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Rebooting the Brain

Turn it off. Then turn it back on again.

Hello Everybody. I hope you’re not busy because I’ve got a lot to say. So get a nice cup of tea, sit comfortably and I’ll begin.

I joined the forum recently and posted a few thoughts about Multiple Sclerosis and its effect on my life and that of my lovely, caring, patient, towering, exceptional, extraordinary, magnificent, outstanding, pre-eminent, rare, remarkable, singular, unique, best friend, lover, carer, and all round heroine; and she’s my wife! And she’s only 5’2".

Which just goes to show that you don’t have to be big to achieve extraordinary things or that a small event can’t have a huge impact. Think of the Butterfly Effect. If you don’t know it, look it up - I haven’t the time to do everything for you. My brain completes about 70,000,000 calculations a second. (I think I read that somewhere. If it’s not true it should be).

Anyway, so the human brain is an extraordinary organ. So when I was diagnosed with PPMS in 2010 I thought, “Hello? I’m not having that ‘thing’ occupying my body”.

Flashback (to 2008)

… It started with optic neuritis (which I found bizarre, but interesting), followed by foot drop which was irritating. I tripped up on a step in our B&B, broke my fall with my nose, bent my glasses, two Full English Breakfasts for guests went flying and Gill had to fry more eggs! …

End of flashback.

Anywho. More of that later.

Last year, as my symptoms began to pile up, one by one, I asked my MS Nurse (who, incidentally, is in the same class a Gill, but I’m not allowed to marry her) if she could recommend a lumbar support, as I was having difficulty standing at the kitchen worktop to butter some bread or make a cup of tea.

MS Nurse (who shall remain anonymous to protect the innocent) told me, “Exercise, Anthony. If you put a support on you’ll come to rely on it instead of your own muscles. Do you have the exercises that Physio gave you last year?”

“I lost ‘em”

“I’ll email them to you. And do it properly this time.” (Lovely woman, but don’t get on the wrong side of her).

I did the whole regime for two months. I designed a calendar (because I used to be a designer) so I could show her that I’d done it. (See Fig 1.*) It didn’t make one iota of difference.

After that, I lost interest, but I thought,

“Hang on. Doing this is rather mindless; I wonder if I should be trying to connect my brain with my body. If my body is like a computer, then my brain is the CPU”,

(I’ll help you out with this one, as it’s you; it’s the Central Processing Unit),

“and the limbs, fingers, eyes, tongue, ears and everything else** are like the peripherals; then I should check all the plugs to make sure that they’re properly connected”.

“How (the hell; (edit. stet.)) do I do that when all the plugs are invisible?”

And I don’t know where the idea came from but I thought I’d try Tai Chi.

Now; go to Neil Webster’s Facebook site. Not now. Wait 'til I’ve finished; (tisk). He took some videos of me shortly after I’d joined his kwoon*** and a couple of times later on, to show how I’d come along. He admitted later on (last week, actually) that when I first arrived that he had no idea how it was going to work. He was astonished, (as are several other people; except my wife (see above)) - for some reason) at the results.

We both know that this is only the start of a journey. It’s going to be a long one and I’m going to have to work very hard. But, as some bloke once said to me, “If it’s easy, it’s not worth doing” (It took me a while for that to sink in, but he’s right).

So, if your interested, join me on a journey. I don’t know where it will take us, or how long it’s going to take, but I think it’s going to be very, very interesting. And a damn site better that daytime TV.

Ready? Good. Right answer.

I am.

Dedication:

Thank you to: Snow Leopard, JackieVanilla, Ben, Hillbilly, Ninagrace7, Min, trish444 and Anne48 who seemed interested with what I had to say in the first place. So if anyone’s got a complaint, you know who to blame. I know I do. Their nom-de-plumes are playing merry hell with my spellcheck. See you around guys.

*There is no Fig 1. I spent hours writing this. What do you want? Blood?

**The five senses.

*** A Chinese gym or area for martial arts and exercise. No I’d never heard of it either.

2 Likes

Interesting read Anthony (see, I took in what I read). I also try to do as much as I can to remain independent, trying to use my muscles rather than aids with varying success. Gill is obviously a treasure, I hope she read your post to see how you feel about her (or tell her often), you’re a very lucky man to have her. I only have an 18 year old daughter who at times is lovely, helpful, caring and I love her to bits, but at times she turns into a typically hormonal teen who goes mad every time I do silly things like overdoing it or falling over as I don’t use my stick in the house or have my mobile phone on my person 24/7.

I’m very lucky to have a lovely supportive family and friends and they keep my spirits up and I couldn’t manage without. I might look up the Tai Chi but I live very rurally so I’m not sure if we have it around here.

Take care

Cath x

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Hi Albrecht, very interesting.

I did try Tai Chi a few years ago but found it very tiring. I think most of the problem was having to travel there by tube (I could still walk ok then so could still use the tube) and also exhausting being in a room full of people.

But it is very good. I’ll take a look at your Facebook page.

Thanks for the info,

Pat xx (very glad you have such a supportive wife. Really we should have an award for great partners and spouses, there are several on here!)

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Hi Min,

Yes, I showed her the text before I pressed send. Her lovely face beamed. And I tell her several times a day that I love her. It’s always a “The Waltons” moment when every evening when the light goes out. And we fall asleep in each others arms. It’s always a struggle to get up in the morning as she grabs my arm, half asleep and I have struggle with her weight as well as my own misbehaving muscles.

Too much information?

No. Gill never blows her own trumpet so I have to. Sometimes I think she doesn’t believe how unbelievably precious she is to me.

