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Posts Tagged ‘disability’

Really shocked at the cost of someone else receiving Evusheld privately in the UK, a preventative medicine against Covid to help immunosuppressed patients, many of whom do not generate any antibodies from vaccines. Unlike other countries the UK is not providing this publicly.

A single treatment of Evusheld lasts 6 months. It would cost up to £800 to the NHS but it’s not approved unlike so many other countries. It’s newly approved privately in the UK, and we’d been told £1000. Well someone I know has just got it. And it’s way way more than that.

£500 for consultation with a private doctor, £1600 for the drug, £160 administration. So about £2400, out of someone’s private coffers and that’s I think for just 6 months protection. This drug could save thousands of extremely vulnerable lives. Normal people can’t afford this.

I’m extremely lucky I’m getting some good antibodies, after 6 Covid vaccines (yes 6!). Though Covid vaccines trigger a devastating 3-month long neurological flare for me every single time. But Evusheld would make me feel safer, and protect others far more. Provide it on the NHS now!

Evusheld could be provided on the NHS to patients at considerably less cost per dose than private providers are selling it to patients directly. Yes it has a cost but for 500K people who are not being protected enough by vaccines and still at phenomenal risk it is needed now.

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10 years ago this month in 2012 my Scottish Historical Review journal paper was published. Sole authored, it looked at book ownership in Scotland in the late eighteenth century, using a local case study of Dumfriesshire after-death wills and inventories. This was part of my PhD research into reading habits in Scotland in this period, and this was one of the first journal papers I published after completing my PhD at Dundee University in 2010.

I thought it might be nice to do a retrospective blog about this journal paper. The paper was published in Scottish Historical Review, and the full published PDF version is available on my website, in green Open Access form on my publications web page.

This research arose from my belief that testaments – Scottish after-death wills and inventories – could be a useful guide to the books people owned. To be fair I hadn’t always thought this way. But from my research assistant work on Bob Harris’s small towns project, researching Angus towns in the late 18th and early 19th century, I had discovered that Scottish testaments often mentioned books, in particular testaments with lists of personal possessions. Not consistently, not totally reliably, but enough to be informative. Sometimes only e.g. a “bundle of books” might be valued. But in other cases you might get a detailed list of titles owned. I was grateful for any clues at all. Note this is very different from the situation in England at the same time, where comparable probate records rarely record any great details of personal possessions after the 1720s.

I couldn’t possibly research testaments across the whole of Scotland, just for the practicality of the scale of it. Nor was a random based approach suitable, given the scarcity of references. I needed to study a local area’s complete testaments over a given time period, but in a manner that had to be feasible and practical for me to tackle as a small part of my PhD. In the end I settled for Dumfriesshire, which is semi-rural, but with some towns and many villages. And logistically it was feasible for me to study this area.

I persuaded the then National Archives of Scotland (now National Records of Scotland) to lend me digital images of testaments for Dumfries Commissary Court between 1750 and 1800. At that time they had never lent such a set of records, and only agreed somewhat reluctantly because of my disability situation – my progressive neurological illness meant that it was essential I could do the bulk of this research from home. But this loan also set the precedent for similar loans for other (less disabled) Scottish academics in future.

In total I borrowed digital images of 1,379 testaments, including 345 with detailed inventories and 82 with wills. I also did a manual check in the Edinburgh search room of warrants of inventories, additional papers of appraisements and inventories, for lists including books not copied into the registers of testaments.

As I wrote in the published journal paper:

References to books were found in over a third of the detailed inventories of personal possessions recorded in a quarter of the testaments in the court’s register.

i.e. where there was a surviving detailed inventory of personal possessions then a third of the time that would contain references to books.

Most of these found references were detailed lists of books, including their titles. In other cases there were passing references to books, or in some cases valuations of book furniture (e.g. book cases). In total I had details of 156 different book owners, including considerable information about them, and in many cases also about the books that they owned.

