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Help Abbie on her FND Journey!
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My name is Abbie, I am 25 years old, working in the health and social care sector as a support assistant and a personal assistant for a young lady with additional needs. I have traveled all of Europe and Australia, meeting some amazing friends on my way and making memorable stories which will stay with me forever. I enjoy working out at my local gym where my personal trainer Jess has supported and encouraged me to achieve a level of fitness which I never thought I could achieve. Well that was my life before the 17th July 2021 where everything changed overnight!!
I was admitted to hospital after suffering a migraine- something which I had never suffered from previously, this changed dramatically over the next few weeks. I underwent a number of tests and was later diagnosed with complex FND - functional neurological disorder. How my life has changed overnight . I spent 4 months in hospital and then discharged to a residential home as I require 24 hour care.
My life now looks like this :
I suffer from daily non epileptic seizures which can last up to 6 hours which often results in me injuring myself.
I have paralysis from the waist downwards and I am unable to walk and I use a wheelchair.
I am unable to get dressed independently and need care staff to dress and provide personal care for me.
I am unable to go out by myself as I always need family member, friend or carer with me.
I have a locked right hand where I am unable to use it.
I have a extremely poor sleep routine.
I suffer pain all over my body.
These are all symptoms of functional neurological disorder - FND.
I have no answers as to why these events have taken place, FND is a very misunderstood condition which as you can see has left me from being totally independent to needing 24 hour care. There is no medication to cure FND which is very hard pill to swallow. Recovery from FND is very different from person to person, but with the right rehabilitation programme FND symptoms can sometimes be controlled but there is no guarantee which leaves my future looking very unknown.
Throughout my recovery so far I have had a great team supporting me, ward 43 @ the RVI hospital and a residential care home in Northumberland. I am now looking to gain access into a rehabilitation program so I can start and learn to become independent again.
This has been extremely difficult. FND is a condition where rehab is not readily available with only a few specialist centres in the country and with waiting lists up to 2 years. We have had to fight to access funding for a private neuro rehab centre, but with the support of my parents I have now been given the funding. Now the hard work starts once I start rehab.
I have discovered during my diagnosis that FND is not a well funded and understood condition where many medical professionals have never heard of it. Many people who are diagnosed with FND are not supported at all, they are simply told to go away and look it up on the internet. This has to change, we live in the 21st century and for such a dehabilitating disability we should all be offered the same level of care to enable us to have the same rehab recovery as other more commonly known disabilities and conditions.
I am hoping that with the help and support of my family, friends and the wider community you can help me in my road to recovery by helping me achieve a few goals I have:
- Return back to my flat and continue living the independent life I loved - I will need my flat to be accessible for my wheelchair, and an accessible bathroom.
- Have an adventure - Go on holiday, being in a wheelchair will be a totally different experience to what I have experienced in the past but I don’t want to stop doing what I love just because of FND.
Please join/help me in raising the awareness of FND functional neurological disorder - click on the link below to find out more information on the condition and the great work they do and the support they offer. https://www.fndhope.org.uk/about-fnd-hope/fnd-hope-uk
Any money raised, I will make a donation to FND Hope to help them fulfill their mission to raise FND awareness, patient support, and advance research.
Thank you for taking the time to read my story.
Abbie x
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Organizer
Clare Potts
Organizer
England