July 8, 21. 88 days after what is called ‘the insidious little bastard’ appeared.
Good afternoon.
Apologies for the use of ‘inclement’ language above. This is actually the name I gave to my new friend, shortly after its second appearance on 22 April. It described how I felt after one of my first seizure sequences. I needed to objectify it.
Note it is gender neutral. I am afraid it has no special affinity for being called a male or a female or anywhere in between. Interestingly, the literature suggests that the ratio of people diagnosed is roughly split 25% male and 75% female. I only report this, and make no assertion as to this being the case.
What is though, a familiar theme within the literature, is that anyone and everyone can be affected. This is as you would expect, as the one common characteristic of all of the people who are affected by this condition is very simple. They all have a brain.
That is all that is required. This is a neurological condition, that is to say it is in its very nature a fundamental condition relating to the working of the entire nervous system and interconnected anatomy and thus can affect any part of our body.
The higher the density of nerve connections the higher probability of manifestation in that part of the body. This is the first of my technical comments to which I will refer to in a later article.
Before I start this months update, I must publicly thank those around me who have been so incredibly supportive of me in many different ways. Each and every one of these positive actions has meant a great deal to me. The most important people I must thank, and to whom I can never say it enough to, are my immediate family. My amazing wife, daughter and son who have all played a crucial part in helping me get to where I am today and I am eternally in their debt.
I do not believe that seeing someone have a seizure is fun. Quite the opposite. It is distressing. For me, one of the worst parts of all of this, is the effect it has upon others. I openly hate this aspect. By all means affect me, but I see no fairness in the way it affects the carers.
I must also mention my colleagues where I work who have been both supportive and caring toward me. Then there is the extended team of medics who continue to provide to me their experience. Finally to everyone else who are unnamed, but who are there, and who I thank. It is a journey.
This month, I have concentrated on some key steps. Follow the hyperlinks below.
- learn through every day and learn to unlearn. Neuro plasticity is the key to managing NEAD;
- recording of data;
- becoming more able to ‘sense’ the warning signs that are commonly called precursor events and the different types of sensory aura I experience; and
- understanding more about how to manage the types of seizures I experience and then practicing how to distract them.
I will update each section over the next few days. One thing you do have to unlearn, is that time is not yours anymore with NEAD. It has a habit of eating up time. You do lose so much usable time. I have already filled one notebook cover to cover so bear with me whilst I distil this into readable chunks.