dietitian, and Allergist on our health team. Our son being highly sensitive to introduced medications, so we are going alternative and natural routes in management. – Angie C

FND WORD PUZZLE By Irene Coleman

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, Selfcare, Giving Back...

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 second issue of our quarterly digital publication To keep this publication 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 six months 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.