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Help and advice needed (reading/writing/taste/smell)


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I don't know if anyone can give some advice on the above? My mother had a serious stroke in June 2010 caused by a bloodclot in her brain. Prior to the stroke she was an avid reader and diary keeper etc.

Physically she has made a fantastic recovery, however she has lost the ability to read more than a short newspaper article and although she can mostly write down a single word she cannot string words into a sentence. She has used a computer programme by Propeller called React 2 and this has been really useful but she is now very demoralised as she believes she will never get these abilities back.

We have been told that it is unlikely she will ever make a full recovery, which we accept but cannot share this with mum as she lives in hope that she will. We just wondered if anyone had found some methods or a specialist that may help her regain a little more of these abilities?

Also she says she cannot taste or smell food, and at first her weight dropped off. She has now come back to a more normal weight and seems to have a good appetite which would indicate that even if she cannot taste much at least it isn't tasting bad which I know can happen sometimes. Is it possible that these senses will return?

Anything anyone can advise would be very gratefully received. Thank you :)

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Hi & welcome.

Unless I find something that I want to read I cant concentrate either (on saying that last year I read everyone of the Harry Potter books which was a wow for me honestly)

the only way I found I could regain some things was to keep trying know that sounds daft but keeping on doing things that I found hard made it a tad easier for me...

My auntie was like that couldnt string words together she often says I'll tell you tomorrow, but she had help from OT which is what I had too writing stuff down is a help.

They thought I was going to be 80% disabled Im not so tell her never say never dont give up hope I didnt...

take care

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OMG Louise that is so strange - mum says "I'll tell you tomorrow" whenever she cannot say something too!

She does keep trying but is getting disheartened, there's no way she can read a book like the HP ones. She has picked up the kind of book like a diary/memoir but I think she cannot remember what she has read previously.

I think she is doing so much better than she thinks she is and that is probably the biggest problem, and why she is downhearted, no matter how we tell her she has improved she doesn't believe it. Honestly sometimes you do feel like you are having a normal conversation with her, we can nearly always guess what she is trying to say if she cannot get the right word.

What is OT (sorry if it is something obvious:oops:) I am really happy for you that you have made such a good recovery, think you have age on your side too! Mum is 74 now, stepdad is 82 and mostly copes really well but sometimes he gets to the end of his tether with mum's negativity and other problems, it is a lot to cope with and I wish they lived nearer.....

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OT is Occupational Therapist.

I attended a talk recently at my local stroke support group and the doctor said that improvement can happen over years regardless of the 2 year span that is usually quoted.

Have you a stroke support group in your area as they run all sorts of activities that help with the problems a stroke can leave one with.

Headway may be another port of call for your mum.

http://www.headway.org.uk/home.aspx

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Hi I could only read short magazine stories and that for a good year after, but I do sit and read books again now.Taste went for a while but has come back now.Try not to worry to much, your mom will probably read a book again soon. Jess.xxx

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Thank you for the replies :D

It is not me worrying - I think mum has made fantastic progress! It is mum's frustration at her limitations that is giving us concerns, she is very demoralised as she was such an avid reader and cannot accept that she can't (for now) do as she did.

She has had speech therapy and some occupational therapy but they have said they have gone as far as they can with her, this has upset her too :(

We just wondered if there is anything in particular that has helped others in the same situation?

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When the NHS "write you off" so to speak it is very demoralising but I know for a fact that to keep persevering on her own she will possibly still make improvements. I know of someone who is still improving 10 years down the line, all due to her own efforts, albeit very slowly.

If Headway is contacted they will give counselling to your mum which will help her deal with her issues and accept how she is now.

My advice is to contact Headway. There are members on here who are using them and will be able to give you more information.

I'm sure someone will come along soon and do just that.

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Thanks Penny, the hardest thing we are finding is getting mum to accept different help. She has had NHS and private speech therapy and both have helped very much. I will investigate Headway to see what there is available in Mum's area (Boston, Lincs) and will pass whatever I find on to my (sometimes desperate!) stepdad.

Kate xx

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I had problems concentrating on many things. I actually don't know if I could read a longer story I havent read fiction in some time, although I used to enjoy it. Something that has helped me gain some of my concentration back is sudoku puzzles. I am no master at this but I found I could start and stop any time I wanted to.

