So You Have A Diagnosis of FND……WHAT’S NEXT ?

So you’ve got a diagnosis of Functional Neurological Disorder! GREAT – but how quickly, that elation diminishes- well it did for me! I soon had many more questions than when my array of symptoms was initially being worked out.

So there I was, I had a diagnosis, that even my initial neurologist didn’t know much about. She sent me home with the name of a website, medications and lots of referrals. I was paralysed down my right side, unable to use my right hand, loss of balance finding it dreadfully hard to walk even small areas without falling, that was just the tip of the iceberg of what was happening to me! I was totally needing the assistance of my husband…..BUT, I had to wait weeks for my referrals to let the only known treatments begin…..and those weeks seemed to last a lifetime! The treatments did finally begin and yes, I have progressed well but I am still left with bouts of debilitating symptoms that would floor even the strongest of people.

Sorry to ramble, but this is a similar journey for so many people also affected with FND. It’s very frustrating, scary and lonely but finding a GP and neurologist that you can trust, so that you can keep an ongoing relationship with over time is so very important.

This is why, I’ve decided to go public….very public on my healing journey with FND. Everyday, I am involved in my treatments that include NeuroPhysio, OT, speech and psychological therapies. If that’s not enough to concentrate on, I am also beginning to create and launch what will be a globally known research foundation with a connected healing centre. I want to bring thorough research for more reliable ways, firstly for making the FND diagnosis. But I want to then, have a better platform for educating neurologists and general practitioners around the world about how to educate and connect appropriate treatments to suit individual patients. With a better platform for medical doctors, I feel that a much better awareness and support system will be able to be put into play for patients and their carers. There are a number of patient support groups popping up across social media now and I believe these are wonderful links to help people connect with others that are living with similar but different issues with the same disorder. 

However, for me to be able to do this I need a bigger support network. Across, the globe there have been sports stars and celebrities, who have succumbed to debilitating diseases. They have helped awareness and research foundations for their particular medical conditions, set up amazing platforms. I don’t have that profile….but I do have the determination because I am a survivor of this condition and with your help out there, I know we can build people power in bringing what so many that battle FND need for healing health and life.

If you haven’t connected on social media, please do so and let’s beat this beast of a disorder;

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

Walking & Talking for ME and YOU,

Harmoni πŸ’‹

Part 2 – The Healing Journey With FND……..

Back on June 26, I told of my introduction to the invisible illness, known as ‘Functional Neurological Disorder’ with “Once Upon A Time….Living With Invisible Illness”.

Once Upon A Time…..Living With A Body Filled With Invisible Illness. – A Barefoot Goddess On A Journey
https://abarefootgoddessonajourney.wordpress.com/2017/06/26/once-upon-a-time-living-with-a-body-filled-with-invisible-illness/


They were dark times…….many days filled with limb spasms, seizures, falls, lots of falls caused by chronic balance issues. Living with symptoms such as these, left me mentally, physically and emotionally drained and it seemed like no one understood. But, it really broke me when the paralysis down my right side occurred……I had to rely totally on those closest to me. Using cutlery was out, I had forgotten how to do my shoelaces up, my walking gait was non existent if I wanted to stay upright, but what made it worst, was that I could no longer crochet. Crochet was my thing….as it was something I could do…..when I couldn’t do anything at all, so not even being able to do that was like a nuclear bomb had gone off.

How was I going to get better…..how could I heal from this, those were my thoughts, constantly.

