Comments for NystagmusBlog http://nystagmusblog.co.uk A Parents Perspective Tue, 24 Jan 2012 11:05:36 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Eye Clinic Liaison Officer- My new job :)) by June Crosby http://nystagmusblog.co.uk/2011/01/eye-clinic-liaison-officer-my-new-job/comment-page-1/#comment-6628 June Crosby Tue, 24 Jan 2012 11:05:36 +0000 http://nystagmusblog.co.uk/?p=890#comment-6628 Hi Jen Congratulations on obtaining the ECLO post. I have been the ECLO in Hull for 4 years plus. I too will be joing you in Birmingham in February. Look out for me! Wishing you success in your new post and hope the job bring syou as much satisfaction as it does me. June Hi Jen

Congratulations on obtaining the ECLO post. I have been the ECLO in Hull for 4 years plus. I too will be joing you in Birmingham in February. Look out for me! Wishing you success in your new post and hope the job bring syou as much satisfaction as it does me. June

]]> Comment on Earn charity funds | Amazon by Steve McKay http://nystagmusblog.co.uk/2011/10/earn-charity-funds-amazon/comment-page-1/#comment-5171 Steve McKay Tue, 06 Dec 2011 06:51:46 +0000 http://nystagmusblog.co.uk/?p=1616#comment-5171 Hi, you mention fundraising whilst shopping online - There are two ways you can support Nystagmus Network whilst shopping online, for Amazon etc there's Easyfundraising; http://www.easyfundraising.org.uk/causes/nystagmusnetwork/ and for ebay there's Justgiving; http://www.justgiving.com/nystagmusnetwork/ Hi, you mention fundraising whilst shopping online – There are two ways you can support Nystagmus Network whilst shopping online, for Amazon etc there’s Easyfundraising; http://www.easyfundraising.org.uk/causes/nystagmusnetwork/ and for ebay there’s Justgiving; http://www.justgiving.com/nystagmusnetwork/

]]> Comment on All New NystagmusBlog by Jack's mum http://nystagmusblog.co.uk/2011/11/all-new-nystagmusblog/comment-page-1/#comment-4868 Jack's mum Sun, 20 Nov 2011 11:26:12 +0000 http://nystagmusblog.co.uk/?p=1910#comment-4868 I really like the new look and feel website - great job :-) Glad to hear Joshua's getting on well at his new school xxx I really like the new look and feel website – great job :-)
Glad to hear Joshua’s getting on well at his new school xxx

]]> Comment on 1st day At School by imran http://nystagmusblog.co.uk/2011/09/1st-day-at-school/comment-page-1/#comment-4061 imran Sun, 02 Oct 2011 19:27:34 +0000 http://nystagmusblog.co.uk/?p=1547#comment-4061 thats great to know Joshua is having a great time at school. no, i am not in the Uk, and please share any treatment etc with me and the rest of the world by commenting on this page.thank you thats great to know Joshua is having a great time at school.
no, i am not in the Uk, and please share any treatment etc with me and the rest of the world by commenting on this page.thank you

]]> Comment on 1st day At School by Ashley http://nystagmusblog.co.uk/2011/09/1st-day-at-school/comment-page-1/#comment-4038 Ashley Thu, 29 Sep 2011 10:59:35 +0000 http://nystagmusblog.co.uk/?p=1547#comment-4038 I’m sorry to hear that you didn’t have a good time at school and continue to have difficulties in high school. Whilst it’s hard to hear commends like this I think it’s also good to open up and talk so that parents can better help and prepare for their children school experience. Joshua seems settled in at school at the moment and he has a really supported school and teaching staff. The children in Joshua’s class are only 4-5 as such very young; I don’t think they have even picked up on his Nystagmus yet. Jen & I have talked about Joshua’s school life, and we feel it’s important to keep him in the same school with his friends so when he progresses to big boy school (upper school) the majority of the children around him will be more than aware of his Nystagmus as most of them would have grown up with him. Thank you for sharing your experiences and I really hope things improve for you. Perhaps there are other members of Nystagmusblog or Nystagmus community that can provide help and advice, or perhaps have similar experiences. Do you live in the UK as I recommend visiting the <a href="http://www.nystagmusnet.org/Events_OpenDay2011.htm" rel="nofollow">Nystagmus open day in London?</a> I’m sorry to hear that you didn’t have a good time at school and continue to have difficulties in high school. Whilst it’s hard to hear commends like this I think it’s also good to open up and talk so that parents can better help and prepare for their children school experience.

Joshua seems settled in at school at the moment and he has a really supported school and teaching staff. The children in Joshua’s class are only 4-5 as such very young; I don’t think they have even picked up on his Nystagmus yet. Jen &

I have talked about Joshua’s school life, and we feel it’s important to keep him in the same school with his friends so when he progresses to big boy school (upper school) the majority of the children around him will be more than aware of his Nystagmus as most of them would have grown up with him.

