Friday, 25 June 2010
Wednesday, 28 April 2010
Friday, 23 April 2010
Wednesday, 21 April 2010
Dave's Magical Brain reviewed
for the rest of this post visit http://davesmagicalbrain.wordpress.com/
Sativex to get a licence in the UK
for the rest of this post visit http://davesmagicalbrain.wordpress.com/
Tuesday, 2 March 2010
Monday, 1 February 2010
Thursday, 7 January 2010
Tuesday, 15 December 2009
Friday, 11 December 2009
One year old today!
Hello!
Dave's Magical Brain (the blog, not the brain) is one year old today!
To celebrate the occasion, I would like to announce the *new* Magical Brain (again, the blog not the brain).
I am now to be found at the following URL: http://davesmagicalbrain.wordpress.com/
The new blog has all the old posts and comments plus a few extra features.
I hope to see you there!
Dave's Magical Brain (the blog, not the brain) is one year old today!
To celebrate the occasion, I would like to announce the *new* Magical Brain (again, the blog not the brain).
I am now to be found at the following URL: http://davesmagicalbrain.wordpress.com/
The new blog has all the old posts and comments plus a few extra features.
I hope to see you there!
Thursday, 10 December 2009
"Sorry, there's nothing we can do"
There is a stand up routine by Sean Lock where he recounts being told off for swearing by belligerent airport staff. His exasperated reply finishes with "This is exactly the sort of occasion swearing was f***ing invented for!"
Excuse me a moment...
a$%e!... &u$%&!!... (%d%*!!!.... %^&*!! f&*^:~!!.... *()&*&^$%$"!!!!!!
There - out of my system...
No, wait, hang on...
%&^*£$^%$!!
There. Feel a bit better, now.
I went to see an orthoptist about my doublevision, nystagmus, intranuclear opthalmoplegia and oscillopsia the other day.
I spent about an hour undergoing various tests. I followed a torch with my eyes. I had various lenses passed in front of each of my eyes and I had to say when the image became double and single. I pointed at dots with a long stick (and missed). I looked at various patterns to find the hidden 3D shape and of course I read the all too familiar eye chart.
Things I didn't know before: I also have doublevision looking up to the right and my left eye doesn't pull in towards the nose as much as it should do.
I have been looking forward to my doublevision being sorted for the last year and a half. As I mentioned in my last post, this is the one constant symptom, the one that doesn't fade away and then come crashing back. The symptom that is constantly breathing down my shoulder reminding me I have MS and it is the symptom that spurred me on into visiting the GP in the first place.
It is also (as I screw up one eye to look at you) a symptom that makes me feel dizzy, tires me out, drags me down and makes me look like a weirdo. I was convinced that the magical people in the eye department of my local hospital would be able to build me prism lensed spectacles to straighten things out for me. Not to wear all the time, you understand, just when I'm at work, or in a meeting, or driving my car, or walking along the street. I'm not asking for much really. Just some semblance of normality.
"Sorry, there's nothing we can do..."
Apparently, they can't (or won't) correct doublevision unless it occurs in the primary position (straight ahead). Also, my eyesight is pretty good - I can read most of the bottom line on the eye chart and if I did have glasses, they would have to be plain glass and the prism lens would blur things a bit for me.
So there I was watching the orthoptist as he moved his head left and right to demonstrate how you look left and right.
Yes, I should be grateful for the fact that I can see, and yes, I should be grateful for the fact that I can see pretty well and yes, it could be a whole lot worse - a hell of a lot worse. I could have been maimed in an accident, I know. But days like this remind me that MS is a complete an utter uncurable bastard. Things will never be the same. I will never be able to look around with my eyes travelling the same speed again. I will never be able to look left and see a single image. I will never be able to look right and keep my eyes perfectly still. I will never be able to read a book without it tiring me out. Things will never be how they used to be.
So when someone tells you there is nothing they can do, that little ember of hope at the back of the hearth that you thought might be coaxed back to life with some newspaper and a bit of careful blowing, is snuffed out with a gallon of water.
And what makes it all so much worse is that I will probably look back on this day and think how lucky I was back then compared to how I am 'now'.
Doublevision is one of those symptoms that can come and go in Relapsing Remitting MS, but I'm pretty sure that after a year and a half we're not just talking about demyelination on the nerve controlling eye movement. I think there's been some permanent damage.
I have an appointment with an opthalmologist in a couple of weeks and they want to look at the back of my eyes and document the "state of things" I guess. They will probably also want to patronise me by telling me stuff I already know about nerve damage and so on.
So, having taken the knock and bottling up all the crestfallen feelings I'm back to the bustle of the hospital lobby. Past the people in Costa coffee. Skirting the guy with the mop and the couple with the walking frames. Through the automatic doors, past the A & E entrance, then the maternity wing with a handful of expectant mothers in dressing gowns, fags in hands.
