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Posts Tagged ‘neurological’

Was just commenting on a post in the Vasculitis UK Facebook group today, and reminded of the devastating daily nausea I had for years from Azathioprine. I started taking this drug in 1998 to control my life threatening neurological auto immune disease cerebral vasculitis. Basically the drug controlled the inflammation in the blood vessels in my brain, and kept me alive. Azathioprine is a very old chemotherapy drug, though not just used for cancer, but also auto immune diseases like mine. It’s quite mild, but it can cause the horrible side effects. I would feel sick within 90 minutes of taking the pills, and it lasted for up to 8 hours a day. Every day, for most of a decade. That’s what I lived with from 1998 onwards. Every single day. For some people the sickness goes away. Not me. I stuck with it because I suspected – rightly as it turned out – that all the cytotoxic drugs (including the main alternative drugs I could be switched to, and ended up trying later anyway) would make me hurl. Eventually, after another drug had been added to the mix in 2006, and I said I just can’t cope with this sickness from both, the medics put me on twice daily anti nausea drugs for life. That transformed my life. I wish I’d been on them sooner. Years later I had high dose chemotherapy infusions in hospital, which made me even sicker. But they only lasted a few months. Azathioprine went on for years. So yup, chemo and auto immune disease can be a stinker. And not just the obvious high dose infusions.

P.S. A point that I should add is that auto immune chemo patients don’t get the same support that cancer chemo patients do. We’re not given the same anti nausea drugs. Also no similar arrangements re free hospital parking for infusion days. But it can be just as tough. And a treatment that can go on for vastly longer.

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As we near the end of 2017 I thought I’d reflect on the books I’ve been reading over the last year. Note this is the books I’ve been reading for fun, usually on my Kindle. I have a to-read pile for academic books of quite scary proportions – well several piles! Academic books are trickier for me to read, due to my brain damage, because I usually can’t adjust the font etc. I also tend not to get on well with PDF-based ebooks. But I read ebooks avidly for fun, and got through a fair number this year. 89 finished so far, and there may be more yet.

My list of books completed in 2017 is online at Goodreads. I set myself, just for fun, the goal of completing 50 books this year, and have surpassed it. Particularly good again given my MS-like illness, which wipes me out for much of the time, and makes reading extremely difficult.

Looking through the list of books completed in 2017 a number of trends jump out. For example I really like fantasy and horror books. I’m not a big scifi fan, preferring fantasy, sword and sorcery, magic etc. So, for example, I’ve been continuing my read through (and reread in many cases) of all the 41 Terry Pratchett Discworld novels. I completed six more Discworld books this year, numbers 32-37 in the sequence, interspersing them with other reading material. I started reading book #38 last night.

Another series that I’ve been reading throughout the year, and will carry on doing so into 2018, is Neil Gaiman’s Sandman series of comics / graphic novels. I’ve read these before, and love them, and am rereading them on my iPad in Comixology’s guided panel view. There are 10 collected graphic novel volumes in the main Sandman series, and I read numbers 1-6 this year, and am part way through number 7. Again enjoying immensely.

Other comics that I read this year included those shortlisted for the Hugo scifi awards. As a member of the 2017 Worldcon (actually attending it, in Helsinki) I got a voter’s packet of many of the Hugo shortlisted works. And that included the comics up for the award. So I read loads of these. Many of the works, such as Saga, were parts of ongoing series, but I enjoyed them nevertheless, and have thus found more comics that I want to read in future. I also read most of the Hugo-shortlisted novelettes and novellas.

The Worldcon in Helsinki was held in August 2017, and not long after that I read several horror books in the run-up to Halloween. The first was Graeme Macrae Burnet’s Booker-shortlisted His Bloody Project, more crime than horror, but could easily fit into the latter genre too. I followed this with an annual favourite reread: Roger Zelazny’s A Night in the Lonesome October. I recommend this book to any fans of horror, weird fiction etc. Especially in the days before Halloween. It is rather designed to be read daily throughout October, though I always gobble it up more quickly. Other horror works read in October include Robin Jarvis’s The Whitby Witches, and Ray Bradbury’s The Halloween Tree. October was definitely a good month of reading for me.