The bulk of the paper looks at the Dumfriesshire book owners found in a variety of ways. For example their spread through time and space is considered, and also their range of occupations. Unsurprisingly many were from generally more prosperous occupations, but the list also included others like a gardener, a smith, a labourer, and a servant.

The lists of books recorded allowed the types of books owned to be considered, both in a broader pattern, and for individual owners. Ownership of religious books was a constant feature, but over time other books appeared more and more in the lists, fitting with wider trends in books and reading at this time in Scotland. Many books could also be linked to the occupations of their owners, for example legal reference works owned by solicitors (“writers”), and also the work-related books owned by merchants, etc.

Alongside religious books classical books remained an ongoing presence, but they were also accompanied by other language books, especially French. Well-known Enlightenment books were owned, as well as many books of history, and voyages and travels. Periodicals and magazines were also a frequent presence.

One of my favourite sections of the paper looked at the very largest book collections recorded in these records. Perhaps unsurprisingly these also often were the references that mentioned book furniture, given the practical implications of storing a large collection of books. The question of where people bought the books was considered in this section too, drawing briefly on a local Dumfries bookseller who appears – with his entire detailed stock list – in the Dumfriesshire testaments I studied, having died in 1788.

Preparing my paper for publication was a delight, reworking things and strengthening the analysis and contextualisation. I would like to thank Catriona Macdonald who was the then journal editor for an easy and very systematic editorial process. And thanks too to the peer reviewers for their helpful feedback and suggestions.

The only downside was that the final pre-publication proofs came through as I was undergoing a summer of gruelling chemotherapy infusions at Ninewells Hospital in Dundee. In fact I ended up having to proofread the journal paper one-handed, hooked up to a chemotherapy drip! It was that or I probably wouldn’t turn them around in time, given how ill I was likely to be (and indeed very much was) with side effects in subsequent days.

Looking back I am very proud of this paper. I hope to publish again in Scottish Historical Review in future. But this was a very positive experience, and one that I look back on fondly.

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For #WorldMentalHealthDay I live with generalised anxiety disorder, diagnosed nearly 15 years ago. My GP thought it was no wonder living with a life threatening neurological disease since 1994. Many people live with mental health issues. Talk about it. End the stigma.

I’d also like to see more awareness of how medication can help mental health patients. Sure it’s not the answer for all, but SSRI Sertraline keeps my severe anxiety in order. There needs to be less fear about drugs that can help. Especially with a shortage of availability of talking therapies.

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I’ve been reading a book about a stroke survivor, a neurologist actually. His stroke was really catastrophic, so different what I’ve experienced from my cerebral vasculitis since 1994. But there are so many shared experiences.

For example late on in his rehabilitation he would often get stuck, knowing what he wanted to do, but needing encouragement to do it. So eg sitting on the edge of the bed, but unable to stand up without encouragement. That is so familiar to me. Often I just ask my husband to encourage me to do something, like stand, or move my leg etc. I’ll typically say “I’m stuck. Help!” Often it happens when we get home from an outing, and it’s an almighty mind over matter effort to encourage me to move my legs out of the car, get up, and walk into the house, carefully. I could just vegetate there indefinitely on the spot.

Anyway an interesting book for me. I have had lots of mini strokes, and a bigger one in 2004. But I’ve had no neurology support re understanding what is going on with me, or for recovery or rehabilitation. So I battle on! But I wish I understood more about it.

The book is Surviving Stroke: The Story of a Neurologist and His Family by Helen Kennerley and Udo Kischka.

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I was hoping to see some of this year’s online NarraScope interactive fiction conference in July. But I’ve just found out that it’s running on Gather this year, a meeting/conference system based largely on a virtual model of a conference area in the computer, top-down old-style graphics with little person avatars etc. Which all sounds fine and dandy, but I’ve known people struggle with it at large events. And for disability reasons I don’t think I could manage it successfully. It can also work very poorly sometimes on mobile devices, and I would be tuning in from bed. Luckily the talks will be recorded for later viewing, speaker permissions allowing. But I’m not signing up to attend this live. I have voiced my concerns about this software to the organisers, but it would be too late to change their plans now. Interactive fiction has a very large number of disabled users, many of whom might struggle to use Gather, for different reasons eg blind or partially sighted, hand control problems, cognitive issues re processing lots of info etc.

