31st August 2022. 507 days after the first seizure event.
Good afternoon.
Let me begin with some numbers.
628 total seizures over 507 days and a current probability rate (PR) which has reduced from 6.88 per day on day one to now be between 0.03 and 0.09 per day.
This PR is the ‘likelyhood’ of me having a seizure or sequence of seizures in any one given day.
Brief update this month. For those who know me, there is a significant event happening on 17th September, my daughter Emma’s wedding, and that takes precedence. I have a very if not the most, important speech of my life to deliver.😁🙂
‘As some will know, last week I was ‘declared medically unfit’ to drive for a further twelve months due to my seizure activity but this does not explain the wider picture which is one of my good and evidence-based progress.
I am content with my overall progress having been able to reduce the probability of me having a seizure or sequence of seizures from c. 6.88 per day to now be in the range of 0.03 to 0.09 per day.
To put this into context, I am actually unaware of how many have had such a similar outcome. Given the overall incidence rate is between 4-12 per 100,000 there are very few, if any at all, longitudinal studies as to outcome.
Given this lack of longitudinal data, I have as part of my science project (on myself) performed my own. This has been shared with some already. It is a dataset of some seventeen months.
Many people who experience seizure activity will naturally ask the question, what is the ‘prognosis’.
Whilst there is no one definitive answer, and in reality, everyone’s journey will be unique, examples of real life are often useful for others as a reference point, and this has been shared on that basis.
What underpins all of this, is the practical innate ability of us all to use the power of neuroplasticity and in particular my use of neural entrainment over many painstaking months.
I have made it very clear to all that this is not ‘a cure’ rather an enhancement of and to, the neural network we all possess which has allowed me to bring that which is involuntary under my voluntary control.‘
I have updated the Seizure Analysis page with the more data but for me these are the key metrics I am using now. This includes a specific example of how REM Sleep can be shown to be a prodrome for my types of absence seizures.
You can see the full data on the Seizure Analysis page. This has data up to and including 31st August 2022.
Thank you for reading my story. I find my functional seizures fascinating and for me they continue to be a great science project for me to get my teeth into. As ever I remain very positive.
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.