Although as noted above I’m not a big fan of scifi I did read several Doctor Who books throughout the year. For me Doctor Who is less a scifi series than a storytelling engine with time travelling aspects. I also read famed scifi writer Michael Moorcock’s The Jewel in the Skull, though this is very much a fantasy novel of his, rather than the scifi that some may associate him more with.

Something new for me this year was reading a number of play scripts. I haven’t done this since I was at school, wading through Shakespeare etc. Thanks to attending a nationwide cinema screening of a live performance of Rosencrantz and Guildenstern are Dead I read the script of this play afterwards. To my surprise, finding play scripts vastly easier to read than most print books – lots of space on the page, not too much crammed text to wade through – this was followed by Liz Lochhead’s Mary Queen of Scots got her head chopped off, which I saw on stage in St Andrews in the 1990s, and Rona Munro’s trilogy The James Plays about Scottish Stewart kings James I, II and III. I have my eye on David Greig’s Dunsinane play next – definitely getting a theme here for historical Scottish ones!

Quite a few of the books I read this year were bought for me as birthday or Christmas presents, usually in ebook form for my Kindle, where I read with a gigantic font and huge line spacing – more in appearance like a Ladybird book for a 5 year old child. Such present titles read included The Moon Stallion, which I saw on the television long, long ago, and Frost Hollow Hall, another Young Adult book with a historical bent and several supernatural elements to it.

I’d like to mention the books that were my favourites this year, all of which I rated as 5-star in Goodreads. In reading order they are as follows:

  • A Hat Full of Sky by Terry Pratchett
  • The Crystal Cave by Mary Stewart, the first in her Merlin trilogy
  • The Weirdstone of Brisingamen by Alan Garner
  • The Swish of the Curtain by Pamela Brown
  • Dandelion Wine by Ray Bradbury, a love-letter to small town America and childhood in the 1920s
  • Mary Queen of Scots got her head chopped off by Liz Lochhead
  • Ms Marvel vol 5 “Super Famous” graphic novel
  • Saga vol 6 graphic novel
  • Comet in Moominland by Tove Jansson – read in the run-up to our trip to Finland
  • Peril at End House by Agatha Christie – one of my favourite Hercule Poirot stories
  • Rotherweird by Andrew Caldecott
  • Tommy v Cancer: One man’s battle against the Big C by Tommy Donbavand
  • The Moon Stallion by Brian Hayles
  • The James Plays by Rona Munro
  • The Fellowship of the Ring (Lord of the Rings part 1) by JRR Tolkien
  • A Night in the Lonesome October by Roger Zelazny
  • The Lie Tree by Frances Hardinge
  • Doctor Who Yearbook 1993
  • The Express Diaries by Nick Marsh
  • Frost Hollow Hall by Emma Carroll

To be fair many of these top-rated titles were rereads for me, including my absolute favourite Lord of the Rings. But I also found some new favourites to reread in the future, including the already-mentioned The Moon Stallion and Frost Hollow Hall, and Ray Bradbury’s Dandelion Wine.

So that’s my look back at a year of reading. It’s been fun! I look forward to reading more in 2018.

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20 years ago I was undergoing a battery of tests to try to establish which neurological disease I had. I’d fallen ill 3 years earlier, aged just 22, and was initially misdiagnosed with ME. My symptoms changed over the next few years, and looked increasingly like MS. A MRI brain scan showed multiple lesions, suggesting some form of inflammatory disease process. More tests were needed to find out what.

I had those tests on November 5th 1997, 20 years ago this weekend coming up. Scans of organs of the body, visual evoked potential test, a lumbar puncture, and many blood tests. I remember driving home to the sound and smell of fireworks. The new diagnosis came a few weeks later: cerebral vasculitis, inflammation of blood vessels of the brain, cutting off the oxygen, causing brain damage, and symptoms similar to MS.