Back to the car...
Negotiating the one-way system through the car parks...
Waiting for the ambulance to go past...
out onto the main road...
Whack the stereo on full blast to take my mind off things as I head back to town...
The music starts: "There's no escaping from / the man it seems that I've become..." *
... The grief.
* test your music trivia - identify the track and you may or (more likely) may not win a prize (not decided yet, but nothing big).
Excuse me a moment...
a$%e!... &u$%&!!... (%d%*!!!.... %^&*!! f&*^:~!!.... *()&*&^$%$"!!!!!!
There - out of my system...
No, wait, hang on...
%&^*£$^%$!!
There. Feel a bit better, now.
I went to see an orthoptist about my doublevision, nystagmus, intranuclear opthalmoplegia and oscillopsia the other day.
I spent about an hour undergoing various tests. I followed a torch with my eyes. I had various lenses passed in front of each of my eyes and I had to say when the image became double and single. I pointed at dots with a long stick (and missed). I looked at various patterns to find the hidden 3D shape and of course I read the all too familiar eye chart.
Things I didn't know before: I also have doublevision looking up to the right and my left eye doesn't pull in towards the nose as much as it should do.
I have been looking forward to my doublevision being sorted for the last year and a half. As I mentioned in my last post, this is the one constant symptom, the one that doesn't fade away and then come crashing back. The symptom that is constantly breathing down my shoulder reminding me I have MS and it is the symptom that spurred me on into visiting the GP in the first place.
It is also (as I screw up one eye to look at you) a symptom that makes me feel dizzy, tires me out, drags me down and makes me look like a weirdo. I was convinced that the magical people in the eye department of my local hospital would be able to build me prism lensed spectacles to straighten things out for me. Not to wear all the time, you understand, just when I'm at work, or in a meeting, or driving my car, or walking along the street. I'm not asking for much really. Just some semblance of normality.
"Sorry, there's nothing we can do..."
Apparently, they can't (or won't) correct doublevision unless it occurs in the primary position (straight ahead). Also, my eyesight is pretty good - I can read most of the bottom line on the eye chart and if I did have glasses, they would have to be plain glass and the prism lens would blur things a bit for me.
So there I was watching the orthoptist as he moved his head left and right to demonstrate how you look left and right.
Yes, I should be grateful for the fact that I can see, and yes, I should be grateful for the fact that I can see pretty well and yes, it could be a whole lot worse - a hell of a lot worse. I could have been maimed in an accident, I know. But days like this remind me that MS is a complete an utter uncurable bastard. Things will never be the same. I will never be able to look around with my eyes travelling the same speed again. I will never be able to look left and see a single image. I will never be able to look right and keep my eyes perfectly still. I will never be able to read a book without it tiring me out. Things will never be how they used to be.
So when someone tells you there is nothing they can do, that little ember of hope at the back of the hearth that you thought might be coaxed back to life with some newspaper and a bit of careful blowing, is snuffed out with a gallon of water.
And what makes it all so much worse is that I will probably look back on this day and think how lucky I was back then compared to how I am 'now'.
Doublevision is one of those symptoms that can come and go in Relapsing Remitting MS, but I'm pretty sure that after a year and a half we're not just talking about demyelination on the nerve controlling eye movement. I think there's been some permanent damage.
I have an appointment with an opthalmologist in a couple of weeks and they want to look at the back of my eyes and document the "state of things" I guess. They will probably also want to patronise me by telling me stuff I already know about nerve damage and so on.
So, having taken the knock and bottling up all the crestfallen feelings I'm back to the bustle of the hospital lobby. Past the people in Costa coffee. Skirting the guy with the mop and the couple with the walking frames. Through the automatic doors, past the A & E entrance, then the maternity wing with a handful of expectant mothers in dressing gowns, fags in hands.
Back to the car...
Negotiating the one-way system through the car parks...
Waiting for the ambulance to go past...
out onto the main road...
Whack the stereo on full blast to take my mind off things as I head back to town...
The music starts: "There's no escaping from / the man it seems that I've become..." *
... The grief.
* test your music trivia - identify the track and you may or (more likely) may not win a prize (not decided yet, but nothing big).
Monday, 7 December 2009
Doublevision
Wahay! I am off to see an orthoptist tomorrow to talk doublevision.
Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure bad luck. Doublevision has remained constant since the spring of 2008.
Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis - if I didn't have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.
Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.
People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.
I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.
When I go out for a drink (I honestly don't drink very much), I makes me feel drunk/ill way before I should do.
It doesn't normally bother me. It's constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.
There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don't fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.
A further appointment with an opthalmologist is scheduled for later this month.
Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure bad luck. Doublevision has remained constant since the spring of 2008.
Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis - if I didn't have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.
Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.
People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.
I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.
