Music by 21 year old man with Nystagmus

[rspencermusic]

hi there, my name is richard spencer and i have congenital nystagmus and it ruins my life!! i am currently depressed and am waiting for a cure!! but before i realised how unlucky i am i was ignorant to it for 21 years, anyway here is my song different universe

http://www.youtube.com/watch?v=M6Guvsqyvfo

copy and paste this into your browser to have a listen and watch the video, im hoping Sir James Colway will get to see it!!


Thank you

[dqbiggerfam]

I wasn't much older than you when I was informally diagnosed. Basically, a friend of my mom's said "You know he has Nystagmus right?". It was a surprise to us, although it would have explained, and helped, a lot through middle and Highschool(granted, mine is really light, but still would have been good to know then). I realize N is different for every person, but you have access to a support group now. We just may come up with solutions that will help you.

[rspencermusic]

I wish mine was slight!!! unfortunately as you can see in the video its not but i hope to go to University of Leicester to get help from the professor there with mine! tell me can you drive with yours?? and how is your vision?

[rspencermusic]

I really wish mine was slight! unfortunately its not and i have struggled my whole life with it and am finding it hard to cope with but i'm hoping to go to the university of Leicester where treatments and studying is being done.

[dqbiggerfam]

Sorry, can't help you with driving. 1) no parking for my apartment 2) At this point, I can see the road, the gauges or a single mirror(Pick one), which is not safe, not even on our 2 lane roads, much less 3 or more. I am "fortunate" enough to live in a town where anything that's not within walking distance, is a short bike ride or inexpensive($6) cab ride away. Even if I did have tips for driving here, I've been told the UK driving license regulations are a lot tougher than the US in terms of alternative licenses(daytime only, for instance), and assistive tech, such as bioptics. I will leave that up to the UK members.

[klclark]

Hi Richard,

I have just watched the video (lovely voice btw) and could hardly see your nystagmus compared to my daughters which worries me slightly! She is only 7 months but hers is huge compared to yours. Having never met or seen anyone with a nystagmus I thought hers must be 'normal'. The movement of her eye is not constant and moves much more significantly than your 'neat' little movements.

Can I ask why you say it has ruined your life? Hope things improve for you.

Stay strong,
Kate

[John Sanders]

Hi Kate,

Nystagmus eye movements do vary a lot from person to person. However, it's worth pointing out that they are usually most obvious in babies. The size (amplitude) and speed (frequency) of the movements generally tend to reduce or "dampen down" by the age of five or six if not sooner.

I hope this helps.

John

[rspencermusic]

Hi Kate its Richard, i guess saying it has ruined my life was a exaggeration, yes it does make things a little difficult but it doesnt ruin my life i was in a bad place when i wrote that. Mine was also bad at that age and what you find with nystagmus and what my parents have said is that it gets better over age. mine certainly did and im sure your daughters will aswell, usually around the age of 5 or 6 is when they will be alot better so dont worry. also if your daughters case does turn out to be quite bad and is from side to side there is a surgery which can lessen it called a horizontal tendotomy which has helped alot of people and i believe is available on the NHS, i hope this has been helpfull and please feel free to e-mail me any questions you have at spence_89@yahoo.com