For a long time the future looked bleak, especially after a relapse in 2004. Vasculitis is an incurable disease, but with luck – and appropriate treatment – it can go into remission. Treatment is often lifelong steroids and immunosuppression, to reduce the inflammation in the blood vessels. I’ve had a very tough time over the years, though have been more stable since I demanded high dose chemotherapy infusions in hospital throughout summer 2012. Those turned things around.

So I’m now managing on a lower cocktail of daily immunosuppression drugs. But I’m still getting worse. I recently renewed my Blue Badge and my mobility was significantly worse than when I’d last renewed 3 years ago. And I’m very disabled in other ways, including sleeping up to 18 hours a day due to the brain inflammation. I can’t work with this, and am very lucky to be alive.

But I’m happy! And still here. So thankful for that. But it’s frustrating having this condition, that I will never be rid of. It’s also difficult for people to understand what’s wrong. Even though I use mobility aids – usually 2 sticks, if not my wheelchair – most of my problems are inside, invisible.

For more on my vasculitis story see my page on the Vasculitis UK charity website.

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I want to post about a consequence of the Brexit result that many people won’t have thought of: the impact on treatment and support for rare diseases. Since 1994, since the age of 22, I have lived with cerebral vasculitis, a 1 in a million diagnosis, which causes day-to-day symptoms similar to multiple sclerosis, but with the added bonus that it could kill me in a flash. Other forms of vasculitis are less rare, but all are rare. Vasculitis = inflammation in the blood vessels. In my case in my brain. Vasculitis is very under-supported by health services worldwide, causing huge difficulties and delays in diagnosis and treatment, which often leads to death. In the UK cuts to funding have impacted on cross-border referrals for vasculitis patients in Wales, seeking to go to centres of excellence in England, to get diagnosis and/or better treatment and support. And likewise for Scottish patients. Equally many patients in England have a considerable financial outlay, for life, for prescriptions of steroids and chemotherapy drugs that keep them alive. For life. No they don’t get these for free. Charities like Vasculitis UK are working to improve things, but it is a very hard job. Much of their funding and research comes from Europe, both in terms of money, but also working with colleagues elsewhere, to uncover new treatments, and improve support for patients. It is very unclear how this is going to be affected. My friends who are actively involved in Vasculitis UK are very worried. Before any Brexit-er tells me it will be ok, there will be a way, that it isn’t directly EU, or that the UK will replace the funding: no, we don’t know what will happen. And for such a rare diagnosis it is hard enough to get support as it is. The relationship with Europe for vasculitis research and funding is important. And right now the people who are working to save lives are very very scared. This makes me sad 😦 And scared myself.

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Today is Rare Disease Day, where people living with rare diseases are promoting their experiences through social media and other forms of networking. Though this is a bit of a break from my usual academic blogging, I hope that readers will understand why I’m writing this.

I live with a 1 in a million diagnosis, falling ill when I was just 22. The name is cerebral or central nervous system vasculitis, which when it springs from nowhere – as in my case – rather than as a result of another disease has an incidence of about 1 case per million people per year. Yes I’m special! Mmmm. This disease has impacted on my abilities to be an academic, forcing me to leave one full-time science PhD and later study part-time as a historian, to PhD level (completed – yay!). And it means I can’t work in academia in a paid capacity, due to my MS-like symptoms and living with what is a progressive disease. But I try to be as productive as I can. To read more about my medical story see here, and to read more about how I’ve coped as an academic see here.

But in this post I wanted to reflect more on some issues that living with a rare disease causes, rather than something more commonly found like cancer or arthritis. These range from diagnosis, through ongoing treatment and medical research, support from the social care system, and varied degrees of understanding from family, friends and colleagues.

