Filum Disease – Tag Heuer = Help The Fear!!

‘You can’t always control what life throws at you. You can however control how you react to it.’

OK so I’m not one to do the simple things in life! I thought I ‘only’ had Chiari Malformation and Syringomyelia, oh and a Spina Bifida (forgot about that!) but following some recent research, as I’m 14 weeks into another nasty flair up, I decided to go and get some private MRI scans done. Long story short, it has shown, via a Spanish clinic, that I also have Neuro-cranio-vertebral Syndrome otherwise known as Filum Disease. They are related, so it isn’t a major stretch and it isn’t like this is new, just a new chance to maybe put some things ‘right’.

I won’t go into massive details on any of the conditions, links are easy to follow at the bottom of the article if you wish.

I’d posted on my Facebook the initial chance of an operation being available: 1st Facebook Post And then updated 2nd Facebook Post and many of you kind folks asked me to set up a JustGiving page or a Crowdfunder so you could contribute. I thank you from the bottom of my heart but it really doesn’t sit so well with me, I like to raise money for charity (see info at the bottom of the article), not ask for charity but I do also understand what some of you are very kindly saying, that it isn’t me there with a begging bowl, people want to help. I am also aware I can make it very difficult for people to help, it is just the way I am!! SO… I came up with a bit of a middle ground, so I feel a bit more comfortable, I’m going to raffle my Vintage (that means used folks!) Tag Heuer Aquaracer watch.

Seems a nice way for me to do some fundraising, and for those that want to help, to help, and keeps my conscience, pride or whatever the heck it is, clear.

Raffle now closed, details removed. Villa legend Dennis Mortimer won, and gave me the watch straight back!

Or another way to help is to buy my book: Fear Conquers All – Amazon.co.uk which has 25 5* reviews and is basically a piece of literary genius. Ahem! fear-conquers-all-book-launched

I’m basically a bit bored of falling over, legs giving way, memory fading, the brain fogs and confusion, the tiredness and so on and so forth. Many of you have seen me in a more than viable condition, but that doesn’t show the pain, tiredness, dizziness, confusion I have, all the time, every second of every day, and then many of you have also seen me sober as a judge (stupid expression!) but falling over, slurring words, shaking and so on. I don’t much like the blah blah blah poor me stuff as you know, but it is a trial, I’ve faced it head-on, but the stop-start of life, doing something then spending weeks sitting down because there is nothing else I can do does grate even the most positive of people and I’d like to count myself as one of those.

The worst that can happen? It might not work, or obviously, you can get operation complications. This though isn’t like the decompression op I had, it is fairly low invasive. The middle ground, it might stop this thing getting worse. The best case is I get relief from at least some of the odd neurological things that happen and I can get back into my gym and hopefully complete the 3rd peak so I’ve done all 3 Ben Nevis, Snowdon and then Scafell Pike!

Thank you for your time in reading the latest bit of my life journey! lol

Links:

Filum Disease and more on the condition. Interesting, positive look at the success rates of this procedure: https://institutchiaribcn.com/en/success-rates-icseb/

Chiari, which is my main problem and the reason I had the brain chop in 1994, which although the quality of my life suffered (it is an extreme and dangerous procedure) it did save my life: webmd.com/brain/chiari-malformation Syringomyelia: webmd.com/brain/what-is-syringomyelia

Some nice positive things about moi:

The Barmiest Thing I’ve Ever Done & One Of The Best Things I’ve Ever Done.

The Most Important Decade Of My Life – I Was Given A Shot – I Took It.

Dan Rolinson Caught Up With Fear, The AVFC Fan With An Incredible – & Inspirational – Back Story

menshealth.com/mens-health-heroes-jonathan-fear/

birminghammail.co/special-feature-meet-superhero-aston

Charity……… you have probably figured, I’m trying to justify in my own noggin, why I’m doing this!

£5000 for Cystic Fibrosis climbing Ben Nevis: https://www.justgiving.com/fundraising/fearbennevis

£5563 for Acorns https://www.justgiving.com/fundraising/vitalvilla

£1600 for the Aston Villa Foundation (doing the marathon)

And a very proud role here, even if the country didn’t agree with the honour nominations!