Gather meeting software in action

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I’ve my 5th Covid vaccine coming up this week. 5th vaccine because I am eligible for the Spring Booster because I am severely immunosuppressed. Previously I had the usual first two Covid vaccines, then a special bonus 3rd primary because I’m severely immunosuppressed, then my first booster just after Christmas.

It is very likely – well almost certain – I will flare neurologically again after Covid vaccine #5. I have after the previous four Covid vaccines. If so that will probably wipe me out almost totally for another three months, starting about a week after my vaccine this week.

So this is probably my last week of a bit of respite – a bit because I am often waking up late afternoon even in this brief respite phase since the start of April after my symptoms finally eased after my 4th Covid vaccine in December.

I may seem bonkers putting myself through this repeatedly with the vaccines. But they could save my life. My medics and I are agreed that I should keep getting vaccinated. My neurological flares I can recover from, even if it takes three months each time. It is also very likely I will get a 6th Covid vaccine in the autumn …

In no way is this an anti vaccination post. Vaccines save lives, and especially people like me who are severely immunosuppressed. I had a very poor vaccine response to the first two vaccines, but my bonus 3rd one (a special pre booster one needed because I’m severely immunosuppressed) gave me a healthy dose of antibodies, which could save my life. My first booster then extended that protection. Many severely immunosuppressed people have not had such a good response, despite loads of vaccines.

But the Covid vaccines take a terrible toll on me, because my auto immune neurological disease cerebral vasculitis is in my case so unstable. Each time I have a Covid vaccine I have three months of dramatically increased bladder incontinence, crippling headaches, sleeping up to 18 hours a day and phenomenal sedation even when awake, and appalling arm and leg control. It is amazing that I am not raging about this more. In my old consultant’s words I’m just too “phlegmatic”, which I eventually realised was a bit of a compliment!

I can access antiviral treatment if I catch Covid. I can also still access free testing to help me get treatment in time. What would really help though is to have the Evusheld preventative antibody treatment, which is designed to prevent severely immunosuppressed people like me catching Covid in the first place. But the UK government hasn’t bought any Evusheld yet, unlike just about every other comparable country.

Just don’t anyone say to me we are living with Covid, or even worse Covid is over, as a dental hygienist said to me the other week. I am getting through the pandemic, but at a terrible cost in terms of how the vaccines affect me. No way is it over for me, and many other people like me.

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I’ve been taking part in an interesting Twitter thread today about problems faced by non affiliated or barely affiliated academics, essentially independent scholars without university support, including financial. It digressed slightly into different funding arrangements for postgraduates. I remembered how during my Dundee history PhD (2003-2010) many Scotland-wide PhD training events were for a long time only open to funded PhD students. I was initially unfunded for my history PhD, but later won AHRC funding. Even then as a part timer I got no stipend, unlike full timers. My PhD supervisor campaigned with others to get AHRC to provide stipends to part timers. This happened in time for me to benefit before the end of my PhD. As a part timer I was also initially ineligible for the Disabled Students Allowance, which at that time could only go to full timers. Fortunately that changed too. To be fair this is a long time ago, and much has changed. But still.

I could also go off on one about the poor support for me as a computer science PhD student from EPSRC when I fell long term ill. But that’s another story …

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Much of the current political discourse, especially in England, is about how Covid isn’t a problem any more, something we can live with. This is accompanied by removal of testing, so people will have Covid but not know. Likewise mask wearing isn’t being enforced, and many people stopped long ago. Note wearing a mask primarily protects others, not you, including the clinically extremely vulnerable you aren’t aware of just by looking at them. And this is all supposedly ok.

I’m one of those at greatest risk from Covid, being severely immunosuppressed for life, due to treatment controlling my incurable neurological disease and keeping me alive. I have been told very clearly by my medics that Covid could kill me and I must avoid catching it.