As, I had mentioned in my previous blog…..I was discharged from hospital with numerous referrals. A couple of weeks went on, when finally I began to receive home based NeuroPhysio to begin the process of helping me learn the art of ‘functional movement’. My home based physio, was wonderful. She pushed me but only as much as I needed. Over what would be four weeks, she enabled me to be able to sit and stand from my sofa, there was still wobbles and shakes but my brain was picking up signals from the body and I was making positive progress. Walking was very difficult and prior to therapy I only had been given a walking stick, which was pretty much useless. My home based physio was able to help me get a walker. Initially I wasn’t completely in agreeable to this mobility aid….but I soon found that it was a godsend. I could use it to help me progress my sit to stand. Using it to help teach me to formulate a walking gait was brilliant. Over, I think it was six weeks, she had really assisted my confidence towards mobility. Home based was then changed to centre based NeuroPhysio. I was lucky to be able to given another therapist that knew what FND was. From day one, we formed a bond. At the Williamstown Hospital where I was having physical therapy, I also began OT (occupational therapy) and thanks to my physio, I had an excellent OT plan created, allowing me to slowly build strength in my paralysed right hand. It was slow going. Some sessions, would see me move my hand, perhaps 5 cm along the table. But that activity caused such fatigue that I would sleep for a day and a half. NeuroPhysio was able to help me again help reconnect my internal software into knowing that to step I had to lift the leg up and down……up and down, again these sessions were also slow. It’s all progress, though and I learnt that even a little is the beginning of reconnecting my brains wiring to my body’s wiring.

In addition to the physical therapy, I began seeing a neuropsychologist. Again, I was sceptical how this could assist but as time went on, I began to learn that it was a spiralling of many things across my entire life that had caused my software malfunction. I had to work through the abuse that I had endured as a child and teenager as well as the many years living with the chronic combination of illnesses. I began to find that as my mind was being able to be cleansed of all the dark clutter that I had chosen to lock inside me, my body also was able to be cleansed. This psych work was working alongside the physical therapy.

I continue to use the physical therapies with the therapy to help the mental trauma, so that I can perhaps live the life that I most love. You see due to extreme fatigue and still requiring the walking frame for mobility when out n about I can’t work a ‘normal’ 40 hour job. I spend everyday working on healing, with the therapies that I’ve spoken about as well as using an adaptive yoga and meditation. I am also a vegan and I truly believe all my healing modalities are helping me to progress to those dreams and goals of living the life that I love. 

Although I cannot work a normal job, I now act as a advocate and speaker for invisible illnesses. Each day, I get stronger I seek to add more objectives and goals for raising awareness, support and research for illnesses, such as FND. If you’ve been following me, you would have noticed that I am creating a ongoing campaign known as #lightingtheflame for #invisibleillness that works on shining a light on all unseen health conditions. My other campaign is #standingup4FND and that is fully focused on functional neurological disorder and will be linked to my future documentary and book.

Functional Neurological Disorder is an ongoing battle to overcome, as the symptoms flow in and out without any notice. Some symptoms can be lived with, others leave me severely impaired. This disorder, is a illness that very few know about and that includes the specialist medical fraternity. For I and many others across my country of Australia and many other countries worldwide to progress with our healing we need much needed awareness, support and so much more research.


If my story has helped you to understand the FND, please like and share this blog, or alternatively connect with me on social media at;

http://www.facebook.com/TheBarefootGoddessAU

http://www.twitter.com/just_1_goddess

http://www.instagram.com/the__barefoot__goddess

I want us all to be able to walk together, so let’s bring a wave of kindness to stamp out the stigma that exists currently with regard to all invisible illness.
Much love 
TBG πŸ’‹

It’s Christmas Day again, so here is my Merry Christmas 2016 wish for all of you, filled with sparkling kisses and times of good health. If you can, spend some time with your near and dear ones and let them know you care. 

When we share our little Merry Christmas greetings, we help others find that magical cheer too, so I hope you are receiving my cheer today! 

Now, let’s get ready for a wonderful feast for Christmas 2016. 
Much love
Lisa-Raie πŸ’‹
http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Wandering Towards Wellness”

Life Isn’t Fair Sometimes….But It’s About Blowing Sunshine & Sparkles βœ¨πŸ’©βœ¨

Life isn’t fair sometimes, but hey I have found rainbows through the shit and I am ready to blow more sunshine across the globe despite the challenges that somehow find there way to me and through me. Let me explain;

This seems to be way to wander life’s journey. A huge storm cloud breaks over me. The thunder, lightning and rain completely overwhelms every facet of my being, I cry and scream. Then as if nothing has happened- there is a calmness through the darkness I let myself breathe and as I do the sunshine comes through the darkest clouds. As I am breathing, magic sparkles and allows energetic vibrational levels of healing energy to fill every level of my body again. 


