Overcoming reading problems due to cerebral vasculitis

Inspired by a question that came through via Twitter today I thought I'd blog about the reading problems I've had due to my cerebral vasculitis, and how I am overcoming them.

I was always a voracious reader as a child. I read from a very young age, and remember having to send my Mum to borrow "Lord of the Rings" for me, one volume at a time, from the adult section of the library, because I was way too young to borrow it myself.

Unfortunately all that changed after 1994 when I developed cerebral vasculitis, which causes lots of strokes, usually small in my case, but causing cumulative and ongoing irreversible brain damage and subsequent disabilities.

My reading problems developed quite quickly. Within a year I was struggling to read any more, mainly due to memory problems: I'd put the book down one day, and pick it up the next, and have no idea what I'd read before. With fiction I struggled to follow plots, couldn't remember characters. In addition I was struggling more and more with my hands to hold physical books.

Fatigue was also a big issue for reading. I couldn't read for long and my brain would get very tired. I found it easier to listen to audio books, and for quite a long time got a free big old-fashioned tape player from a national UK listening library, together with big chunky tapes sent to and fro free in the post. That worked for a while, and was easier for me to "read", but I still struggled to follow plot and characters, and was just too brain tired. In addition my hearing was badly affected by the brain damage, so simply listening to the audio books was easier said than done.

So, eventually, I stopped reading books completely. That went on for years. Despite this I completed part-time postgraduate Masters and PhD history degrees, but was covering up the significant reading problems all the time, and managing in spite of them. It was particularly ironic because I was researching historic reading habits. I was ever so envious of my historic readers.

However a few years ago I started reading again, and that was wonderful. Initially it was due to my iPod touch, which I bought primarily because I'd read that it could be used well as a reading tool, and some people - who sounded like me - found it easier to concentrate on than printed books. I tried that, using the free ereader program Stanza. I downloaded lots of free ebooks, and bought others. The iPod touch was fantastic for me: easy to hold, and with adjustable fonts and spacing that I could adjust so I could read more easily and not get so brain tired. And, perhaps most significantly of all, it was a smaller area of text to focus on, which I found - again due to my brain damage problems - easier to manage than a typical print book, even large print. More recently I bought a Kindle which has me reading even more. Again I can adjust the spacing and font size to be optimal. The screen size is still smaller than a typical print book, but a bit bigger than the iPod touch, and, if anything, even better for me to race through books. I've rarely read any print books since then. Even large print is still a struggle. I had to get a large print book of "The Time Traveler's Wife" from the public library, having seen Audrey Niffenegger talk at the Edinburgh Book Festival, because it's not available as an ebook. But I constantly struggled with it, with the text swimming, and wished ever so much I could have an ebook instead.

Before my iPod touch and then Kindle I was reading virtually no books at all. In 2011 I read 101 books. That's an enormous achievement given the reading disabilities from the brain damage, and I'm so happy with it. Reading means so much to me, and to be able to read again like this is fantastic. I still have problems with memory and thus following books, though those have improved a little as I get my reading muscle into gear again. I don't try to push the reading, but only read when I'm feeling up to it. And even then I choose what I read carefully. I always have one long fiction book on the go, and a collection of short stories, and usually a couple of non-fiction works that can be dipped into. But if I'm feeling more tired or confused I'll not try the long fiction book that day that needs more attention. Children's books, including ones I loved as a child, can be easier to read. Short stories are also very well suited to anyone with memory problems. But I also read long works. For example I recently read "Pure" by Andrew Miller. And last year I reread "Our Mutual Friend" by Charles Dickens. My favourite time of day is when I settle down before sleep to work through some of my current books.

I'd be interested to know if other people with cerebral vasculitis have similar problems, especially people who've been battling it over a longer period. I know that people with other neurological diseases can benefit from the Kindle. I have friends with MS and also ME who found that buying a Kindle transformed their reading habits too. I also have a lot of friends with various forms of vasculitis (not just the brain kind) who have reported positively too.

11 Replies

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  • Hi yes I too struggle with reading after developing Cerebral Vasculitis in 2008, I used to read a lot prior to this but now due to concentration, memory and processing problems from again the brain damage from the Vasculitis I dont think I have read more than a couple of books since 2008, do you think a Kindle may be the way to go? I admire your ability to study and obtain qualifications, I am extremely glad I did mine before a I really struggle withy fatigue and cognitive problems now and have recently lost my job due to this after struggling to do this for the last 2 years since being diagnosed?

