University of Leicester Hospital Research, and me...

[tony dunn]

I can read a no. plate from about 10 meters. So I"m about the same as Tom before the treatment.

[Tom]

Hello chaps,

Right, just a quick note to tell you all that this morning I passed my driving test!! Good times!

So, everyone, keep at it! Its possible with the right attitude and the right amount of effort!

[Matt]

NICE ONE TOM!!!!!

CONGRATULATIONS!!!!!

REALLY CHUFFED FOR YOU!!!

If you see a blue 16v Clio in or around Leicester stand back folks!

[Larry]

Blimey Tom, you kept that quiet, what a surprise. Cracking news, well done mate, a fine example to everyone – really pleased for you.

It’s just a shame you’ve got to have that bloke with a red flag walking in front of your car all the time though.

[James]

Congratulations Tom. Your enthusiasm and dedication to learning to drive has certainly been quite something and notably, and inspiration for others. Well done! I hope you went out to celebrate?!

P.S. Matt, nice work!

[Tom]

Haha, thank you chaps! And cheers matt cheeky!

[William]

Congratulations Tom!!!! I wish I had done more with driving (I totaled two cars clumsily..) because now I see how lucky I was to be driving in the first place.

[PJ116]

Hi Tom,

It's good to hear of a success story. My son is 10 and was diagnosed with CN at 3 months old, he has it quite mild and the optician has said that he is borderline for driving. As a parent it is always a concern that your child may not be able to do all that they wish to do but i feel a little more reassured when i read your story.

It's good to know progress is being made for the treatment of CN and i would like to wish all of you all the best for the future.

Regards

Paul

[bulan]

I think the progres made in the treatment of the nystagmus is equal to a big ZERO.

[sorria]

Hey I want to get on the trail but i dont no how.

[Larry]

Hi Sorria,

I’m not sure what the situation is regarding the drugs trials at the moment. Best thing you can do is email Rebecca McLean at Leicester University Hospital. Rebecca deals with the administration and recruitment of volunteers and arranges assessments and so on. Her email address is:
rjm19@leicester.ac.uk

If you do get around to emailing Rebecca, I’d be interested to know how you get on.

[Mike H]

I contacted Rebecca as per the email address here and, given that there appears a possibility I have undisgnosed OA, I have been offered that as a route in given that there are delays on the nystagmus side. I have my assessment this coming Friday and must say I am getting oddly excited about it. I have blogged about my understanding of how CN affects me but now I may be able to put some medical facts in place and be able to look at the research and treatment options available go me.

I'll report back if anyone is interested, not least because we have 6 pages here on the subject of Leicester and no-one has really described in detail what it is they do. I feel a blogging session on a train coming on.

Mike

[Larry]

Great stuff Mike, I look forward to a detailed account of your experiences at LUH.

I found it all hugely interesting and informative when I went but the two hour plus journey each way (by car) made it feel like a long day.

[Mike H]

I must admit that it feels weird to be looking forward to hours of tests and having to get up an hour earlier at 6 to travel 30 minutes, at least, into Manchester to go on a train journey of around two hours probably isn't going to be good but it's all positive steps as far as I'm concerned.

[Mike H]

Well it was a great aspiration to blog from the train on the way home. Unfortunately, dilated pupils rather messed that idea up I think I understand why no-one reports back in detail as a day of tests is tiring and there's also a fair amount of information to digest. To some extent I'm still coming to terms with all that and, on top of a generally tiring week, I haven't really collected my thoughts as yet. As an interim I can say that after 46 years of people telling me I have nystagmus and advising of there being no treatment I now find myself in a rather different position.

I have jerk nystagmus and, for the first time, a diagnosis of ocular albinism and some understanding of what that means. My red/green colourblindness appears to be red/green and something else. I can't actually remember as I was a bit shell-shocked from a couple of other things.

Firstly, I have no 3D vision and presumably never have. Secondly, having always been told I will never drive, and having made peace with that in my early 30s, I find that the move from short to long sight in my late 30s has moved me from about 4 or 5 lines away from driving to...1!!! Two eye tests this year failed to raise that and, looking back on my prescriptions, it would appear I have been this close for at least 5 years. A bit of a shock to day the least.

Best to stop there for now except to say that one of the things I really appreciated was that almost equal emphasis was given to treating you as a person rather than just a potential research subject. Rachel and Viral were excellent on that front although Leicester clearly wasn't the place to say I was going to see Cardiff in the play off final this weekend

Anyway, I now need to secure a referral in for management and I've been asked to go on a contact lens trial from September. It kinda feels like life us off axis a bit at the moment in light of all ths. Apologies for a bad pun there. More to follow when my energy levels increase.

Mike