Firstly if you have a rare disease, getting the correct diagnosis – which can be life-saving – can be very difficult. General practitioners tend to assume a more common disease form is taking place. Even at hospital level this idea can persist. I was initially misdiagnosed with ME, which at the time (and to be honest still is the case) had no viable treatment. But my symptoms changed over the following years, looking more and more like multiple sclerosis. And progressing. It was very hard to get the GPs to take me seriously. It was only after 12 hours of unstoppable vomiting for no reason – one of my early symptoms – and a GP having to give me a midnight injection in the derriere that he referred me to hospital, extremely concerned. Even at hospital the consultant assumed my ME diagnosis was right. I had to argue with them – hard given how ill I was – why I thought it was wrong, and why more tests were needed. I was right. I had a very aggressive life-threatening disease. One shocked consultant, me just relieved that a proper diagnosis had been made, and treatment could finally start.

But then there are problems too. if you have a very rare disease it’s unlikely to get much medical research, so new treatments may not be discovered, or may not be assessed to be cost worthy and suitable for your disease. With more common forms of vasculitis – the disease I have – there is more medical research happening, particularly into those forms of the disease that are ANCA-associated. For these forms of vasculitis new treatments are developed, and approved on the NHS. But for much rarer forms like my primary cerebral vasculitis the number of patient cases around the world – and in any country – is so small that it isn’t possible to do traditional medical research trials. So my form remains largely unresearched, and there aren’t the trials and resulting scientific evidence to lead to approval for treatment with new drugs discovered for other forms of vasculitis. For example Rituximab is an extremely expensive life-saving treatment approved for ANCA forms of vasculitis. There is not scientific evidence for Rituximab in the rarer non-ANCA forms like mine, and as a result it is rarely approved by health authorities in the UK.

With such a rare diagnosis support at general practitioner level and nurse level can be a problem. They’ve probably rarely encountered any vasculitis cases, which is rare enough, let alone my specific form. I have an excellent GP who has treated me since 2004 (I fell ill in 1994), but it can be difficult to get appointments with him. Because of him being away from the surgery on one day combined with the health centre appointment system stopping named appointments on certain days it would be vastly easier for me to get an appointment with any doctor, particularly a locum, but unless they’re “my” doctor they wouldn’t know what to do with my case. I’m on an incredible cocktail of drugs as well as having something rare and exotic wrong with me, and continuity of care is important. Even with nurses who administer my monthly (and for many years weekly) blood tests things have been a little difficult, with nurses not understanding why certain tests are needed, and not initially taking my word for it. But we got there in the end. Incredibly even at hospital level there are problems if you have to see another consultant unfamiliar with a rare disease and case. My consultant since 1996 recently retired, and I was very concerned that I would be put in a general clinic where I would have to tell my medical story every time, and even after that the medic on the day wouldn’t be confident what to do. Fortunately I was passed to another consultant who was my “backup” for years. He’s young, and hopefully not retiring or moving anytime soon!

It might be expected that a medical professional should know about a rare disease, though they rarely do. But it can be harder for non-medics. This causes problems for example for people applying for benefits through the benefits system. But even with family, friends and colleagues there can be misunderstandings. My disease is largely invisible. I only use a wheelchair rarely, though I have at least one stick (and sometimes two) permanently. People often only see me for the short periods I can go outside to an event, and don’t realise how much it takes out of me, and how much I need to rest before and after events. Also because I manage to do things people can underestimate how badly I am affected. I’m particularly minded of the notorious experience of dealing with a neurologist, who because I had completed a PhD couldn’t grasp that I could have cognitive problems. I completed that PhD towards the end in 1 hour chunks, spread throughout the week, up to 5 hours total time a week if I could manage it. After each hour I would be very wobbly, couldn’t control my limbs, just from the brain concentration I’d been doing, and it might be a couple of days before I could do anything PhD-y again. Yet he thought I was fine, on the basis of a short consultation, and because I had that PhD.

Fortunately both my history PhD supervisors were hugely supportive. They quickly grasped that they didn’t need to understand the medical side of things, they just had to know how I was affected, and let me take control of my studies. I’ve also had wonderful support from the department since completing the PhD, giving me an ongoing honorary research fellowship. And conference organisers are typically very helpful if I have to use my wheelchair, letting my husband accompany me at no registration cost, to assist me.