An award? She’s got me! What more could a woman want? I never go to the pub. I never stay out late with the lads. I never get drunk, well almost never; we’ll just gloss over what happened on Boxing Day. I… I… I just love her to bits.

A.

2 Likes

I enjoyed reading this! You remind me of Terry Pratchett. I SO empathise with how long it took you to write that long post though, oh yes indeed. It’s the old things-taking-5-times-as-long-for-people-with-MS thing, isn’t it. I’m not sure I’d have managed it at all, my brain gives up and clears off if I demand too much prolonged effort from it, and a lot of days it seems to judge “prolonged effort” as, “more than 5 minutes”. Hey ho!

You’ve got me wondering anew about a stick, and whether to use one. I can go for about 20 minutes max, at my slow plodding pace, before I’m fervently wishing that I was sat down at home. I really don’t know the best option because I’ve worried that using a stick would make me reliant on it and it would be better to stick to my own 2 legs for support, but then again, if I had more confidence because of using a support maybe I’d actually set foot outside more than once a month or so! I like the idea of a collapsible one in my bag in case I need it. Though I’m fully aware that once I start to struggle, whipping out a stick at that point isn’t going to stop me from struggling, but it would hopefully enable me to get home without falling under a bus.

So yeah, dilemma for me!

Hi Jell,

You got the humour then? Good. Although I’m more of a Hitchhiker’s Guide man. I heard the first broadcast in 1977 or 1978. I was painting the stairs to my flat blue at the time and I literally didn’t believe my ears. As it turned out it’s bloody good practise for dealing with MS. Douglas Adams would have made a terrific neurologist.

As for things-taking-5-times-as-long-for-people-with-MS thing, Bollox. I’m just a terrible typist.

Seriously though, I do have the neuropathic disfunction in that my fingers have pins and needles at the same thyme as feeling numb (cervical/thoracic vertebrae of the spinal cord). Amitriptyline and co-codamol take the pain away but I’d rather be able to play my piano. Read Steve Snore’s contribution; he used to teach music.

As for the stick. Take it with you but don’t use it. Genius!

I gotta form a fan club.

A.

Weelll…when I told a friend of mine about the MS, and he asked if I’d be getting a stick, the main thing he wanted to know was if I was going to whap people with it as he fully expected this. No idea why people get these ideas about me.

Yeah, having a stick on hand as a kind of security blanket’s probably the best move, isn’t it. I can make myself feel all badass by telling myself that I’m carrying a concealed weapon.

I never appreciated Hitchhiker’s Guide, I was 9 when that was on and it went right over my head. Which was probably for the best! Basically all I remember is Slartibartfast, because it was such a silly name, lol.

Jelly,

Don’t knock the stick schtick. It’s very useful and not just for walking. The crook type can be used for pulling things closer to you. Prodding things without having to bend down and closing windows.

But my favourite moment is, when out doors and you see a teenager walking towards you, lost in their own little bubble because they’re texting. You stand still, wait for the collision (because they are soooo selfish they think that every one else will make way for them), brace yourself and because they aren’t expecting it, come off worse. Boy - do they look stupid.

Anyone who can even remember how to spell Slartibartfast is obviously capable of doing several impossible things before breakfast. You certainly know where your towel is. And that’s cool.

Keep up the good work, lad.

I’ll be checking.

A.

LOL! Don’t be fooled, I had to consult friend Google on how to spell it. I didn’t actually know, so for once that mildly patronising, “did you mean…” question of Google’s was actually correct!

I am renowned for prodding things with sticks, if I do say so myself. My friend who asked me if I’d be getting one draws pics of me hitting him with various things (that’s perfectly normal, right?) this being my favourite example.

photo yanimated-1_zps35e022cc.gif

It’s been a few years since I had a pokey stick, that in itself is a good reason to invest in one of the walking kind, isn’t it. I’d not considered the teenager control aspect, you’re making it sound a more attractive option every moment!

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Hi Jel,

Love the cartoon.

How do you do it?

Terrific.

This is the future of communications!

Better than a Pan-Galactic Gargle Blaster!

Must go offline now as Gill is getting lonely. Ah. The loneliness of Command, the Burden of Responsibility. Time for my meds in any case.

Good show Jel.

Thanks

A.

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Jelly the stick is one of my best investments (very inexpensive on eBay). They’re really good for balance, a life saver when getting home looks impossible, yes I’ve done the “brace myself before this person walks into me” thing, but it’s great too as a tool for getting things off high shelves in the supermarket, closing windows and all sorts of things.

Maintaining my dignity rather than falling over or leaning on when I’m shattered or dizzy though are the best reasons for owning and using my stick. I don’t need it around the house and after at least three years with old faithful at my side, my mobility hasn’t gotten worse, I’ve just had more confidence to get out. People are usually more considerate and they to give me more room, bumping into me less or helping with stiff doors.

Don’t let the image issues stop you from getting one, I’m only young(ish) so it wasn’t easy for me either, but they do help.

Cath x

Hi Jellybaby

So, you get asked if you’d be getting a stick. I keep getting the reaction of “You can smoke cannabis then”. And a little glint appears in one eye. Anyone would think I was a dealer the way they behave. Only smoked it once, about 45 years ago. It made me feel nauseous and my face turned green. I wouldn’t say no to Sativex given a chance though. Sounds like a fun way to have an incurable disease.

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Hey, look what I found!

ahahahahahahahahahaahahahhahahahahahahahahahahahahahahahahaahahahahahaaaaaaaaaaaaaaaaaaaaaarrrggh.

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Seriously, though folks.

Here’s something that works for me.

https://www.facebook.com/neil.webster.771

A.