Finding the fun in FND

My wife, Jennifer, has suffered from chronic back pain for years, ever since the birth of our first born. It comes and goes and it's something we've both had to live with.
However just three days after her 45th birthday she was suffering more than ever and stood up to go to the bathroom. On her way back she was suddenly struck down with muscular paralysis - total refusal of the legs to obey what her mind wanted them to do. She could stand, but not walk and was stranded in the hallway. Aided by my son we managed to walk, drag and carry her to the car and get her to A & E where after almost nine hours she was assessed and admitted to the hospital. During this time her legs were in constant muscular spasm, shaking and rising uncontrollably, Naturally we were both worried. What the hell was happening? She was in acute pain and her legs wouldn't go back down, even with me trying my best to help get them into an comfortable position,
The following day when I attended the ward to visit Jenny, not only were her legs in uncontrollable spasms but her arms had joined in too, in a slow motion dance fever. Over the next nine days she had cat scans, MRI, X rays, lumbar punctures to test spinal fluids, blood tests, urine tests - they checked everything, but physically all seemed fine. There was no brain damage, no spinal damage, not even the trapped nerve we suspected with the acute hip and back pain, So what the hell was going on?
The hospital seemed as clueless as we were - some unsympathetic nurses suspected she was putting it on, or imagining it. As if! The last place she wanted to be was in the hospital. If you've ever had to spend even one night in hospital with the heating to hot, the air conditioning too dry and the noise that other patients seem able to create then you know where we are coming from here. When you are ill the hospital is the last place you want to be!
After 9 nights Jenny was discharged with "some sort of psychological issue" and the promise of some psychotherapy appointments to follow. Not exactly the reassurance you need when it looks like you're having a stroke and a fit at the same time.
She was discharged with a Zimmer frame to walk with, and over the next three weeks or so she progressed from walking with this, to walking with a stick, to walking unaided again. Things we looking good. Whatever had affected her, maybe it was just a temporary blip. She was tired, and sleeping a lot and very tired but getting though the day. We put the fatigue down to the medication she had been prescribed.
Then one Sunday she woke late and had skipped breakfast and was feeling tired and her legs had started trembling a little. She sat down to make a sandwich, and I was watching as she tried to butter the bread - her hand was rebelling and she was fighting it, the butter knife swaying back and forth but not quite reaching the bread. Something wasn't quite right for sure...… and moments later she called my name asking for help, but her voice had dropped in tone and was slurred. Her face had dropped on one side, her speech thick and slurry, and her arms and legs had begun those dance gestures again. Our daughter Emma was home from University for the Easter break and she and Thomas our teenage son helped me get Jenny into the front room and onto the couch. A call to 111 NHS lead them to call out a paramedic as I described the symptoms and history. I had expected maybe a home visit form the on call doctor. Instead I got two ambulances and four paramedics!
A trip to A & E followed  although this time we were expressed through Majors instead of going through Triage on the Minor injuries side of the hospital, and Jenny was quickly admitted to the Acute Assessment Unit.
Over the following days she was reassessed and suffered further episodes of these weird muscular spasms. They looked like a cross between a stroke and a slow epileptic fit, with chronic muscular fatigue and general tiredness thereafter. Speech was affected, although Jenny was fully aware of the events during and afterwards. By pure chance the Consultant Neurologist was doing his rounds and was examining Jenny, then her normal self, when one of these strange episodes began. From his observations he was finally able to diagnose the problem - Functional Neurological Disorder (FND), specifically Functional Dystonia.
In  explaining this he likens the brain to a computer, which is what it is essentially. In this case, Jenny's Hard Drive has become either full or corrupted, and the ROM is full with the RAM trying to take over all tasks, but without sufficient processor power, hence the scrambled signals being sent out to the limbs.
So, now we have a diagnoses, what is the prognosis? Well not good news. The condition is untreatable via medication or surgery and may last indefinitely. Or it may cure itself tomorrow, or next week or in ten years. Who knows? Retraining the brain to operate the ROM and RAM differently and defrag the hard drive to let the processor work more efficiently is the answer, but how do we do that?
For now Jenny is left with muscular pain and weakness and bouts of seizures and muscular spasms lasting anything from 15 minutes to 15 hours, with speech also affected. When she comes out of this she is her normal self, although tired. During these bouts I feel helpless to do anything to aid her, except giving reassurance and holding her hand - that seems to help, just that human physical contact and stopping her hands rising up of their own accord seems to have a calming influence. FND temporarily takes away the beautiful young woman I fell in love with, leaving the twisted and frenetic body of a stranger, but Jenny is still there beneath it all and rises above it at the end of each episode.
So returning to the title of this episode of my blog, Finding the fun in FND. Well we are maintaining our sense of humour to help us through these difficult times. A few years back Pete Postlethwaite and Thora Hird starred in a film called "Lost For Words" in which Thora suffered a stroke and some mental health issues which her son, Pete had to come to terms with. Thora's character had picked out a care home called Springfield where she wanted to spend her last days, but after her stroke, with her speech and cognitive functioning affected she couldn't tell Pete the name of the place she wanted to go, the word always came out as Spongo. It's a sign of Jenny's sense of humour then that even as she struggles with her speech she refers to her episodes as her "Spongo" moments.
I have decided to write this blog in the hope that it may help anyone else struggling with the early stages of FND to diagnose and understand their condition as it is little understood by the medical profession and difficult to diagnose.
More to follow soon.