The first two Covid vaccines left me with very little protection against the vaccine. I am very lucky to have finally after my 3rd primary vaccine (an extra bonus vaccine given to the severely immunosuppressed in the UK) developed a good number of antibodies. But Covid could still potentially kill me, and I still need to avoid it.

I have been stuck in the house for two years, partly due to the risks out there, partly as my neurological disease rages. Both during the official shielding periods when I was advised by the NHS to shield, and after. The inequalities of so-called “living with Covid” are immense. It isn’t safe for me to go into a dining environment or coffee shop, or a general shop, or anywhere where people may be unmasked. Nor can I easily meet family or friends.

Yet even vaccines that may save my life have a high price. My unstable life threatening neurological disease has flared after all four past Covid vaccines. It takes me three months each time to recover. I have just about recovered from the December jab 4. I have jab 5 (Spring Booster) due any time now, which will almost certainly cause me to flare for another three months. But my medics and I are all agreed I need these vaccines.

It is no wonder I am so bitter at politicians and some of the public blithely dismissing Covid as a threat. If you haven’t lived in the shoes of someone extremely vulnerable, especially severely immunosuppressed, you can’t grasp what we’re facing, and why the risks are so high for us, especially now. In the last few weeks I have known many friends and clinically extremely vulnerable catch Covid. One friend with zero antibodies from four vaccines is fighting it now. The dangers to us are huge, but according to many politicians and the public it is just fine.

This post was prompted by a blog post from fellow academic Martin Paul Eve. He has even lower protection from the vaccines than me, and describes the situation he finds himself in eloquently.

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Another book I’m reading at the moment is The Man Who Mistook His Wife For A Hat. This is a fascinating account of tales of neurology.

Last night I was reading the tale of a woman who suddenly lost all feeling in her body, losing “proprioception”, so she could only control eg her arms, legs or even posture by looking visually and learning to focus really hard and without all the usual instinctive cues to help. This was devastating, but I was also struck by the initial description of her losing sensation in her limbs, and them going out of control, flailing around widely.

I have a 1 in a million progressive neurological disease, primary cerebral vasculitis, in a form very similar to multiple sclerosis. Feeling my limbs go out of control is a common sensation, going fuzzy, often like bubble wrap, or just very wooden and incredibly stiff. It is also more of a problem now, as my disease progresses more, and I rely even more on my two sticks and wheelchair. The account in the book struck so many similarities for me. I just wish I understood it all more.

I wish I could get more information about this from a neurologist. But I had a bad experience the time I did see a neurologist. I also know many other cerebral vasculitis patients who have had poor care from them, with neurologists often having a tendency to under treat this condition, even if they recognise the disease process. This can even in worst cases lead to death. I also know of multiple other vasculitis patients who have had a bad experience with neurologists at my local hospital. Rheumatologists are often a better bet for patients.

But yes, a fascinating book. And a recommended read.

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I was invited to speak at the Scottish History Society AGM today. Which normally would be face to face in Edinburgh, but this year – of course – is online, by Zoom. I was speaking about a forthcoming publication I have with them – transcript plus accompanying essay – about a poem recording events at the local court in Melrose in 1682. A poem written back then.

It went very well. I’ve been so extremely ill with my progressive neurological disease lately, and am still recovering from that flare in symptoms, that I was worried I wouldn’t be strong enough, especially if I’d had little sleep beforehand. When my brain shuts down it’s quick and sudden, with initially slurred speech then rapid confusion. And that could have struck at any point through my 20-minute slot (10/15-minute talk, plus time for questions after).

But I made it through. The audience enjoyed the talk, and are looking forward to reading the full piece when it is published. I was able to field the many interesting questions and discussion. The other talks were stimulating and interesting, and I was able to participate in their Q&As too. And best of all I felt engaged in and part of the academic community in a way I haven’t for ages.

Meanwhile though back to sleep more …

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