George had an accident at work when he hit his head. This led to a worsening of a chronic pain problem and then FND with walking and speech problems. He explains how it took him a long time to get his head round the diagnosis but how eventually he did and is now making slow progress.
My name is George I am 55yrs old and I have Functional Neurological Disorder (FND). Sounds like an Alcoholics’ Anonymous introduction!
I am not very good at putting things into writing but I’ll give it a go anyway. My symptoms started after I had an accident at work, which would have been about Feb-Mar 2016. I was an HGV Mechanic I was in a pit inspecting the underside of a truck, I was on my way out from underneath the truck but I stood up to early an cracked my the top of my head on a 4inch box steel beam behind the front bumper of the truck. This caused me to instantly drop to my knees whilst pins and needles ran all the way down my body from my head down through my arms to the tips of my fingers and on down through my legs, after a short period I slowly tried to move my neck and arms after which I got up and just returned to work and really thought nothing more about it.
After a couple of weeks had passed I started having problems with my neck and right shoulder my neck and shoulder being stiff and sore constantly and I also started to experience numbness and pins & needles running down my right arm and into my thumb and fingers of my right hand. Other symptoms where dizziness whenever I looked upwards, it carried on like this till on the 6th June 2016 I went to work as normal but I just didn’t feel right I couldn’t put my finger on it I just felt rotten . I collapsed at work and was sent to hospital suspected stroke my speech had got slurred and hesitant, I had a tremor in my right hand and leg weakness in my right leg, and an altered gait. My walking had become laboured and difficult.
I underwent scans and tests the scans didn’t show anything and I was told I had experienced some sort of functional episode and I was discharged and sent home the next day. I went to see my GP but she didn’t have any real answers so she sent a referral to the Neurology dept at the Western General Hospital.
During the months that followed I had some difficult times. I couldn’t walk. I knew what I wanted to do but my legs just seemed to do their own thing, and the harder you tried the worse I seemed to get. Not knowing what was wrong with me, didn’t help. I began to stress and worry about not being able to work, how to pay the bills and the mortgage I had all these thoughts running through my head and I didn’t have answers. Six months I sat in my living room and looked out the window and counted leaves on the tree opposite my house. It was a mammoth task just to go to the loo, I slept in the living room on a reclining chair because I couldn’t get up and down the stairs. My wife had to do everything for me, help me wash, help me get dressed help, me to and from the toilet. I found that very hard to take relying on others to do things for me I don’t know what I would have done if it wasn’t for my wife, She cared for me as well as going to her work. She deserves a medal!! This period really was a difficult time.
The first Neurologist I saw at the hospital was really the first Doctor who explained what she thought my condition was (FND) and that she was going to refer me to another neurologist who she said was the expert deals with this condition.
I started getting physiotherapy at my local Hospital, but after some weeks had passed my progress started to decline and I was admitted to Hospital where I met the second neurologist for the first time. He explained about FND and the various symptoms and how these could be treated. I got intense physiotherapy and speech therapy and I had my medication re- viewed.
The physiotherapy was hard but the team were very good. They were all very friendly we all got on very well, had a laugh and a joke I personally found it a great help after three weeks.
I was up on my feet and learning to walk again, I could climb stairs it wasn’t easy but I could do it. My speech was improving I was heading in the right direction.
It hasn’t been easy I haven’t always seen eye to eye with my neurologist on certain things and I’ll admit it took me a while to get my head round this FND and what was going on with my body and how to face the new challenges ahead. I think my wife understood it better than me at first. I’ve had my good days and my bad days but you have be positive and take things one step at a time, be stubborn don’t give up!! Learn to recognise the triggers that make you feel worse and try to avoid them. Don’t push yourself to hard this can set you back too. Everyone is different but for me stubbornness and determination works .
To the Doctors, Physiotherapist’s, Health care professionals I know you are busy people and you probably see hundreds of cases a week, but put yourself in the patient’s position try to understand what that person is going through.
I know from my experience to go from a fully active person who worked six and seven days a week for most of my life. To not being able to walk or to talk properly or even to hold a cup without spilling it is very hard to take and to come to terms with. I think the very fact that FND Isn’t that well known certainly doesn’t help when dealing with insurance companies and social security benefits etc; I had an critical illness policy in place to cover my mortgage that I had paying for years and when I tried to make a claim they refused the reason was (they didn’t recognise FND as a real condition). More definitely needs to be done raise awareness about FND. This is why I want share my story to help raise awareness and to help others who might be struggling in coming to terms with their diagnoses.
I would like thank my neurologist and all his team of doctors, nurses, physiotherapists, speech therapists, and all the physios at my local Hospital for all there help and continued help and support as I continue on this new path in life
Never give up don’t let it beat you !! George.
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