When I had my stroke in 1998 I struggled to learn to read again. It is not perfect but I can still read most books I want to. Problem started again last summer when I suffered symptoms of a mild stroke (numerous tests but nothing showed up and my inr was well within limits). I got going again but seem to be suffering another 'blip'. Constantly misreading words and then realising what I am reading doesn't make sense. I read using a kindle as it is easier to concentrate with fewer words on the page , and also use audio books but thought I'd try a thriller I saw in the library. Have given up after a few pages as my eyes are wandering all over the page. It is so frustrating. Anyone else suffer?
Problem with reading: When I had my... - Hughes Syndrome A...
Problem with reading
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panda60
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MaryFAdministrator
I think this can be quite common, after stroke or also problems with eyes if INR not quite right, but alongside your normal medical team, I would take the trouble to have an assessment with your local eye clinic, or - I took my daughter and myself along to local well known glasses shop, (chain), and and saw the head optometrist who had access to all the finer tests on eyes.. as they would be able to really help you, and fine tune what you need to do. She was so good, she immediately asked about all medications, including Plaquenil,took 45 minutes of time with my daughter and then offered to drop a line to our GP.
Mary F x
Some subterfuge to trick your brain may be called for. One of my two immediate suggestions you seem to be half way to doing on your Kindle. That is, reducing the amount of text your brain can see and skip around at any one time. If this is working to some extent, you can possibly increase its effectiveness by reading one or two lines at a time in giant type on your tv or computer screen. Also, some people are helped by covering the page with translucent coloured acetate. They come in a set of different colours so you can experiment. If you think this may help, I'll look into it further for you. Best, John.
Great! MF x
As you'll know, Hughes Syndrome shares quite a few symptoms with other conditions. While reading the posts on this site, I have my radar switched on for people with reading difficulties, as it crops up quite a lot. I'm coming to a few conclusions as to how people may be helped.
Would you (EVERYBODY & ANYBODY!) help me to possibly help others? Which of the following symptoms do you suffer with, if any? Please use the numbers if it helps.
1. Misreading words.
2. Skipping words and lines.
3. Slow reading rate.
4. Confusing letters and words that look similar.
5. Putting words in the wrong order.
6. Needing to reread for information.
7. Poor comprehension.
8. Losing place.
9. Needing to take frequent breaks from the page.
10. Avoiding reading.
11. Needing to read in dim light.
12. Problems copying from a board especially the interactive whiteboard.
13. General reluctance to read.
Thanks. I hope you get the best of all treatment! John.
I had a stroke 8 yrs ago.i had trouble keeping track of the theme and characters in a book. What i did was read books from the young adult section in the library, plus i did simple crosswords. Then eventually worked my way up to adult books
Hi lovemyheart
The thoughts you've expressed here are directly relevant to a blog I posted called 'If You Find Difficulty Reading - READ THIS!' I'd be really grateful if you'd transfer your experiences to the blog (link below) and also add your numbers from the list of issues you'll see there. Thanks so much, John.
I get this a lot recently. Since Easter in fact and particularly since the dizziness started. My Kindle is gathering dust next to my bed but the iPod is getting a good workout. I can relax with a good podcast but that's about it.
laserlight in reply to
Hi lissylou
The thoughts you've expressed here are directly relevant to a blog I posted called 'If You Find Difficulty Reading - READ THIS!' I'd be really grateful if you'd transfer your experiences to the blog (link below) and also add your numbers from the list of issues you'll see there. Thanks so much, John.
hughes-syndrome.healthunloc...
in reply to laserlight
Done! 
I have had to give up my PhD temporarily because I can no longer read, retain what I am reading or analyse what I am reading. Ihaven't looked at a book in two years. My PhD is on hold but I am afraid I am not even reading for pleasure, except excerpts from the internet for example. I have difficulty concentrating with films and dramas or TV in general.
A friend said yesterday it was about time I finished off my PhD but nobody understands what I am going through except for the Hughes community. I never put it down to Hughes but now I can see that it is judging by the above comments from other sufferers of APS/Hughes Syndrome. I do not know what to do. I thought about a Kindle but last year when I had a total knee replacement operation (which was delayed due to a stroke six months earlier) I bought a DSi and I never once felt motivated enough to use it so I save if for friends who have children for them to use when they visit.
I also get a lot of dizziness but I am on Warfarin and I thought I once read that dizziness and headaches disappeared on Warfarin but they haven't.
laserlight in reply to
Hi jumpingpeggy
The thoughts you've expressed here are directly relevant to a blog I posted called 'If You Find Difficulty Reading - READ THIS!' I'd be really grateful if you'd transfer your experiences to the blog (link below) and also add your numbers from the list of issues you'll see there. Thanks so much, John.
So sorry to read that you all (yes, its' an American South thing: "you all" But come on! Our language needs a plural 2nd person!) are having similar, but more extreme vision/retention problems then me.