Thank you for sharing your experiences and I really hope things improve for you. Perhaps there are other members of Nystagmusblog or Nystagmus community that can provide help and advice, or perhaps have similar experiences.

Do you live in the UK as I recommend visiting the Nystagmus open day in London?

]]> Comment on 1st day At School by imran http://nystagmusblog.co.uk/2011/09/1st-day-at-school/comment-page-1/#comment-4035 imran Wed, 28 Sep 2011 23:59:12 +0000 http://nystagmusblog.co.uk/?p=1547#comment-4035 the most frustrating time of my life, i had to sit in front of the class in the middle row, ( this is the maximum you can get close to the blackboard/whiteboard), and yet, i had my best friend to dictate me everything from the board. the teachers would find this as distracting and as not paying attention in class. further, during all my schooling life, we had this system of rotating rows in which each week you had to sit in the previous row to the row in which you were sitting in the last week. i always felt embarrassed and teased by other students and my mother would each year request the teacher for me to sit in the first row all year round and other students really dint like this and found it unfair. moreover i really sucked at sports and children at that age are supposed to play cricket football, etc but i would suck at these sports activities so much that i started to hate sports at all. i think telling people about my condition would win their sympathy, but i find it embarrassing and never want others to notice it and try to blend in and pretend i can see the blackboard and play sports etc. i waste time playing sports by fielding in cricket or just being the defender in football match( because i dont have to do anything important and no one will notice that he is playing or not due to this, i till this day( now in a levels ( high school) , have serious problems socializing,i cannot have eye contact, which means i cannot stare others and this makes people think i am nervous . then they ask me questions about my nystagmus, which makes me even more uncomfortable . hope your child and any other human being does not go through this experience. the most frustrating time of my life, i had to sit in front of the class in the middle row, ( this is the maximum you can get close to the blackboard/whiteboard), and yet, i had my best friend to dictate me everything from the board. the teachers would find this as distracting and as not paying attention in class. further, during all my schooling life, we had this system of rotating rows in which each week you had to sit in the previous row to the row in which you were sitting in the last week. i always felt embarrassed and teased by other students and my mother would each year request the teacher for me to sit in the first row all year round and other students really dint like this and found it unfair. moreover i really sucked at sports and children at that age are supposed to play cricket football, etc but i would suck at these sports activities so much that i started to hate sports at all.
i think telling people about my condition would win their sympathy, but i find it embarrassing and never want others to notice it and try to blend in and pretend i can see the blackboard and play sports etc. i waste time playing sports by fielding in cricket or just being the defender in football match( because i dont have to do anything important and no one will notice that he is playing or not
due to this, i till this day( now in a levels ( high school) , have serious problems socializing,i cannot have eye contact, which means i cannot stare others and this makes people think i am nervous . then they ask me questions about my nystagmus, which makes me even more uncomfortable .
hope your child and any other human being does not go through this experience.

]]> Comment on 1st day At School by Vitaly http://nystagmusblog.co.uk/2011/09/1st-day-at-school/comment-page-1/#comment-3821 Vitaly Mon, 12 Sep 2011 22:32:42 +0000 http://nystagmusblog.co.uk/?p=1547#comment-3821 Back in the day it was so hard because we did not have all these new great gadgets. I have CN and was always embarrassed because I had to sit in the very front seat in class, and of course all the "cool" kids sat in the back of the room. It looks like things have changed for the better! Good luck! Back in the day it was so hard because we did not have all these new great gadgets. I have CN and was always embarrassed because I had to sit in the very front seat in class, and of course all the “cool” kids sat in the back of the room. It looks like things have changed for the better! Good luck!

]]> Comment on Nystagmus | Breaking The Language Barrier by Steve McKay http://nystagmusblog.co.uk/2011/07/nystagmus-breaking-the-language-barrier/comment-page-1/#comment-2976 Steve McKay Thu, 21 Jul 2011 16:08:27 +0000 http://nystagmusblog.co.uk/2011/07/nystagmus-breaking-the-language-barrieropening-the-door-to-more-resources/#comment-2976 Very useful Very useful

