Author: David Spencer

I have always believed in serendipity. Most of our modern day understanding stems from such events. 13 months ago I had my first seizure sequence. I was responsive during this sequence and thought that I had had a stroke. As did the paramedics as they rushed me to hospital.11 days later I had a further seizure sequence. More violent in nature and I was unresponsive. It took the entire stock of diazepam from two ambulances and a further car based paramedic to stabilise me. I was declared status epilepticus. Not a good status. I spent five days in hospital having every test known performed. I was discharged with an unknown prognosis. From day one, I approached the situation in true Appllo 13 mode ‘what have got thats good with the vehicle’ and focusing on ‘let’s work the problem not make it worse’. I began my science project collecting data for analysis and figuring out what was happening and how I could manage and reduce my seizure activity. The support I received from Miranda Emma, Sam, Antonio, my wider family and work colleagues was and remains phenomenal. In the past 13 months I have had 618 seizures. My last physical one being 79 days ago. My last absence 18 days ago and the probability of me having a seizure sequence is now at 0.1 per day. But where is the serendipity. Well part of the medical team is based at St Georges in London. This is one of the two UK specialist centres who help people like me with my types of seizures. Only 4-12 in 100 000 people will experience them. Today St Georges acknowledged that the approach I have taken and the methods I have used to reduce my seizure activity is a good one. I have been invited by St Georges on a zoom call next week to share this with other patients who experience the same so that they may hear about this and hopefully take some comfort and potentially learn methods and mechanisms which may lead to an improvement along their journey. Serendipity.

The good thing is that the story as it all unfolded is already documented.

Arrived polis in Cyprus.

This is the fourth flight trip abroad since seizure onset.

No seizures before during or after a 4h flight.

Total journey 12 hours door to door zero null none seizure activity.

Happy as another sequence of reducing number in an enviromnent with lots of triggers. Noise mainly.

Getting ready for the next step of bringing together all of the elements of my little science project.

The data is promising.

Current daily probability is now at 0.15. Yes, 0.15 daily probability.

Plus, it is now 73 days since my last full blown whole body seizure.

I still have absences and what I call tremor seizures, but they are markedly reducing as I apply the same process to these as I did to my all out physical seizures.

I figured out a conscious absence interrupt mechanism.

Me thinks, I am making good progress on reconfiguring the neural network.

The process of the neural disturbance leading to a seizure event is being inexorably deemphasised as a valid physio biological response.

Now where are the tickets for that plane. Ah, here they are.

We fly again on Sunday.

As I always said, neuroplasticity was/is remains the key.

Draft preface for the upcoming book.

A new friend joined my life on 11th April 2021. Since then, this friend has manifested itself in excess of 616 times as seizures or sequences of seizures.

They are functional neurological events. 

They are not thought to be per se, a consequence of, or have cause to, damage the physical entity which is the organ we call the brain and its associated nervous system. 

However, in my case, their onset followed a severe and chronic period of ear infections suggestive of an acute trauma to the overall sensory system.

There is a detailed technical book called Sensory Integration which may be useful background reading. This books explains how the brain assimilates all of the sensory processing the brain has to for Sensory Integration to fulfil its objective.

It also explains some of the pitfalls when Sensory Integtration is not achieved or is interrupted by the process of neural disturbance I call my seizures

As individuals were are all, to a lesser or greater degree, predisposed to have some form of neural disturbance in our lifetime.

The transition or handover to differing neural nodes within the neural network happen daily. From wakefulness to sleep and vice versa.

We all have moments when we are zoned out, not there, off with the fairies.

This is just about being human and our complex adaptive amazing neural network.

Seizures are extreme manifestations of these transitions. I also have two major predisposing factors which amplify my overall predisposition.

I have a REM Sleep disorder which statistically is an early red flag for Parkinsons. A movement disorder

I was advised in 2014 that I would develop a neurological disorder within 10 years. The statistical probability of this was 75%. A high probability.

I am also characterised as meeting the criteria for Aspergers which has challenges with Sensory Integration and adds further statistical probability to the 75%.

They are genuine disturbances within the way the brain’s neural network works. These disturbances manifest themselves as both physical and absence seizures.

