Uhthoff's, optic neuritis & mountain biking

[Mouse]

Thanks!

Hi All,

Thanks for your support & encouragement. The handy tips are invaluable, too.

I have been out on the bike twice now, and I'm just about to go out again. BH is being very patient (he's fighting the urge to tear off at speed - rather than wait for me & help me out - I know how he feels...).

The temperature & light levels have increase massively over the past week, and at the mo, I think I just have to accept that singletrack isn't really an option for me. Saying that, we are just about to tackle one of the more well known bridleways around here....but it's not too technical.

Karen it's good to know monocularity doesn't hamper a dedicated mtber! You go, girl! When my vision was really poor, I bought myself an eyepatch (Avaast, Jim laaad, before I cleave you in twain from yer navel to yer gizzard...pass me the rum...), and started adapting to one-eyed life. But then my eye woke up a bit. I suppose, if the Uhthoff's doesn't go away, then it might be an eyedea (sorry..) to practice with the patch again & see if I can retrain the brain? Or would this just be too confusing for my tiny little mind?

Anyway, Alpine singletrack holiday is cancelled. (Boooo!) and apparently I can't have a new bike for my 40th birthday this summer (BOOOOOO!!). I shall now go and have a full on tantrum in a supermarket, and return to my 3 year old self, when life was much more simple!

Or, I could just work on the BH and try & make him realise that there are bikes that are specifically made for road use, and this can also be loads of fun......Weeeeeeeee!

Juliet

[cl3me]

Eye Patch

Eye patch I found helpful to switch brain from left eye dominant (now the virtually totally blind eye) to right eye dominant. Caution though, my Opthamalogist did say to only use for short periods otherwise risk left eye becoming weaker and thus develop double vision.

At work I often will cover my bad eye when I'm trying to focus on something, or if things are more blurry than usual, I get weird looks but it helps.

Weather/spring finally here in "Winterpeg", oops I mean "Winnipeg" Canada. Bikes are all tuned up and did my first bit of trails.

Ride on!
Karen

[Mouse]

Karen - interesting advice from your Ophth, thank you. I hadn't really appreciated that using an eyepatch would also weaken the patched eye. This would not be good at all.

I am currently between spectacle prescriptions. My current specs are now damaging my good eye - Leftie: previously know as 'lazy eye' - has had to buck its ideas up significantly, and I am very proud of how it has performed so far. Rubbish eye Rightie - previously known as 'dominant eye' - is changing every day, but still seems to be improving, and I don't want to discourage that!

Neurologist has suggested I wait another few months before I have another eye test & new prescription specs.

How long ago did it take for you to adapt to your new level of vision?

[ActiveMSers]

Your neuro is right to wait on new specs. I was 20-40 corrected, near the limit for driving (which frustrated the heck out of my eye doctor, as glasses couldn't help) for months. My color vision also went. But eventually everything went back to a hunky dory 20-20 (with glasses). That's fortunate, as I have many MS friends with vision issues. Just know that ON won't necessarily stick around... but it's smart to adapt now if it does.

[cl3me]

ON recovery

My bout of ON started sep 2003, was so bad was completely non light perceptive for about a month in left eye. Then some slight improvement over the next few weeks, but there has been virtually no further improvement after six months post ON attack (2004) I don't even make it on the eye chart with left (counting fingers) but lucky good eye still 20.

took me about a year to get to point where I can say fully adapted.....still drive (have a special review mirror), back to full time work, riding, not bumping into walls/doorways, and to get to point where I 'forget'.

Forgot to mention previous, For biking, if I'm doing a new trail I get off and walk it first and get a good look.

Work I use magnification software and large print to reduce eye strain/fatigue.

Hope yours recovers more and settles soon....the changes are disorienting!

Cheers
Karen

[allanmiller735]

Borrowing equipment

If you can't afford to buy a cooling vest or other cooling products contact your MS Society. They will likely have funds to buy equipment for you or they might have equipment they can loan to you.

The best cooling towels I've found are Mission Enduracool sports towels available in many sports outlets in the USA, harder to find here in Canada.

[ActiveMSers]

With heat in full swing in the Northern Hemisphere, this topic is, well, rather hot. Bumping.

[Sparky10]

Mouse, I realize this is an old thread, and thank you to Dave for the resurrection, but I'm hoping you might still be interested in this subject.

I used to experience Uhthoff's. For me, it was strictly temperature (read:heat) related, and induced the visual pseudoexacerbation you describe. Yes, cooling vests are expensive. Have you looked in to any organizations in the UK that offer a cooling equipment program? Luckily we have the MSAssociation of America here in the states. Over the years I have received 2 different cooling vests from them, for free.