I wonder if some simpler crossword puzzles may help. Another thought is bathroom readers, each story is short, or maybe poetry.

It took us years for our brains to recognize and process all the things we experience, When the pathways are damaged the brain needs to find other bridges to cross. I think this is why I lock the front door and 2 seconds later go to lock it again. The information is in there, my brain just doesnt know where it needs to go. I am sure it is the same for your mum. Frustrating for sure. I wish you both all the best and I hope the things shared here help you.

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Your Mum needs you now and it is hard work..my daughter told me !!!!

Keep chin up and never give up ....so she cannot read as much....try giving her word games or what she likes now.

Keep happy

Singing helped me

love

WinB143 xx Good luck

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Thanks Penny, the hardest thing we are finding is getting mum to accept different help. She has had NHS and private speech therapy and both have helped very much. I will investigate Headway to see what there is available in Mum's area (Boston, Lincs) and will pass whatever I find on to my (sometimes desperate!) stepdad.

Kate xx

You may have to point out to your mum that for her to even attempt to get back to anywhere near how she used to be she must accept help.

Brutal I know it sounds.

I feel that she is not happy to be lacking in certain areas but has at the moment has lost the will to try and improve. This could be a form of depression which has hit most of us after our events. Headway can help with that or an alternative is to speak to her GP to put them in the picture as to how she is, that could trigger some sort of help.

There is a branch of Headway that meets near Boston. http://www.headway.org.uk/branches/lincolnshire.aspx.

There is also plenty of information on the Brain and Spine Foundation website. http://www.brainandspine.org.uk/about_us/index.html

Once she regains determination it is possible she will move forward. The worse thing she can do is just to accept how she is and make no effort to even try to improve.

As an example, myself, I lost the will to do anything, but dragged myself up and now continue with my life and enjoy it to the best of my ability. I have to use a walking frame but that doesn't stop me holidaying abroad on my own several times a year or doing anything within my capabilities.

There is light at the end of the tunnel.

Edited by penny
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Thank you all so much for your insight and help. Penny I will definitely investigate Headway in Lincs, thanks for the link.

Short stories, crosswords and other such games are a great idea, I am not sure she has tried these yet - my stepdad does word searches etc as it helps with his English (he is from Belgium and his natural language is Flemish!)

I got a call from him yesterday evening - he has been speaking to their GP and she has now prescribed mum some mild anti-depressants which we hope will lift her despondency a little.

In the meantime we will keep encouraging her to try short stories, poems and the word games :)

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I got a call from him yesterday evening - he has been speaking to their GP and she has now prescribed mum some mild anti-depressants which we hope will lift her despondency a little.

At least that is a start and the GP is now aware of the situation. I hope they work for your mum and she will be able to move forward.

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Yep that is strange isn’t must try & remember to tell my Auntie Lynn that next time Isee her..

I alwayshave to read the last page or two fist as I don’t remember I just find the HPbook so good when I first got out the hospital and the following year the HPfilms came out and they helped my memory so much with stuff it was so therapeuticform me anyway.

I hope youdon’t say the right word it’s frustrating when someone finishes your sentencesfor you.

I am sosorry OT is Occupational Therapist when I was in Rehab I saw the OT, I had speechtherapy which may help your Mum a lot, & also saw the philologist.

You shouldget intouch with Headway that might be a starting point for you.

Wishing youall the very best.

Edited by Louise
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Sounds like you have been along the same lines as mum Louise! She has never read Harry Potter, before her stroke she used to read real heavy going books that I would not even pick up, I think she is struggling to get any interest in different types of stories :( As for having to re-read the last page or two, I find I have to do this if I have read it last thing at night as I've forgotten it next day so can empathise with you there!

She has had quite a slot of speech therapy, not much occupational therapy - they decided she didn't need it.

I am going to investigate Headway, I think they may be able to help even if it is only meeting up and chatting with other people in a similar situation.

Take care xx

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Oh chatting to other people in a similar situ is fab thearapy (from one who knows)

I only read Harry Potter after seeing the films found that way I could imagine the caractors, thing was my memory was SO bad that because there so much in the films my husband used to ask questions about it, it was great thearapy....

