tag:blogger.com,1999:blog-12887977550173543022024-03-05T04:53:24.640+00:00Dave's magical brain (or "me and my myelin")My Multiple Sclerosis blog - living with it, learning about it, it's progress, disease modifying therapies etc.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.comBlogger73125tag:blogger.com,1999:blog-1288797755017354302.post-41360479072323739472010-06-25T13:27:00.001+01:002010-06-25T13:28:06.311+01:00Mild relapse?<a href="http://bit.ly/bQgiAg">http://bit.ly/bQgiAg</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com1tag:blogger.com,1999:blog-1288797755017354302.post-45836295949883754932010-04-28T14:14:00.003+01:002010-04-28T14:14:46.130+01:00Compare and contrastto know more, I am now blogging at <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com1tag:blogger.com,1999:blog-1288797755017354302.post-43687706064453295542010-04-23T16:17:00.000+01:002010-04-23T16:17:03.883+01:00Dave's magical teethto know more, I am now blogging at <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-14152460243823999892010-04-21T14:05:00.003+01:002010-04-21T14:50:34.690+01:00Dave's Magical Brain reviewedfor the rest of this post visit <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-60339076014041866662010-04-21T14:04:00.007+01:002010-04-21T14:50:53.607+01:00Sativex to get a licence in the UKfor the rest of this post visit <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-4528311042577963802010-04-21T14:04:00.006+01:002010-04-21T14:50:45.706+01:00Eye and blood appointmentsfor the rest of this post visit <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-61157775304264966702010-04-21T14:03:00.003+01:002010-04-21T14:51:01.990+01:00RIP John Hicklentonfor the rest of this post visit <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-45027848258586317942010-03-02T15:58:00.002+00:002010-03-02T15:58:59.615+00:00Life with MS - analogiesNew blogpost at <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-48292365720970150572010-02-01T15:26:00.002+00:002010-02-01T15:26:22.177+00:00Getting fit with Mr Uhthoff - blog post on new Magical Brain <a href="http://bit.ly/9cGjtf">http://bit.ly/9cGjtf</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-79681139774784732812010-01-07T13:35:00.000+00:002010-01-07T13:35:36.860+00:00Giving inNew blog post on Dave's Magical Brain: <a href="http://bit.ly/63wNfc">http://bit.ly/63wNfc</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com1tag:blogger.com,1999:blog-1288797755017354302.post-25645755992766202772009-12-15T10:13:00.000+00:002009-12-15T10:13:09.003+00:00Magical Brain has movedThis blog has a shiny new home at <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a> <br />
<br />
Hope to see you there!Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-28962131701748597412009-12-11T09:29:00.002+00:002009-12-11T09:29:48.064+00:00One year old today!Hello! <br />
<br />
Dave's Magical Brain (the blog, not the brain) is one year old today!<br />
<br />
To celebrate the occasion, I would like to announce the *new* Magical Brain (again, the blog not the brain). <br />
<br />
I am now to be found at the following URL: <a href="http://davesmagicalbrain.wordpress.com/">http://davesmagicalbrain.wordpress.com/</a><br />
<br />
The new blog has all the old posts and comments plus a few extra features.<br />
<br />
I hope to see you there!Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-8585531908241492972009-12-10T12:46:00.002+00:002009-12-10T13:43:54.860+00:00"Sorry, there's nothing we can do"There is a <a href="http://www.youtube.com/watch?v=ixaY6VU39Us">stand up routine by Sean Lock</a> 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!" <br />
<br />
Excuse me a moment...<br />
<br />
a$%e!... &u$%&!!... (%d%*!!!.... %^&*!! f&*^:~!!.... *()&*&^$%$"!!!!!!<br />
<br />
There - out of my system...<br />
<br />
No, wait, hang on...<br />
<br />
%&^*£$^%$!!<br />
<br />
There. Feel a bit better, now.<br />
<br />
I went to see an orthoptist about my doublevision, nystagmus, intranuclear opthalmoplegia and oscillopsia the other day. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
"Sorry, there's nothing we can do..."<br />
<br />
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.<br />
<br />
So there I was watching the orthoptist as he moved his head left and right to demonstrate how you look left and right.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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'.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Back to the car...<br />