When I go out for a drink (I honestly don't drink very much), I makes me feel drunk/ill way before I should do.
It doesn't normally bother me. It's constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.
There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don't fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.
A further appointment with an opthalmologist is scheduled for later this month.
Tuesday, 1 December 2009
Unlike father unlike son
My Mum used to say that my Dad (a former cross-country runner) would often wake her up in the middle of the night by running in his sleep. His legs and feet going like the clappers. When woken and asked to explain he would mumble something about running across the fields and ditches of his native East Anglia.
I used to think that was quite sweet, and in the same way as my pet cat flying off to chase mice in the sky, I often hope that the afterlife for my Dad might include a few lengthy runs particularly as he isn't as mobile as he used to be.
I was woken up last night. Even though I have been taking my amitriptyline pills for neuropathic pain, my legs and feet decided to ignore them and they kept me awake for a long time in the early hours.
It's hard to describe how neuropathic pain feels, and it's different for different people. Sometimes they feel as if my legs are made of sponge and they are gradually being wrung out. Sometimes it feels as though they want to curl and shrivel up like a burning match. Sometimes it feels as though a large concrete slab is being placed on them imperceptably slowly by just a micron or two every minute or so.
Last night it felt like they just wanted to detach themselves and run away, running to catch up with my Dad on his ploughed field.
I used to think that was quite sweet, and in the same way as my pet cat flying off to chase mice in the sky, I often hope that the afterlife for my Dad might include a few lengthy runs particularly as he isn't as mobile as he used to be.
I was woken up last night. Even though I have been taking my amitriptyline pills for neuropathic pain, my legs and feet decided to ignore them and they kept me awake for a long time in the early hours.
It's hard to describe how neuropathic pain feels, and it's different for different people. Sometimes they feel as if my legs are made of sponge and they are gradually being wrung out. Sometimes it feels as though they want to curl and shrivel up like a burning match. Sometimes it feels as though a large concrete slab is being placed on them imperceptably slowly by just a micron or two every minute or so.
Last night it felt like they just wanted to detach themselves and run away, running to catch up with my Dad on his ploughed field.
Tuesday, 27 October 2009
Birthday hangover
It was my birthday at the weekend and now I'm hungover.
I must have had a good time... Hmmmm... Yes, I guess I did...
Saturday started by taking my eldest to her dance class and back. I started my pottery tuition in the afternoon and on Saturday evening, I ventured into Sheffield to see Reverend and the Makers play a storming hometown gig.
Sunday was my actual birthday, so I managed a little bit of a lie-in before bombardment by breakfast-in-bed wielding daughters. This was followed by a long trip to the supermarket. Then, picking up their Grandad en route, we visited one of the local parks' play areas where we had a go on the resident miniature train.
This was followed by a slap-up meal in a local eaterie, including an ice-cream dessert with a candle on top before a round-trip to show the girls Matlock illuminations.
Monday involved a day off work to do some much needed gardening, followed by helping my daughters decorate my birthday cake. By the evening, I was dropping off in my chair, so I had a brisk walk around the block to blow some life into me.
So, yes, a very enjoyable birthday... and now, even though I didn't drink a drop of alcohol, I have a hangover. A hangover caused by dragging a monster round with me all weekend. My head feels fuzzy, my hands and arms are buzzing, my legs feel like lead. I can't stop yawning after midday and I know I am going to struggle to keep awake after the girls' bed-times tonight.
I often hear people of "a certain age" claiming that "you're only as old as you feel," before twirling their umbrellas and tappity-tapping out a dance routine. If that's the case, I guess I have just reached 98, not 38.
STOP-PRESS: as I was typing this I recieved a phonecall from my local Occupational Therapist to say that I had been referred to her fatigue clinic. My first appointment is next week. The OT sounded very dour, like the last thing she wanted to do was see me, so I will keep you posted.
I must have had a good time... Hmmmm... Yes, I guess I did...
Saturday started by taking my eldest to her dance class and back. I started my pottery tuition in the afternoon and on Saturday evening, I ventured into Sheffield to see Reverend and the Makers play a storming hometown gig.
Sunday was my actual birthday, so I managed a little bit of a lie-in before bombardment by breakfast-in-bed wielding daughters. This was followed by a long trip to the supermarket. Then, picking up their Grandad en route, we visited one of the local parks' play areas where we had a go on the resident miniature train.
This was followed by a slap-up meal in a local eaterie, including an ice-cream dessert with a candle on top before a round-trip to show the girls Matlock illuminations.
Monday involved a day off work to do some much needed gardening, followed by helping my daughters decorate my birthday cake. By the evening, I was dropping off in my chair, so I had a brisk walk around the block to blow some life into me.