You see, I am the sunshine BUT I am also the crazy ravenous dark storm clouds. Somehow, though they mix well together to raise light, love,  kindness and compassion for all of us that wander a life with chronic and invisible illnesses. 

If this resonates with you somehow make sure you like and share it across the world because this will allow us all to walk together.

Also don’t forget to connect with me on my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
Much love 
Lisa-Raie πŸ’‹

“Wandering Towards Wellness, Globally”

What is NeuroPhysio….Treatment Is Available.Β 

Since I’ve been posting about beginning my rehab sessions-I’ve lost count at how many people have messaged me to ask what is this “NeuroPhysio” that you are doing!

Let me explain;

Neurological physiotherapy is a treatment for people who have neurological impairments. It is an exciting area of rehabilitation that merges key discoveries in neuroscience, exercise and movement science. People, just like me with neurological or neuromuscular disorders can present with a number of difficulties with movement issues or challenges that can influence balance, walking, arm & hand function, posture and pain. This form of treatment can help people with dizziness and balance disorders, and those people at risk of falls and I am one of this group of people that this form of rehabilitation is helping. 


This treatment brings in the evolution of Dr. Norman Doidge who introduced neuroplasticity to the world, through his book ‘The Brain That Changes Itself’ a number of years ago. His idea was that our brains are not as rigidly hardwired as once believed, and with therapy, they can change by being rewired. I read this book sceptically positive about this doctors ideas but indeed what i am finding in my own rehab is that the brain can heal, it can change and it can rewire and be triggered to find new circuits and paths through mental and physical activity. Indeed our brains can “…form, unform, and reform in new ways”. 


Beginning NeuroPhysio sessions, I’ve stepped into rehabilitation with positivity  that it will assist me to regain control over areas of my body that have become blocked from functioning normal in my daily life. What I’ve found is that the exercises and techniques that I am having to learn or perhaps relearn are at times exceptionally frustrating. They are exercises, set on teaching the particular parts of the body which have become blocked in their normal functioning behaviours. My particular areas are teaching the right side of my body to again function. The areas worked on are my right leg and foot, which presently due to paralysis are frozen and walking is strained, thus I am needing to use a four wheeler walker to assist with balance and gait structure. My right arm and hand is also worked on, helping to trigger messages to my muscles so that I can again do such things as brush my hair, butter bread, etc. But, I have this inbuilt strength that tells me after being ill for so long that I can’t give up! I’ve managed to come a long way in such a short time and although, the day after each session and if I’ve had a exceptionally full rehab session it may be two days where all my body can do is rest, all it can do is sleep and recover. But, I won’t stop because I know that I can trigger my brain to rework its processes of messaging my body. I will recover,perhaps not in the way that I would like , but these therapies will allow me to put in place new pathways to live the life I love.

                         
I hope, I’ve deciphered the mysteries of ‘NeuroPhysio’ .

If you have found my blog helpful, please like and share and I would also love to connect with you on my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess
“Wandering Towards Wellness, Globally”

Vulnerable & Powerful, That’s Me…..πŸ’‹

I’m sitting here, pondering how is it possible, to be a woman with such deep vulnerabilities BUT yet be so powerful and exquisite in this big wide world!Β Then I have a moment of self-empowerment ;

You see I live in a world where bravery is often only seen through visibly physical things NOT through dark shadows and unseen challenges. But those dark shadows and invisible challenges are what being vulnerable is all about ! This is my story and I discuss daily the weaknesses and failures that make up the shadows and challenges that nobody can see. Being this vulnerable is so very brave and powerful – it takes fucking guts. Having this courage to be honest and exposed when i tell my stories and experiences through this channel we know so clearly as social media will make this journey so much more impactful, allowing awareness and assistance! My stories will start resonating with people and they are!!!