<br />
Negotiating the one-way system through the car parks...<br />
<br />
Waiting for the ambulance to go past...<br />
<br />
out onto the main road...<br />
<br />
Whack the stereo on full blast to take my mind off things as I head back to town...<br />
<br />
The music starts: "There's no escaping from / the man it seems that I've become..." *<br />
<br />
... The grief.<br />
<br />
* test your music trivia - identify the track and you may or (more likely) may not win a prize (not decided yet, but nothing big).Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-50877516657649290282009-12-07T16:21:00.001+00:002009-12-07T16:21:23.069+00:00DoublevisionWahay! I am off to see an orthoptist tomorrow to talk doublevision.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that. <br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
A further appointment with an opthalmologist is scheduled for later this month.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com3tag:blogger.com,1999:blog-1288797755017354302.post-2844983245220195242009-12-01T15:49:00.000+00:002009-12-01T15:49:52.456+00:00Unlike father unlike sonMy 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-84906882914001990812009-10-27T16:05:00.000+00:002009-10-27T16:05:53.327+00:00Birthday hangoverIt was my birthday at the weekend and now I'm hungover.<br />
<br />
I must have had a good time... Hmmmm... Yes, I guess I did...<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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.<br />
<br />
<br />
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.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-53647115848484856322009-10-09T13:35:00.004+01:002009-10-09T13:40:02.948+01:00Experience of fatigueUp 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.<br />
<br />
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. <br />
<br />
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:<br />
<br />
“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…”<br />
<br />
“I feel like I’m in a jail cell as I’m so tired all the time…”<br />
<br />
“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”<br />
<br />
“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!)<br />
<br />
“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.”<br />
<br />
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.<br />
<br />
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.<br />
<br />
Further information<br />
<br />
<ul><li><a href="http://www.mstrust.org.uk/shop/product.jsp?prodid=93">Fatigue factsheet</a> (MS Trust) </li>
<li><a href="http://www.mstrust.org.uk/shop/product.jsp?prodid=204">Living with fatigue</a> (MS Trust) </li>
<li><a href="http://www.mssociety.org.uk/support_and_services/free_publications/ms_essentials_14.html">MS Essentials: Fatigue</a> (MS Society) </li>
</ul>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com2tag:blogger.com,1999:blog-1288797755017354302.post-91721897034573483212009-10-08T13:16:00.002+01:002009-10-08T13:28:10.179+01:00By way of introduction...Hi<br />
<br />
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).<br />
<br />
Anyway, if you don't know where to start, why not read my MS History?<br />
<ul><li><a href="http://davesmagicalbrain.blogspot.com/2008/12/my-ms-history-part-one.html">Part One</a> </li>
<li><a href="http://davesmagicalbrain.blogspot.com/2009/01/my-ms-history-part-two.html">Part Two</a> </li>
<li><a href="http://davesmagicalbrain.blogspot.com/2009/01/my-ms-history-part-three.html">Part Three</a> </li>
<li><a href="http://davesmagicalbrain.blogspot.com/2009/01/my-ms-history-part-four.html">Part Four</a> </li>
<li><a href="http://davesmagicalbrain.blogspot.com/2009/02/my-ms-history-part-five.html">Part Five</a></li>
<li><a href="http://davesmagicalbrain.blogspot.com/2009/03/my-ms-history-part-six.html">Part Six</a></li>
<li><a href="http://davesmagicalbrain.blogspot.com/2009/06/yearly-neurologist-meeting-2009.html">2009 update</a></li>
</ul>Thanks to the MS Trust, by the way, for linking to me from their Facebook page. Reespec back atcha!Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-37463307680787906042009-10-07T15:32:00.001+01:002009-10-07T15:33:39.927+01:00MS Explained<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhauj9iG392EqwZ_VMnn9kLq0_HNvBIoCAUlMOlW7WxAHeUNjWrXaiDz96b94osxWDLwrA4mmfYhKtpSe5ZQcsyICpq6rN2pjvzZjUOR_NX38YdaAOkflIrmPpwKcKlurXFeRlV3ZRL-HRg/s1600-h/msexplained.gif" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img $r="true" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhauj9iG392EqwZ_VMnn9kLq0_HNvBIoCAUlMOlW7WxAHeUNjWrXaiDz96b94osxWDLwrA4mmfYhKtpSe5ZQcsyICpq6rN2pjvzZjUOR_NX38YdaAOkflIrmPpwKcKlurXFeRlV3ZRL-HRg/s200/msexplained.gif" /></a><br />
