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  #11  
Old 04-07-2015, 04:16 AM
Mouse Mouse is offline
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Update:

The Better Half (BH) & I went out on the bikes yesterday, to tackle a short and very familiar trail in the Easter sunshine.

I didn't fall off! Well....not completely anyway...

I took Larry's advice & wore minimal clothing, and tried to keep hydrated & cool.

My vision in the ON eye (which is also my dominant eye) reduced to about 20% as soon as my heart rate increased, but it returned to about 80% after only a few minutes of rest in the shade & looooong drag on some cold water.

Uhthoff's definitely correlates with pedalling effort!

This means:

1. Uphills are half-blind - this is fine if I stick to trails that aren't too technical.

2. Downhills are Weeeeeeeeeee!!

3. Increased concentration means I have to stop to have a drink, instead of rehydrating in the saddle.

4. Flat technical sections are the tricksiest - especially in woodland under dappled light. Pedalling effort is required, which reduces vision & this is where I had trouble.

I couldn't tell if the ground was banking to the left or right, or if a patch of contrast was a hole or a hump, so shifting my weight over to one side to correct pushed me over when I chose the wrong side.

The words of the Ophthalmologist came back to me "Predators move their heads from side to side to judge the distance to their prey". I tried that & toppled over into a bush. Maybe my movements were too exaggerated?!

Nevermind, it was all at slow speed.

It was a very useful exercise in finding out what I am going to be able to cope with with changing vision & establishing my (current) limits.

Onwards & upwards! (With maybe a few rests in between....)

Thanks Chaps!
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  #12  
Old 04-07-2015, 08:47 PM
Suebee Suebee is offline
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Mouse. Thanks for updating us on your biking. I haven't jumped on my bike because of balance issues. I'm planning on using stationary until I can purchase racing trike?!? But your approach shows your spirit. Way to go.!!! bTW. My ophthalmologist gave me helpful advice for double vision - he said you can always close one eye. He must have trained at same place as yours. suebee
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  #13  
Old 04-09-2015, 01:45 PM
cl3me cl3me is online now
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Location: Winnipeg, Manitoba, Canada
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Default ON and Mountain Biking

I am permanently monocular from a severe bout of ON in 2003, with my left eye I don't even make it on the eye chart, luckily my good eye is still perfect!

The switching from binary to mono vision must be distracting. I don't have that issue. It took some time but I have adapted to the lack of depth perception, and even better still enjoy some mountain biking. I even did a trip to the Rocky Mountains of British Colombia Canada and did some downhill.

To help adapt to mono vision this book has good tips:

"A Singular View: The Art of Seeing With One Eye" by Frank E. Brady

http://www.asingularview.com/singvie.../contents.html

I was able to get a loaner from local library.

Tips for riding - as already mentioned, stay cool. When I am overheating I like to dump water on the back of my neck from my water bottle (backpack bladder for drinking, water bottle for cooling).

Go for quality not quantity - I have to keep my single track riding shorter than I would like. Example, in Fernie, BC did a couple of downhill runs, but when I started to feel the weakness and eye fatigue, while my companions enjoyed a few more runs, I called it a day and sat on the patio and had a few brews.

Practice off road skills in a safe environment - make use of a skills park if you can. I can ride skinny's, bridges, drops still, jumping I struggle with timing so no go there. It will help hone vision and confidence. This advice was given to me by another cyclist with MS/vision issues.

Know limits. Sucks but that's the reality of MS. yet at same time you can do more than you think.

I tend to do more tame tracks now, go for the trails with nice views rather than the narly stuff. just glad I can still get out there and do it. Also do more recreational road riding, going to do local MS Bike again this year.

Karen
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Last edited by cl3me; 04-09-2015 at 01:56 PM.
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  #14  
Old 04-10-2015, 07:09 AM
myoak myoak is offline
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Just wanted to post this for those interested...

High doses of biotin in chronic progressive multiple sclerosis: A pilot study
http://www.msard-journal.com/article...006-1/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/25787192

QUOTE "Biotin activates enzymes involved in energy production and myelin synthesis.
91.3% of SPMS or PPMS patients improved clinically with high doses of biotin.
Improvement concerned chronic optic neuropathy, homonymous hemianopia or myelopathy.

In all cases improvement was delayed from 2 to 8 months following treatment׳s onset.

Two multi-centric double-blind placebo-controlled trials are currently underway." END QUOTE
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  #15  
Old 04-12-2015, 05:17 PM
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Mouse, AMF is spot on when it comes to cycling tricks with ON. My wife Laura was my spotter when mine was bad (which limited mountain biking for safety reasons). She would just ride in front of me and I'd follow her back wheel. And she would announce oncoming traffic. Worked perfectly and kept me on the bike. She's awesome!
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  #16  
Old 04-17-2015, 07:50 AM
Mouse Mouse is offline
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Default 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
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  #17  
Old 04-17-2015, 03:29 PM
cl3me cl3me is online now
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Default 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
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  #18  
Old 04-20-2015, 06:20 AM
Mouse Mouse is offline
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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?
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  #19  
Old 04-21-2015, 12:59 PM
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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.
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  #20  
Old 04-21-2015, 01:34 PM
cl3me cl3me is online now
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Default 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
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