So, yes, a very enjoyable birthday... and now, even though I didn't drink a drop of alcohol, I have a hangover. A hangover caused by dragging a monster round with me all weekend. My head feels fuzzy, my hands and arms are buzzing, my legs feel like lead. I can't stop yawning after midday and I know I am going to struggle to keep awake after the girls' bed-times tonight.
I often hear people of "a certain age" claiming that "you're only as old as you feel," before twirling their umbrellas and tappity-tapping out a dance routine. If that's the case, I guess I have just reached 98, not 38.
STOP-PRESS: as I was typing this I recieved a phonecall from my local Occupational Therapist to say that I had been referred to her fatigue clinic. My first appointment is next week. The OT sounded very dour, like the last thing she wanted to do was see me, so I will keep you posted.
Friday, 9 October 2009
Experience of fatigue
Up to eighty-seven per cent of people with MS, including myself, experience fatigue at some point. It is important to us that people don’t think fatigue is the same as tiredness. It is the most draining experience imaginable and it can happen for no apparent reason.
I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.
I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:
“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”
“I feel like I’m in a jail cell as I’m so tired all the time…”
“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”
“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)
“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”
Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.
Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.
Further information
I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.
I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:
“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”
“I feel like I’m in a jail cell as I’m so tired all the time…”
“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”
“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)
“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”
Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.
Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.
Further information
- Fatigue factsheet (MS Trust)
- Living with fatigue (MS Trust)
- MS Essentials: Fatigue (MS Society)
Thursday, 8 October 2009
By way of introduction...
Hi
for anyone that may be discovering this blog for the first time, I was diagnosed with Relapsing Remitting MS in June 2008 and started my magical brain as a means to keep in step with things and let friends and acquaintances know how I'm getting on (cactus hands today, folks).
Anyway, if you don't know where to start, why not read my MS History?
Thanks to the MS Trust, by the way, for linking to me from their Facebook page. Reespec back atcha!
for anyone that may be discovering this blog for the first time, I was diagnosed with Relapsing Remitting MS in June 2008 and started my magical brain as a means to keep in step with things and let friends and acquaintances know how I'm getting on (cactus hands today, folks).
Anyway, if you don't know where to start, why not read my MS History?
Thanks to the MS Trust, by the way, for linking to me from their Facebook page. Reespec back atcha!
Wednesday, 7 October 2009
MS Explained
This is a little bit more involved than some of the literature out there. While not for everyone, it explains the neurology and immunology aspects of MS very well in layman's terms. I would heartily recommend this publication to the newly diagnosed. In the last year and a bit, I have read up on MS from various sources, gorging on the information within. I am pleased to report that the MS Trust publication had a lot to teach me. I know which parts of the brain have been affected causing my diplopia and nystagmus, for instance.
If it's a more general leaflet for friends and colleagues you're after I would recommend the MS Society's "What is MS?"
If you live in the UK, the MS Trust can send you a copy of MS Explained for nothing. You can also download it for free wherever you are (along with numerous other publications), just click on the link below.
Friday, 4 September 2009
As if by magic, a support network appeared
Two items of fantastic news here in North Derbyshire. Firstly, our wonderful MS nurse has teamed up with the local MS Society branch to organise a series of weekly talks/discussions/lectures titled "Getting to grips with MS" for the newly diagnosed. Topics are to include exercise, benefits, developments in treatments, coming to terms with the diagnosis, fatigue management, employment issues amongst others.
A lot of ground that these talks cover, will be stuff that isn't relevant to me, things I already know or things I think I already know. I think the main benefit for me, will be the chance to meet people in a similar situation, share experiences and feel a little less isolated.
In another new development, my local branch of the MS Society is organising a series of monthly drop-in sessions at a local surgery for people with MS or their partners/carers to have any queries answered, access MS Society literature or simply to network with others over a cuppa.
I don't normally interact with my local MS Society as the people who attend the social evenings tend (this might be a little unfair) to be in an older age bracket. This is an issue that the MS Society has recognised nationally, judging by the voting slips that were sent round recently. I guess the EMYAMS facebook group is one outlet seeking to redress this.
It would be interesting to see if other areas have similar schemes for reaching out to people, or if there are any innovative ideas out there.
A lot of ground that these talks cover, will be stuff that isn't relevant to me, things I already know or things I think I already know. I think the main benefit for me, will be the chance to meet people in a similar situation, share experiences and feel a little less isolated.
In another new development, my local branch of the MS Society is organising a series of monthly drop-in sessions at a local surgery for people with MS or their partners/carers to have any queries answered, access MS Society literature or simply to network with others over a cuppa.
I don't normally interact with my local MS Society as the people who attend the social evenings tend (this might be a little unfair) to be in an older age bracket. This is an issue that the MS Society has recognised nationally, judging by the voting slips that were sent round recently. I guess the EMYAMS facebook group is one outlet seeking to redress this.
It would be interesting to see if other areas have similar schemes for reaching out to people, or if there are any innovative ideas out there.
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