My first retention problem came in college. At the time I just assumed I kept getting mono over and over and over again. But with (according to my jumbled memory -- it would cost me $90. to get the records) I had a positive ANA so I do believe I had lupus. The semester I took 19th Century British novels was very, very difficult. I got all those Dickens and Eliot characters all mixed up and had to cart around legal pads with notes to try and keep track of who was married to whom, and so on.
Then after the strokes which lead to my Hughes diagnosis I had trouble getting my eyes to track from one line to another. To this day this has left me with a useful tell that my INR is too low -- if while singing hymns in church I go from verse 2 on one line to verse 1 or 3 on another that means my blood is too thick!
Good luck.
Hi GinaD
The thoughts you've expressed here are directly relevant to a blog I posted called 'If You Find Difficulty Reading - READ THIS!' I'd be really grateful if you'd transfer your experiences to the blog (link below) and also add your numbers from the list of issues you'll see there. Thanks so much, John.
This post really touches me because reading books was always something I loved so very much. Then had small stroke in 11/06. Also more tia's than can count. Didn't get my APS diagnosis until 1/08. Anyway, after the stroke, I consider myself very fortunate because it didn't affect my talking or walking but it did affect other and less noticeable things (to others - that is). One of those was books. I can still read and comprehend what is on a computer. But books, those lovely and wonderful books which you hold and turn pages - oh dear - I would read a paragraph and my mind would wander. I could see the words so it wasn't my eyes, but my mind just could not hold attention. I don't mean to bore you, but this is what this site is for. Funny thing is, I keep buying books and have stacks of them! Actually have read one book this year and one last year, both novels. Great accomplishment! So I don't give up. And do games on computer which help improve my concentration because I absolutely believe much which was damaged in our brains can be healed; not everything and each of us is different.
Thanks for letting me spout off!
Leigha
I can recall Christmas 1998 when I couldn't even walk into a bookshop with all the lovely books on display. When I first started to try and read a lot of books went flying across the room! I can't remember how I got back into books again that time. Up until last May I felt I was ok and then everything went haywire again. I can only now read books that have a straightforward plot or else follow the text and audio version at the same time.
It was my birthday yesterday and my friend has given me the most gorgeous book about Shakespeare's World but I know I shan't be able to read it and that is so, so hard.
Happy Belated Birthday, Panda60! Gosh, I hope you enjoyed yourself, books or not! About the book on Shakespeare's World, yes, I concur, it has to be so frustrating. Yet, we are doing better than before. I used to read a myriad of subjects before, was such an avid reader, yet we have what we have right now. If the novel I get through has a complicated plot I need to go back and read parts over and over. Laugh!
Right now am in a whirlwind of sorts, am having a huge surgery in 2 weeks and it is trips to the hospital and one test after the other. Having APS does make things more complicated, always. So, won't be posting as much.... quite overwhelmed. However, I enjoyed your post and wish you the continued best with your reading efforts.
Leigha
Hi Leigha
I know you've already posted on my blog but the thoughts you've expressed here are directly relevant to a blog I posted called 'If You Find Difficulty Reading - READ THIS!' I'd be really grateful if you'd transfer your experiences to the blog (link below) and also add your numbers from the list of issues you'll see there. Thanks so much, John.
hughes-syndrome.healthunloc...
I didn't transfer my experiences, just the numbers. It is an excellent blog and it will be interesting to see what transpires further from it. Sorry not to be more involved right now, am just exhausted and overwhelmed currently.
Thanks Leigha. I hope you have a brighter day today and that you feel more energized soon. Best, John.
Gosh - yes! Reading has been a big problem for me. I have taught loads of children how to read and then found myself having to teach myself
I have tons of issues around reading; making sense of what I have read and "tracking" across the page. Initially I had no idea where to go at the end of each line and used my fingers to track each word and then each line. My eyes also "wander " across the page. After Hughes Day last Wednesday we went to the coast and for the first time in years I have read a whole book!!!!!!!!
I told my optician about the problem and he changed my lenses. I also started out reading bits from large print texts. I read non fiction books too as I found the pics helped me with the text and the pics offered a good rest from actual reading.
I find reading aloud difficult - like when we are all reading from the same text in church or singing a hymn - by the time I have read it and sung it, everyone else has moved on!
Writing is also a challenge
I think my advice , if any , would be to persevere but at your own pace. I didn't force it as my exasperation and frustration upset me. I just flicked through magazines and went slowly slowly.
It will get better honest!
L.x.
Ironically my job was teaching literacy to children who were experiencing difficulty and when I went back to work after six months off I realised I was experiencing problems they had - particularly absorbing information. Eventually it became to much and I had to give up work in 2001.
The present frustration is that I felt I was doing ok and just wish I knew what went wrong this time last year and set me back again. But will keep at it!
its funny, but sometimes i find my brain becomes too stimulated if im on a computer awhile, so i have to print things out to read them if its a long article. i found with getting my reading ability back i had to make notes in margins and underline or highlight significant areas. i do find if im reading a novel the next day i have to reread the last chapter to refresh my memory
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