I don’t know the numbers, but there are probably a lot more people living with rare diseases out there than people think. I’d like to think that the situation will improve for them. But it’s going to take a bit of a sea-change in attitudes, both among the general public, and among the medical profession.

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As the month nearly comes to a close I’m winding up my AcWriMo activities. And as always around this time I thought I’d look back on how things went.

At the start of the month I had three goals outlined, all involving academic journal papers in various stages of development.

Two of these goals were fully or better accomplished. One was revising an accepted paper, which I turned around in the first week and emailed to the relevant editor. Another was starting to convert a conference paper from spoken talk with PowerPoint slides to a written version suitable for an academic journal paper. I set out only intending to start this process, the first draft of converting the spoken text to words, with much further development and enhancement required later. But as things turned out I went far beyond this, developing many sections of the paper more fully, and having it much closer to possible submission to a suitable academic journal.

The remaining goal was to finish developing an already mostly written academic paper, ready to send to a colleague to read through and give suggestions before I develop it further prior to submitting to a journal editor. This was the only goal not fully completed, although I managed to overcome a major impasse, working out a new strategy for approaching one of the main case studies in the paper, which I then largely wrote up. There are many sections still to be finished off and polished, and it’s not ready for that read through yet. But it is well advanced, and I should be able to get it ready to email off by Christmas, with hopefully the aim of submitting it to an academic journal paper sometime early in 2015.

All this was achieved against the backlog of struggling for much of the month with my neurological illness, more so than usual. There were several weeks when I could barely manage an hour of writing total. And then there were better weeks when I might manage 2-3 hours total if lucky, again done in 1 hour bursts.

The main strategy I found for keeping going when well enough was to think in terms of which goals I would target in specific weeks. So I had in mind key activities for the first week, and the second week, and so on. This broke down what might still have been quite a daunting task – three quite ambitious goals for the whole month for someone so very ill with so limited time – into more manageable chunks. And if I put in the time, even in isolated one hour chunks here and there, I could make slow but steady progress. Breaking it down into week by week goals also helped to keep the momentum going, and that I had to get on with things, lest time slip by and be lost. But I did have to rest when too ill.

Academic writing month can be a wonderful focused time, but for me the best thing about it is the good habits it can help to develop, which can be applied throughout the year. So the importance of making achievable goals and to-do lists, breaking down larger tasks into manageable chunks, and keeping going, even in small bursts, to make progress in spite of time and other limitations.

So I’m very glad I took part again. I look forward to taking part in 2015!

 

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Just before the old year ends and a new one begins I thought I’d do a recap on how things have gone for me in the last year, particularly academically.

My honorary research fellowship was renewed again. This is from History in the School of Humanities at the University of Dundee. After I finished my PhD in 2010 I asked if I could get an honorary fellowship, to help me continue to access vital resources like electronic journals, which are typically only available to current staff and students of universities subscribing to them. This is particularly important as more and more university libraries switch from subscribing to print copies to e-journals, which, generally, are restricted in who can use them. I’m a life member of one local university library, and have another one nearby, but neither opens up their e-journals to people who aren’t staff or students. So this was important to allow me to keep up to speed with current research and new developments. And the fellowship has been renewed every year since. It’s also nice that when I give a conference paper or publish a new academic journal paper it provides some kudos to the department which has supported me so well.

Over the year I’ve submitted more journal papers. I learned early in January that another paper had been accepted. It’s derived from part of my PhD thesis, with new additional material, and will be published in Library & Information History in 2014. Another prize-winning paper is due to be published at some point in the Journal of the Edinburgh Bibliographical Society. And I was asked to do my first academic book review, for the Journal of Scottish Historical Studies, and it was published in November 2013. Other papers are with editors, or at various stages of development. And I was pleased to see two of my past academic papers became freely available online, under open access rules.