Also I believe we all have stories to tell that will help others in some way. We have experienced situations through our lives that should be shared because others will benefit from it. When you start telling your stories and sharing your expertise because it is helping the people who are listening or reading it, you will be amazed with the emotional connection that you start building with people and the relationships you start developing – because you’re positively impacting their lives. I believe by sharing my stories, that will allow others to share their stories to tell and then together we have allowed our experienced situations benefit many. It is helping those people that are listening or reading and I become amazed by the emotional connection that i receive from people globally – because you see, just by stepping out onto that vulnerable ledge, I’m positively impacting lives.

These stories – my stories, they are raw and they are real and they teach me daily that , I am not weak FOR , the breath of all living things – THEY MAKE ME SO COURAGEOUS & BRAVE and that’s POWERFUL!

And it’s why this little woman who is me and so very vulnerable can , will and is so very powerful across the globe and then some fucking more…..#boom #vulnerable #power #ivegotitall πŸ™πŸ»

Resonate with this , like, share or comment across one of my channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

“Wandering Towards Wellness “

The Day Begins With Breakfast.

Living with chronic invisible and debilitating illnesses leave me drained, lethargic and so exhausted! There have been many days over weeks, months and years that I’ve awoken and have not been able to begin with breakfast. I have learnt through experience and study, that skipping this first meal of the day is harmful for health. There is a reason that, it’s called ‘breakfast’, because it’s the time where we all need to break the fast that has been from the previous night. Through my healing journey with Functional Neurological Disorder and other debilitating chronic illnesses, I want to help others be aware of the importance of looking after ourselves so much better.

It has been proven through research that the skipping breakfast causes many of the major illnesses that we all know about – these include; obesity, high blood pressure, high cholesterol, and diabetes and many others. But did you know that skipping breakfast can cause harm to our internal organs and muscles if we are not energising our cells and hormones. This can cause many other illnesses that many know very little about. Learning to eat a healthy morning breakfast benefits us with balancing energy levels for memory, body and brain.

Morning breakfast is one way that we can restore our health and rebuild a life that has been debilitating destroyed from chronic illness. If we don’t eat breakfast, then by the time the middle of the day comes and we haven’t correctly fed ourselves , our internal system is becoming imbalanced and this can cause such a negative impact on brain and body the more we wander a path using wrong nutrition steps. I know, because this was me. It left me with a distressed digestive system and body furthering the impact with worsening health. 

So my journey to wandering towards wellness has had to change, so that I can begin to live a life that I love. Let me tell you, there are mornings that eating is the furthest thing from my mind, if I haven’t slept well or if pain is at high levels. But, I am reeducating myself to know that a morning breakfast routine can not go missing on any day. A good start tothe  morning, may begin with different groups of foods, these may include hints like;

  • Toast 
  • Porridge 
  • Eggs
  • Yogurt 
  • Fruits 
  • Juices or Juice smoothies 
  • Coffee/Tea
  • Warm lemon and coconut oil water

Perhaps, if you need to be up earlier in the morning for an appointment and instead of skipping your breakfast you could plan foods or drinks that you can take with you. These may include;

  • Juices/Juice smoothies 
  • Chia puddings
  • Yoghurt & fruit 

What is important that you find a nutritional content that works for you and your body. For me personally, I now will be starting each day with a freshly made juice or juice smoothie and what makes it easy, is that after I have shopped I will food prepare all of my weekly juices in freezer bags, so that no matter how I feel I only need to go to the freezer and get my portion out and blitz it in my juicer or blender. Breakfast is made in a instant and most days I’ve given my body so many nutrients in order to heal and regain energy and health.

Don’t keep skipping breakfast which is bad for health. Start a new routine that will give you a reenergised energy for each and every day and I will certainly drink to that.
Much love 

Lisa-Raie

AKA (The barefooted FND goddess) πŸ’‹

Please connect with me here or across on my social media channels;

http://www.facebook.com/IAmFNDAware

http://www.twitter.com/FND_Goddess

http://www.instagram.com/fnd_goddess

Snapchat πŸ‘» @simply_lisaraie πŸ‘»
“Wandering Towards Wellness Globally”