On Sunday 3rd October, I will have 24 hours to run 26.2 miles, as I am going to be completing the 2021 Virtual Virgin Money London Marathon to fundraise for FND Hope UK. This is the world’s biggest ever annual marathon and it will be occurring virtually this year, because of the COVID-19 pandemic. Each participant will be taking part locally and I will proudly get to complete it across Brighton and Hove. I chose running as my fundraising method as I am fortunate enough to be able to prepare for it, whilst appreciating the benefits of exercise for my overall wellbeing. This is my first time training for a marathon and it will definitely be a challenge, but fundraising for this worthy cause is the least I can do to support the FND community.

I am grateful to have recently had the opportunity to spend a year working as a physiotherapist, within a national specialist rehabilitation unit, with a pathway specifically for people with FND. I was privileged to contribute to their personalised rehabilitation journeys. Due to the high prevalence and my professional interests in this area, I am incredibly passionate about improving the accessibility and quality of care for everyone with FND. Ultimately, I hope to take this opportunity to contribute to the mission of FND Hope UK; to promote awareness, support affected individuals, and advance research.

If you would like to donate, please do here: https://uk.virginmoneygiving.com/Rory4FND

#FNDaware #FND2021 #LetsTalkFND

• I am doing the Kiltwalk this year for 3 reasons to raise awareness of FND, raise money for FND Hope UK and to challenge myself.I am a 62 to year old retired man who lives in the small village of Kintore in rural Aberdeenshire in NE Scotland (10 miles north of Aberdeen). One of the contributory factors behind my decision to retire early from the Oil and Gas Industry was what has now been diagnosed as FND. I am married to Elaine and we have 2 grown up children Stacey and Adam. Stacey lives in Glasgow and Adam lives at home with Elaine and I. Elaine is a real rock and great support to me (she has to put up with my mood swings, behavioural fluctuations and other FND symptoms). Stacey and Adam are very supportive too. I now spend my time keeping myself, Elaine & my Family healthy, being on the Board of Trustees of a small local charity who support people with long term health conditions, mentoring/facilitating a small mental health peer support group and volunteering/helping others (I have volunteered with Royal Voluntary Service, RVS, since just after I retired). I have had a good life and now feel a strong urge to give something back. However I am what one of my Consultants called a “doer” and I MUST pace myself accordingly!It’s difficult to know when my FND Journey started since my memory is not good, things have been changing and there have been many ups and downs. My guess is that it was about 16 years ago (and that frustrates me because I can’t remember and I don’t do ‘abouts’). I think it started with strange sensations in my feet and the lower part of my legs, then other symptoms like fatigue and Cognitive impairment came and it progressed to symptoms all over my body. My life recently has been quite stressful, including bereavement, job insecurity and 2 unexplained car accidents where I might have blacked out (thankfully nobody was hurt – just lots of bent metal!).I started seeing a Neurologist in Dundee (~70 miles away), was then transferred to Aberdeen and I have had a lot of tests – all negative – including 3 MRI Scans & a Lumbar Puncture (I wouldn’t wish this on my worst enemy!). All the while my brain was racing with thoughts like “What Is it?”, “Could it be MS?” (my Mother died with MS), “Could it be Parkinsons?”, “Could it be CMT?” (my Sister in the USA might have CMT), “What could it be?”. I have since found out that having all these thoughts, and ‘Googling’ like there was no tomorrow, is called Health Anxiety (another FND symptom). All the while my Neurologists were being very professional and not speculating, at least to me! Something changed recently and my Neurologist started talking about Functional symptoms and directed me to the excellent neurosymptoms.org website – could it be that I had made a list of my symptoms and given it to my Neurologist? The rest, as they say, is history!!

  Why fundraise for FND Hope UK you might ask? Firstly I was directed to FND Hope by the consultant Neuropsychologist who helped to diagnose me (I also believe that she is also one of FND Hope’s medical advisors). I have found the charity absolutely brilliant and have lots of useful resources. I have just found out recently that next month, April, is World FND Month. Now is the time to give something back, help others and help to raise awareness! Also there are not many other FND charities – maybe that says something about how little is known about FND??

  The Kiltwalk is run every year all over Scotland at about this time of year. It raises money for many charities registered with it and all monies raised are matched/increased by 50% by the Hunter Foundation. This year because of Covid restrictions the Kiltwalk is being run virtually to keep the crowds down. I am walking with a small group of fellow Rotarians from one of the local Rotary Clubs that we are all members of. We are aiming to walk 10 miles in rural Aberdeenshire near where the Rotary Club (Westhill & District) are based – 5 miles one way, a rest/refreshment stop and 5 miles back. I am now in training.

  I also have a diagnosis of Peripheral Neuropathy (PN) which I got before FND was suspected. My PN affects my feet, lower limbs and balance, along with generalised muscle weakness, so you can see that, along with my FND, the Kiltwalk is likely to be a significant challenge for me. I am determined to do it!

  As FND Hope says its “The most common condition you have never heard of!”. I had never heard of it until I was diagnosed recently!!

  Wish me luck!!

  If you would like to sponsor Steve, please do so here: https://virtual.thekiltwalk.co.uk/fundraising/ScotlandsVirtualKiltwalk2021-StephenPortelly