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I read the first book before I saw the film and I am sure that I imagined Hagrid as Robbie Coltrane before he was cast as the character! The characters are mostly very memorable, but some of the names stick with you better than others :)

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Hello Kate and welcome to BTG.

I really hope that your dear mum finds some strength soon, it must be so hard for you and other family members seeing her so disheartened. The strength my family and friends gave me became my strength. They still do.

For a long time after my SAH I had very bad concentration, short term memory probes (which I still have), vision problems etc. It totally broke my heart that I can't read as much as I like to. I really struggled with this for a long time. Pre SAH I was reading a set of books I fell into with a passion and I'm really gutted that I can't cope with the next book in the series. It's the Earths Children series, dear Sandi if she looks in will know this set. I've still got the book and hope to read it one day, but for now the 975 pages and tiny print is too much for my lil re-arranged brain to cope with!

However, I love reading and wasn't gonna give up. I now read different styles of books and am mindful to choose ones with bigger print. It is a struggle, I do forget what I've read at times and have to go back a few pages. Sometimes I only have a short concentration span and can't read much in one go.

As others have said doing puzzles and brain training games is really good too. It did take me a good few months after SAH to be able to do that though.

One of the strangest things for me was that after my op I didnt dream, ever, and in recent weeks I've been dreaming again, how weird is that!

Our brains heal and recover in so many ways, we all just need to have some patience and understanding.

Your'll be your mums strength, just like my darlin Miss C was, and still is, mine.

I wish your mum and your family lots of luck with her recovery.

Ohh yeh, I read some of the HP books before my brain got rocked, don't think I'd cope with them now, so well done to those that have!

Take care and keep smiling,

SarahLou Xx

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Hi, Sorry about your mum or mom as we say it here in the states. I am 16 weeks out and I have not been able to read more than an article for a couple of years prior. Taste and smell, appetite? I like bland and potato chips for some reason. I can barely read the post here without being distracted. It is terrible. I have a meeting at work this week for our new online pharmacy that seemed easy enough but now that we have it I am sure I will not be able to comprehend anything at the meeting unless I am very well rested. I will need one on one training in a quite atmosphere and a notebook that I write everything down like 1. Put mouse in right hand. 2. Go to such and such screen at the top right of ….

And I was the one that use to explain it to others. YIKES, I am still hopeful I will regain more brain power. Good Luck. Mary

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Hi Mary - I hope your meeting goes well! Notebooks are vital to my mum too, when she cannot say the word in her head but she can usually write it down.

Sarah Lou - I think you have a fantastic outlook on life, very positive at what you can do. Mum's biggest problem is acceptance of the changes to her life.

What has come across to me from all your answers is there is no answer! There is no magic cure, life will never return to what it was before and we need to work with what we have. Mum is fully mobile, she can converse pretty well, she can read short items, she has a good appetite and gets out and about seeing things etc. In fact they have decided to go ahead with their annual trip to Spain. They are leaving tomorrow and will be back mid April. We are going to visit mid March.

Thank you for your advice and experiences - it has taught me a lot. I have printed out the replies and handed them to my step-dad to read. All we need to work on now is how to how to get mum to accept her limitations and be happy with what she has :)

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Hi for me on a personal note once I accepted that I wasnt going to return to the person I was or be able to do the things I did, then I started to accept the 'new me' & recovery started from there, I was told on many, many occasions that I would never fully recover but once the penny dropped I recovered & accepted it...ok not fully I manage what I can but am happy with that.

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Oh Louise I just wish mum would be like that! I am sure it goes a long way to helping you cope with life - yes there are things that you used to be able to do that you maybe cannot now but there are other things that you can do that you can focus on. I am sending you a big hug and my very best wishes - you are a very positive lady :-D

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We have been told that it is unlikely she will ever make a full recovery, which we accept but cannot share this with mum as she lives in hope that she will

Maybe its time to re-think this but remembering that we're all different in the way we recover or accept this Ronnie (my husband) always told me from the start that I wouldnt recover fully reson it took me so long was I kept forgetting he'd told me :roll:

take care

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