</div>Just a note to say that the MS Trust (UK) have updated their marvellous booklet <a href="http://www.mstrust.org.uk/shop/product.jsp?prodid=84">MS Explained</a>.<br />
<br />
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.<br />
<br />
If it's a more general leaflet for friends and colleagues you're after I would recommend the MS Society's "<a href="http://www.mssociety.org.uk/support_and_services/free_publications/what_is_ms.html">What is MS?</a>" <br />
<br />
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.<br />
<ul><li><a href="http://www.mstrust.org.uk/shop/product.jsp?prodid=84">MS Explained</a></li>
</ul>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-85673518459046825872009-09-04T12:49:00.001+01:002009-09-04T12:53:15.320+01:00As if by magic, a support network appearedTwo 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.<br /><br />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.<br /><br />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.<br /><br />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 <a href="http://www.facebook.com/group.php?gid=73547544477">EMYAMS facebook group </a>is one outlet seeking to redress this.<br /><br />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.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com2tag:blogger.com,1999:blog-1288797755017354302.post-74043741776700745332009-08-14T12:34:00.001+01:002009-08-14T12:37:17.077+01:00ffffffaaaaaaaatiiiiiiiiiiiiguuuuuuueeeeeeeee...... er.. [ctrl-alt-del] Damn!.. Didn't work.I have been reading a recent issue of ms matters (quarterly MS Society magazine). It had invited readers as part of MS Week, what they thought was the most common misconceptions around the disease - usual stuff - wheelchairs; appearing to look well etc.<br /><br />One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.<br /><br />The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn't look like it is ever going to be anything other than that indefinitely.<br /><br />Having MS fatigue is just like that - a sudden brain-crash. Nothing works. I have been jolted 'awake' from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all - a completely empty thought process. I just didn't seem to have the energy to think. While that's quite a scary thing to realise, it's even scarier to feel your mind sliding back into that position again only seconds later. It's like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.<br /><br />Of course, that's the mental side of it. Physically, it's like being in a four-legged race with both legs strapped to sumo wrestlers.<br /><br />Right - now I'm off on my holidays. Going to do battle with hot weather.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com1tag:blogger.com,1999:blog-1288797755017354302.post-20594433468101505362009-08-14T12:33:00.001+01:002009-08-14T12:34:27.787+01:00wheelchairs not sexy - shockerCommon complaint from people with disability is that adaptive devices - wheelchairs etc - aren't sexy. They are commonly black, grey, beige and depress the hell out of their users. Interesting letter to ms matters recently posed the question "What if James Dyson had a close relative who was disabled?"<br /><br />Cool - imagine that - a wheelchair designed by Dyson!... visions of a large yellow ball swerving round corners.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-12989499735776838892009-08-04T14:42:00.003+01:002009-08-04T14:47:30.794+01:00Health talk onlineEven with all the support in the world, diagnosis of a chronic illness can be a dreadfully lonely experience. While the <a href="http://www.mssociety.org.uk/">MS Society</a> and the <a href="http://www.mstrust.org.uk/">MS Trust</a> and the nurse assigned to me were all utterly wonderful when I was diagnosed, I think what I needed (need) more than anything was to connect with other people who have MS and share experience.<br /><br />Ultimately, health professionals specialising in MS can give you the lowdown on the disease and tell you everything you need to know and more, but it is extremely unlikely they have the disease themselves. It is like a NASA engineer telling an astronaut what it will be like flying in space.