    Best wishes

    Sarah

  • Thanks Sarah. It's reassuring (albeit bad) to hear of someone else with similar problems. Yes a Kindle may help you. I find the smaller screen and adjustable spacing and font size easier to concentrate on, and thus read for longer. And there are masses of free books available for the Kindle, as well as lots of other books you can buy from Amazon. I was actually still a student when I fell ill in 1994. I'd recently started a full-time science PhD, but had to leave that, unable to put in the hours, plus losing the ability to do programming (it was a computer science PhD). I lost a lot study-wise due to the disease. It's amazing I managed the history part-time degrees: sheer determination! But I'm severely affected by fatigue and cognitive problems, and unable to work. My history degrees were managed towards the end in 1 hour chunks spread throughout the week, no more than 5 hours total a week. You can't work like that, even part-time.

  • I too was at uni in 92 when I became ill. I was studying for a Ba Ed with IT. I lost the use of all but my thumbs with my fingers digging painfully into my palms. I continually lost the ability to move. my cognitive abilities declined severely and I was extremely exhausted.

    I hadn't thought of it before, but I don't read any more - I'd read everything except horror or any inhumanity. I initially took up audio stories and fell asleep listening.I literally kept losing the plot and needed to start again even after 5 mins.

    I have problems with losing my words; losing my ability to speak, losing the ability to complete a movement. have you experienced any of these?

    I have WG and many years ago when these "interruptions" first started that it could be "vasculitis of the brain" how were you d'iagnosed?

  • I've had all those symptoms Sandra, and many many more. I was diagnosed after arguing strongly for a brain MRI. At that point I was misdiagnosed with ME. The consultant was convinced a brain MRI would be normal. No, very abnormal, which was very wrong for someone in their early 20s. More tests led to cerebral vasculitis.

  • Hi yes I too struggle with reading after developing Cerebral Vasculitis in 2008, I used to read a lot prior to this but now due to concentration, memory and processing problems from again the brain damage from the Vasculitis I dont think I have read more than a couple of books since 2008, do you think a Kindle may be the way to go? I admire your ability to study and obtain qualifications, I am extremely glad I did mine before a I really struggle withy fatigue and cognitive problems now and have recently lost my job due to this after struggling to do this for the last 2 years since being diagnosed?

    Best wishes

    Sarah

  • Hello,

    I completely agree - I love my Kindle! I was only diagnosed with Cerebral Vasculitis last year but I noticed pretty quickly that reading books was difficult for me. While I was in the hospital friends and family would bring in books for me (as I had always been a keen reader - one reason I became an English teacher) but I had the same problems of lack of concentration, forgetfulness and difficulty reading smaller fonts etc. This led to me giving up reading for a while; a past-time that I not only found relaxing but I really enjoyed.

    This was until I got a Kindle for Christmas! The fact that you can make the font larger has been so helpful and I have been able to devour books again!

    I strongly recommend getting one as they are lighter than books as well!

    Hope this helps,

    Sarah

  • Thanks Sarah. Great to hear from another CV person who has benefited massively from a Kindle. I like your use of the word "devour"!

  • I have cerebral vasculitis my daughter and son in law bought me a kindle over a year ago I would not be without it.

  • Thanks. Glad the Kindle is helping you too.

  • I too was at uni in 92 when I became ill. I was studying for a Ba Ed with IT. I lost the use of all but my thumbs with my fingers digging painfully into my palms. I continually lost the ability to move. my cognitive abilities declined severely and I was extremely exhausted.

    I hadn't thought of it before, but I don't read any more - I'd read everything except horror or any inhumanity. I initially took up audio stories and fell asleep listening.I literally kept losing the plot and needed to start again even after 5 mins.

    I have problems with losing my words; losing my ability to speak, losing the ability to complete a movement. have you experienced any of these?

    I have WG and many years ago when these "interruptions" first started it was suggested that it could be "vasculitis of the brain" how were you d'iagnosed?

    Reply to th

  • HI

    I have vasculitis in my eyes and thanks to my kindle I can read as I turn the font up to what size is suitable.

    I am also an avid sewer and have struggled not being able to do this so decided to teach myself to knit, nothing big just toys as I find it difficult to follow patterns sometimes as my meds affect my short term memory.

    so teddies dolls and dinosaurs are flying off my needles and as to what to do with them I find charities are always thankful.

    thank goodness for technology!!!!!

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