Brendan Buchholz‘s Story
I was diagnosed in October last year as having functional neurological disorder. I didn’t know what this was or what it meant. In August I woke up one afternoon after feeling slightly off, with a massive vertigo attack. This vertigo lasted for months and during that time along with many scans my symptoms began to change. I didn’t realise that I was struggling my speech until it was pointed out to me by my parents. I didn’t release I had no strength in my arms or legs until I went to hospital. I knew very little about what was going on with my body and I was fatigued every day. I used to be a national business and education support manager in a large corporate firm. But since then I have lost my job, and have been unable to work since. But, it’s not all bad, I am taking things one day at a time, and I appreciate life more. I have learnt to let go of the fast paced society of what success is meant to breed and realised that success comes from within and is not money oriented or the statue of your career. I am know playing and recording more songs than ever, and I am using my IT knowledge and creative flair to help spread awareness for FND by making videos and being a part of a team that is experiencing the same feelings I am. I feel like I belong, I know there is hope, I know that some people can get better, and I know deep down even if I don’t, that’s ok, everything will work out and I will continue to take life as it comes. I will continue to appreciate nature and not consumeristic opportunities. I will sacrifice the monetary gains and possibilities of my future to enjoy life while I can and see the world for what it is, and most importantly, I will continue to love those who have supported me and help support them back. FND is not the end of my life, just another chapter. How I choose to deal with it, will be what defines me. And I choose to be at peace with myself.
Jane Cole’s Story
After 6 years back pain and a radio frequency denervation which is still working 18 months on. This may have been trigger but that’s not the important bit here really…. I developed left foot drop, severe left leg weakness. I went from an fairly active 46 yr old lady with terrible back pain…but walking ok…to being pretty much immobile at times…with a walking stick to get about..leg muscle spasms, cramps….three neurologists…later I saw Prof Mark Edwards in London specialising in FND. The utter relief after the appointment that finally someone so kind, caring and knowledgable really understood what was going on with my body was amazing. I’ve now had 5 days intensive Neuro Physio with Glenn Nielsen under Prof Mark Edwards a month ago and within days he had me waking on a treadmill:)..nearly cried with joy. …I would say my daily pain is 2 out of 10 and not a 10 out of 10 like before ..I’m not using my walking stick anymore….enjoy swimming and am improving on the treadmill at the gym. ‘Pacing ‘ is still a challenge…it’s not a absolute fix BUT they have given me amazing techniques to help me so much. I’m not a dramatic person, but feel that I have my ol’ life back and I’m eternally grateful. I just hope you all found the right treatment to help you eventually too…stay determined but hopeful…thinking of you all. Hope this is useful. Take care
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Joanne
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Nicki mc’s Story
Working full time, doing crazy shifts I had a ‘normal’, hectic life. I’d play in a band in front of big
crowds. I’d recently moved in with my partner and my daughter liked him a lot. One day I fainted at
work, a couple of days later I fainted again. These faints were becoming more frequent. I decided to
get checked out. As soon as I walked into the doctors I had a tremendous shooting pain through my
right temple and I felt as though I had just stepped off a roller-coaster. Next thing I knew I was being
starred at and had kind of wet myself! I had had my first seizure. The doctors said it may have been a
faint with a shake?! They sent me home. I had 5 more that day and my partner ended up calling an
ambulance. The hospital had no idea what was wrong with me. I was sent home with the aftercare
advice being ‘just a bit of tlc’. After all the standard tests I was told I had non epileptic attack disorder.
(fnd). The only medical advice I was repeatedly given was ‘oh well… At least its not epilepsy’. OK that
might be true, but at least you can control most epilepsy! I tried to just plod along, but ended up
having to quit my job. I worked with vulnerable young people, which was quite dangerous at times and
so couldn’t risk having a seizure there. Every day I am having between 4-22 seizures. As I started to
lose all confidence about going out alone, meeting new people and basically having any quality of
basic life I fell pregnant. I had tried to carry on the gigs, but the fear of having a seizure in front of
everyone was really hard to manage. There were times that I had to run off stage mid sentence for a
sneaky spazz out!! Yep it was probably even more stupid that it sounds. My partner managed to talk
me round and vowed to help me with the baby. Realistically my partner works 50-60 hours a week, so
it couldn’t work! Never the less I continued with the pregnancy. At 22 weeks pregnant I had a seizure
on the stairs and fell all the way down. I ended up bleeding down below as well as smashing my face
and legs. The hospital were shocked at how I was just living /existing like that!! The hospital got in
touch with adult social services, they didn’t take my case as… ‘i wasn’t pregnant enough!!’ anyway I’m
ranting a bit! Since the daily seizures I can suffer with temporary paralysis, loss of vision, excruciating
pain, vertigo, and exhaustion. I’m only 29 and have the quality of life of an 80 yr old. People (including
health professionals) have never heard of this condition! I try so hard not to let it beat me!!! My baby is
now 4 months old and I still have multiple seizures a day. I just do my best to get on with it. I have put
myself on a clinical trial, so hopefully things will improve. I feel as though I have fallen from Grace and
that I’m in a never ending black hole. Please help raise awareness! I’ve come across neurologists that
have never bloody heard of it before! (That doesn’t fill you with confidence!!!! ) Xx
Michelle Tuttle’s Story
In October 2014 I was in a career I loved, extremely fit (kick boxing training 4 hours a week), and
looking forward to the holiday of a life time a couple of weeks ahead. Then on 22 October I collapsed
on the way to work with what appeared to be a stroke. My life changed completely that day. I was no
longer able to continue with my career, I could barely walk let alone train or kick box and we had to
cancel the holiday of a lifetime that we’d saved all year for. My current diagnosis is hemiplegic
migraines with a functional neurological disorder. When I saw the opportunity to share our stories on
the FNDHope webpage during Awareness Week only two parts of my story came to mind. They are
the aspects I think can help others the most: whether they have FND, Cancer or perfect health. I can
look back over the last 18 months and, if I choose, I could describe it using events and memories that
will make you believe it was the worst 18 months of my life: And that would be the truth. However, I
can also look back over the last 18 months and, if I choose, I could describe it in a way that would
make you believe it was the best 18 months of my life: That too is the truth. The day I realised that the
way I view my life is under my control was the day I learned to start to like my life and myself. With the
understanding that there are still positives and that I can choose to concentrate on those came an
enormous level of power and control: Something my life had always lacked. The details of my story
don’t really matter. We all have negative and positive experiences. All of those experiences are
equally valid as everyone’s frame of reference is different. So, yes, I have lost an incredible amount
over the last 18 months. But I’ve gained so many things that I never thought I would. And although I
would love to regain my losses I am now, possibly, the happiest I have ever been. Thank you for
taking the time to read my story. I really hope it can help someone… Sorry, I nearly forgot to pass on
the second thing I learned through my story: Always, always take out travel insurance….