I took part in four academic conferences this year. The first was a conference for archivists, where I gave a talk about my experiences as a disabled user of archives. This was held locally, in a hotel in Dundee, so was easy for me to get to, but I was very weak from the neurological disease that day, and it was something of a struggle. But I wanted to present this important view, and was glad to make it. I blogged about both my time there, and the topic I was talking about.

In the summer I attended one day of a conference about the Middle Ages in the Modern World. This was at St Andrews, my former university, actually very near to where I was once a science undergraduate and postgraduate student. This was much fun. Again my husband was with me on the day, to help me manage everything in my wheelchair, and I blogged about my time there.

The third conference was that of the Economic and Social History Society of Scotland. Their autumn conference, in September, was held in Inverness, and focused on the topic of Rural Scotland. I gave a talk about my postgraduate Masters dissertation research examining Melrose regality court records (local court records for Melrose and the surrounding area) in the late 17th century. I am currently looking to publish this as an academic paper, and got very good feedback and had a very rewarding time there.

The fourth conference was held in late October to celebrate the work of my PhD supervisor who died a month earlier. It had been planned long before he died, and was a conference of mixed emotions, but ultimately positive.

I also had another flying visit to the Edinburgh International Book Festival in August. Not academic at all, but a wonderful celebration of books and reading, and I was very glad to be able to go again.

In November I took part in Academic Writing Month again. My goals were more modest this time: resubmit a revised journal paper (done), and submit a paper to the SHARP (Society for the History of Authorship, Reading and Publishing) 2014 conference in Antwerp (also done). Whether my paper for SHARP is accepted or not I will be there. I’m also planning on going in 2014 to a book history conference at St Andrews in the summer, and will be flying down to London to attend the Worldcon World sci-fi/fantasy/etc. convention at the Docklands.

Another major interest of mine is genealogy. I run a Cavers one-name study, researching all families with this surname, particularly before 1900. Developments on this in 2013 included me starting a new Y-DNA study to use DNA to look for connections between different Cavers lines. I also gave a talk about my Cavers one-name study at a Guild of One-Name Studies regional meeting at Perth. A version of this is online, with PowerPoint slides and my audio delivery.

I also run two one-place studies, where I research two parishes in the past. Both of these have a particular focus, for practical reasons, before 1820. The two parishes are Coldingham in Berwickshire, and Melrose in Roxburghshire, both Scottish Borders parishes with family connections for me. I continue to transcribe and develop online resources for these studies, and in 2013 this included adding a person index of about 9000 names for Melrose court participants between 1657 and 1676. Likewise for Coldingham I put online a list of 19th century prisoners from the parish.

I’m a roleplayer, and play Call of Cthulhu online at Play@YSDC. This works well for my neurological disease, meaning I can play as and when I’m able to. It also means I get to play with people around the world. In 2013 I started a new game in our ongoing campaign of Doctor Who / Call of Cthulhu crossover games. And I also started a game set on the Bass Rock, hopefully the first of many games (if our characters survive!) set in Scotland. Sadly I also dropped out of a game for the very first time – it was proving too unreliable in terms of keeping going, with long periods of inactivity by the keeper which I couldn’t keep up with – but I hope that won’t happen again for a long time.

Continuing the roleplaying theme I’ve been writing more of a series of crossover history/roleplaying articles, which I plan to compile into a book, probably in digital format. This is slow-going, but I hope to make more progress in 2014. Likewise I have been continuing to develop my very long-standing interactive fiction (text adventure) work in progress – a whodunnit set in Hermitage Castle in the Scottish Borders, about 500 years ago. Again another thing to work on in 2014.

My neurological disease continues to be a problem, but is being a bit better behaved at the moment, and may have gone into remission or need less daily chemotherapy and steroids to control it. I’m still left with the legacy of brain damage from the past, and wide-ranging disability that this causes. But I hope for a bit of a break from too toxic a cocktail of daily drugs. And maybe I will be able to get more done in 2014 than I have for a number of years. It may be just a temporary respite, but I want to make the most of it.

Anyway I’m looking forward to 2014 in an optimistic manner. Hopefully it will be as productive and rewarding as 2013 was.

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