]]> Comment on Experiences of Joshua diagnosed with Nystagmus and Amelia who does not have the condition by Katie Brown http://nystagmusblog.co.uk/2009/10/experiences-of-joshua-diagnosed-with-nystagmus-and-amelia-who-does-not-have-the-condition/comment-page-1/#comment-2948 Katie Brown Wed, 20 Jul 2011 10:26:56 +0000 http://nystagmusblog.co.uk/?p=18#comment-2948 Hi my name is Katie Brown, i am a mum of 3 girls aged 6yrs 4yrs & 15 months. My youngest daughter was diagnosed with Congenital Idiopathic Nystagmus at 6 weeks old. We are under a consultant at our local hospital and have regular 6 monthly check ups, she is also registered with a Visual Impairment Teacher who has seen her once only on a home visit for 20 mins. I am posting on here to get help and advice from sufferers and carers in order to help my daughter better. I feel very in limbo at the moment as i fully understand what Nystagmus is but dont dont know what or how my daughter sees as no one will comitt to say or even hazard a guess i just get told we wont be able to say exactly until she can tell us. As much as i believe this i feel i could be doing more to help her and i feel her emotional well being is affected by her condition too but isnt addressed. My consultant is i feel very laid back and it feels like hes sayin yeah shes got Nystagmus but ive seen worse shell be fine! And my VIT said were here to help if you need anything and promised to invite us to groups with others sufferes and to put us in touch with other families but ive heard nothing! If these are the people here to help i feel very let down and thats why im on here to get in touch with others involved in any way with Nystagmus. NN have been fantastic and invaluble for information if anyone feels they can offer advice that would be fantastic Thanks Katie x Hi my name is Katie Brown, i am a mum of 3 girls aged 6yrs 4yrs & 15 months.
My youngest daughter was diagnosed with Congenital Idiopathic Nystagmus at 6 weeks old.
We are under a consultant at our local hospital and have regular 6 monthly check ups, she is also registered with a Visual Impairment Teacher who has seen her once only on a home visit for 20 mins.
I am posting on here to get help and advice from sufferers and carers in order to help my daughter better.
I feel very in limbo at the moment as i fully understand what Nystagmus is but dont dont know what or how my daughter sees as no one will comitt to say or even hazard a guess i just get told we wont be able to say exactly until she can tell us. As much as i believe this i feel i could be doing more to help her and i feel her emotional well being is affected by her condition too but isnt addressed.
My consultant is i feel very laid back and it feels like hes sayin yeah shes got Nystagmus but ive seen worse shell be fine! And my VIT said were here to help if you need anything and promised to invite us to groups with others sufferes and to put us in touch with other families but ive heard nothing! If these are the people here to help i feel very let down and thats why im on here to get in touch with others involved in any way with Nystagmus.
NN have been fantastic and invaluble for information if anyone feels they can offer advice that would be fantastic
Thanks Katie x

]]> Comment on New forum, a great place to chat and network with other parents! by Katie Brown http://nystagmusblog.co.uk/2011/01/new-forum-a-great-place-to-chat-and-network-with-other-parents/comment-page-1/#comment-2947 Katie Brown Wed, 20 Jul 2011 10:24:17 +0000 http://nystagmusblog.co.uk/?p=898#comment-2947 Hi my name is Katie Brown, i am a mum of 3 girls aged 6yrs 4yrs & 15 months. My youngest daughter was diagnosed with Congenital Idiopathic Nystagmus at 6 weeks old. We are under a consultant at our local hospital and have regular 6 monthly check ups, she is also registered with a Visual Impairment Teacher who has seen her once only on a home visit for 20 mins. I am posting on here to get help and advice from sufferers and carers in order to help my daughter better. I feel very in limbo at the moment as i fully understand what Nystagmus is but dont dont know what or how my daughter sees as no one will comitt to say or even hazard a guess i just get told we wont be able to say exactly until she can tell us. As much as i believe this i feel i could be doing more to help her and i feel her emotional well being is affected by her condition too but isnt addressed. My consultant is i feel very laid back and it feels like hes sayin yeah shes got Nystagmus but ive seen worse shell be fine! And my VIT said were here to help if you need anything and promised to invite us to groups with others sufferes and to put us in touch with other families but ive heard nothing! If these are the people here to help i feel very let down and thats why im on here to get in touch with others involved in any way with Nystagmus. NN have been fantastic and invaluble for information if anyone feels they can offer advice that would be fantastic Thanks Katie x Hi my name is Katie Brown, i am a mum of 3 girls aged 6yrs 4yrs & 15 months.
My youngest daughter was diagnosed with Congenital Idiopathic Nystagmus at 6 weeks old.
We are under a consultant at our local hospital and have regular 6 monthly check ups, she is also registered with a Visual Impairment Teacher who has seen her once only on a home visit for 20 mins.
I am posting on here to get help and advice from sufferers and carers in order to help my daughter better.
I feel very in limbo at the moment as i fully understand what Nystagmus is but dont dont know what or how my daughter sees as no one will comitt to say or even hazard a guess i just get told we wont be able to say exactly until she can tell us. As much as i believe this i feel i could be doing more to help her and i feel her emotional well being is affected by her condition too but isnt addressed.
My consultant is i feel very laid back and it feels like hes sayin yeah shes got Nystagmus but ive seen worse shell be fine! And my VIT said were here to help if you need anything and promised to invite us to groups with others sufferes and to put us in touch with other families but ive heard nothing! If these are the people here to help i feel very let down and thats why im on here to get in touch with others involved in any way with Nystagmus.
NN have been fantastic and invaluble for information if anyone feels they can offer advice that would be fantastic
Thanks Katie x

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