Neither are fun. They take a lot out of you.  Both take varying degrees of time to recover from. The absence seizures are my bete-noir.

There is no known cure.

I firmly believe in the statement that it is possible to learn how to manage their impact.

To learn the major trigger events and the preceding aura types of a seizure.

My seizures do happen, they are real and since their appearance, I have worked really hard to control them and not vice versa. I am also of the mindset that they will not define me.

This book is about my journey with seizures since that time. What I have learnt. What has been the impact on my life and those around me.

It is hard and I must forewarn that this will not be an easy read, but I am hopeful that some ideas may be taken forward.

As context, the two charts below show my progress in managing my seizures and a very simple chart I use to predict the daily probability of my seizure activity.

This probability is based upon the general principles of quantum mechanics. I have further developed this model to apply against neural networks. This is not shown here.

To experience is to live, and that is our purpose, whilst we await for our telomeres to finally unravel, and we depart this oasis which sits in the vastness of the universe.

Dedicated to my wife Miranda who has had to deal with my decline and without whom I would be lost. And to my two wonderful children Emma and Sam who have both taught me so much.

Their unconditional love has been deeply felt and given to me great comfort and energy.

Copyright ©️ David Spencer 1.5.22

In response to a query on the UK FND site.

trying to get my head around a recent diagnosis. Is it really a rare condition as google says? ‘According to the Journal of Psychiatry and Neuroscience, FND occurs in 4–12 per 100,000 people.’ But it is the second most reason that people visit the neurologist.

My response:

Statistics are at the population level. So it is rare.

A small number 4-12 per 100k in the whole population. When you then just use the smaller sample size of people SEEN in neurology clinics the ratio naturally increases. At the same those wanting funding for research big up the number SEEN in neurology clinics to add weight for their funding grants.

Which is why it suddenly becomes the second most common condition SEEN in neurology clinics.

The reality is it is misunderstood and thus underdiagnosed and the number is small per 100k population.

Acid test. Before diagnosis how many people had actually ever heard of the name.

I had not and I am 59. So to my mind the condition is rare however you interpret the meaning of the adjective rare. Just my tuppence.

As a further analogy classic Kanners autism defined in 1943 is rare.

Now it is understood that ASD or HFA is a spectrum disorder.

Asperger had a different take on it again in 1943 but his work was not translated from the German text until 1979.

As an aspie I can relate to the frustration people have whilst medical opinion coalesces and agrees worldwide at to the correction definition in the dsm and icd at to what is FND.

Jon Stone is pushing all the time with the redefinition.

What do people mean when they say that the brain is innately neuroplastic. It means many things.

But how do you demonstrate it.

Well, consider the following diagram as to how the brain unlearns the process of entering a seizure event based upon a neural disturbance.

Long way of saying, I must be doing something right and this is just the probability.

I have a better one showing the actual events. I’ll save that one for the end of the month.🙂🙂

Beautiful relaxing song.

How do you celebrate the first anniversary of living with The Insidious Little Bastard.

You make sure that you have had a quiet day. Around late tea time you sit down for a meal.

Wait. What happens then.

First the aura appears rather than a cake with candles. Then seizure one and then number two.

After that, off to bed feeling jaded.

Had to happen.

Posted to the UK FND support Group

It will be my first anniversary of functional seizures on Monday. What a year. Lots to learn and to put into practice. Well how am I doing. Below is a simple chart of seizures. Physical blue and absence red over the year by month. In summary a pleasing end of year report. More to do but the direction of travel is the right one for me. This is my unique profile. Everyone’s profile will be unique to them. I make no bold assertions or claims. These are just my experiences.

Believe in yourself. Step by step. Avoid boom bust. Practice neuroplasticity. Get a great support team around you who know you and who are there for you through thick and thin. Keep hoping. Keep smiling. Don’t look back. What is gone is gone. Live the meaning of I can. Go for it sensibly. Watch the changes over time. Don’t give up but know that goals which were once a walk in the park can become mountains to climb. Choose realistic and achievable goals. You’ll feel better achieving lots of incremental small steps. Bitesize is the order of the day.

http://spencerdavida.com/

For those who have been following me on my fascinating journey, I hope that you will understand the significance of this piece of music to me.

Enjoy. Let it be played loudly.