<br /><br />So it is only natural to turn to the web for advice. But it's also widely acknowledged that the web can be a wildly misleading and biased source of information (I did Health Informatics as part of my Masters degree, so trust me).<br /><br />For the most part, I have connected with others so far, through <a href="http://www.youtube.com/">YouTube</a>, various <a href="http://www.facebook.com/">Facebook </a>discussion boards and blogs such as this one.<br /><br />When I heard about <a href="http://www.healthtalkonline.org/">www.healthtalkonline.org</a> on the BBC1 Breakfast show this morning my ears pricked up. This is a new resource primarily for people diagnosed with chronic illness.<br /><br />The idea behind it is that you can access interviews from other people with the same condition as you or your loved one and hear their experiences of diagnosis and living with the conditions. The patients interviewed are a representative sample from across the UK and the site is managed by experts from Oxford University.<br /><br />"Sounds interesting," I thought "must remember to check it out later."<br /><br />The BBC feature has obviously increased traffic to the site crashing it's servers as it was unavailable for much of this morning, but I have just accessed the site and I can report that there is NO information on MS. Clicking on "nerves and brain" brings up dementia, epilepsy, motor neurone disease, parkinson's disease and stroke, yet there is no information on the UK's most common neurological condition. Even clicking on "living with disability" only brings up<br />information on autism.<br /><br />The only relevant info is on chronic pain where apparently one of the interviewees has MS.<br /><br />I know, I know... early days... give it time...<br /><br />...but it's very disappointing.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com1tag:blogger.com,1999:blog-1288797755017354302.post-64446869915392320402009-08-04T14:38:00.002+01:002009-08-04T14:41:59.807+01:00MS Trust open dooropen door is the quarterly newsletter from the MS Trust. It largely reports on research results and the like, but despite this, is very readable. The current issue (just arrived) deals with posture, depression, misleading stem cell treatments and the impact of progressive MS on family life amongst other things.<br /><br />Items that caught my eye:<br /><br />Prevalence of MS in the UK may be as great as 100,000 people, not 85,000 as previously thought. The figure was arrived at after studying codes indicating an<br /><br />MS diagnosis from GP records. Considering the fact that I consulted my GPs with vertigo and optic neuritis symptoms in the four years leading up to diagnosis, without mention of MS, this rings true.<br /><br />Oral treatments for relapsing/remitting MS take a step closer with the National Institute for Clinical Excellence (NICE) announcing that fingolimod and cladribine will be included in their next round of appraisals. Both of these drugs have shown positive results in trials so far, but some safety issues need further research. I don't think I need to say that I would welcome disease modifying therapy in tablet form, do I? The thrice weekly ritual of warming up syringes and choosing injection sites is a real bind. I don't know what side-effects are associated with these drugs.<br /><br />MS patients sweat markedly less than people without MS. I would guess that this isn't the case with all people with MS, just as not everyone has the same line-up of symptoms. Heat aggravates MS symptoms, so I also guess that a sweating impairment could begin a vicious circle of overheating.<br /><br />If you are living in the UK, you can sign up to receive open door on the MS Trust website: <a href="http://www.mstrust.org.uk/">www.mstrust.org.uk</a>Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0tag:blogger.com,1999:blog-1288797755017354302.post-4639480175269069482009-08-03T14:59:00.004+01:002009-08-03T15:01:06.855+01:00painCurrently experiencing a lot of neuropathic pain in my feet and legs. It can't be due to forgetting the tablets too often as I have remembered to take them the last few days.<br /><br />I am going to continue to take them at the current level for this week and if no better, I'm upping the dose.<br /><br />Walking about relieves it a little, but the pain always seems to catch up.Dave Serjeanthttp://www.blogger.com/profile/06479441346697423799noreply@blogger.com0