Dallyup

I've recently been diagnosed with early stage age-related macular degeneration. Do any of you have any experience with how it will affect my bike riding and how quickly? I can't seem to get a definitive answer from anyone. I have no symptoms, ride bike almost daily and am concerned as to how this will work out.

Hermes

Lucentis. https://www.gene.com/gene/products/in.../tgr/lucentis/

Good luck.

dvs cycles

Which type wet or dry?

Tourister

Good luck... Is it the wet type or dry type ?... I have had the dry type for at least 10 years now.. I can no longer pass the vision test for a drivers license.. I have been to several Dr's and they all tell me the same thing... No fix for it... I do take the Bausch and Lomb Ared
vitamins which seem to slow the progression down..
I do still ride my bike (for everything now) and enjoy it... The MD had really messed up my chenter vision but my periferal bision is still intact... Have to be really careful and alert though..
The MD is slowly getting worse.. It kind of sneaks up on you... You go along and then suddely realize you used to be able to see or read something you can no longer do.. My night vision is shot and I can no longer see the numbers on the Dr's color test...
All in all it is very frustrating...

cranky old dude

I was diagnosed with AMD 8+ yrs. ago at age 49. I couldn't read fine print, coin dates, street names or other signs until I was very close to them. My eyes seem about the same or maybe just a little worse since '99. In my case I consider the disease as pre-determined destiny due to genes but prematurely metasticised due to 30+ years of rotating shift work combined with excesive levels of stress....or in other words, normal life. I assume each individual progresses through this affliction at their own rate. Mine has been very slow and I hope yours is too.

My wife reads road signs for me to avoid last minute lane changes, and I keep magnifying glasses scattered throughout the house for help seeing small stuff. I was told in '99 that there is no treatment. My greatest handicap....I can no longer see well enough to work on my own car and it's tough to visually tune the drive train on my bikes. Not a big deal really. Oh, and I keep my disease a secret from my employer. My bride can't work making me the sole bread winner so "mums the word.....".

Good luck to you

Happy Trails

Tourister

You must also have the slower but untreatable dry type.. Are you taking the vitamins for yours ?... Like you said each indvidual rogresses at a different rate.. As for reading, to read this forum anymore I have to kick the screen up to 125 percent to read it... Same problem as you with street signs etc... I also have a problem if the sign or type is to big.. It is so full of holes I can;t read it... Have a lot of trouble with photographs etc...
My father in law has the wet type... They have shots they give him in the eyes and do some laser surgery to remove scar tissue or whatever... He seems to be holding.. When it deteriorates to a point he goes in and gets more shots and or surgery..
With me so much depends on the lighting... In the bright sun I can read pretty good.. In the average lit house I need a flashlight to read the thermometer etc... I listen to TV more the try and watch it anymore...
Life goes on...

Dallyup

I have the dry type, eye doc says he wouldn't have noticed it if he hadn't taken pics 2 years ago and noticed the change, I may check with an opthomologist for a second opinion

Tourister

Most definitly check with an Opthomologist.. I have seen three different ones just to make sure they all tell the same story.. Hopefully he started you on the vitamins ?... All the Opthomologists I saw were quite adament about taking them... I think they have slowed the progression down.. At least compared to what was happening before I started on them.. If you have MD you need to be taking the vitamins... They aren't that expensive.. About 18 dollars a month ... They advertise the same ones (Paul Harvey) for a couple hundred a month if you want to pay more :-).

Velodiva

More information at https://www.lucentis.com/lucentis/index.html

About age-related macular degeneration (AMD)
AMD is a chronic condition that causes central vision loss. Millions of Americans have AMD, and it is a leading cause of blindness in people aged 60 and older. There are 2 forms of AMD—wet and dry. Dry AMD is more common—more than 8 out of 10 AMD patients have dry AMD. How many people have wet AMD? About 1 in 10 of those with dry AMD will get wet AMD, and about 200,000 people are diagnosed with wet AMD every year.

Dry AMD: the most common form of AMD
Dry AMD occurs when cells under the macula break down and create drusen. Drusen are yellow deposits under the retina. For some people, drusen can cause you to lose vision. Others may have little or no change. Sometimes, dry AMD goes unnoticed, so it's important to have your eyes examined regularly.

Symptoms of dry AMD may include:
Print appearing more and more blurry
Colors appearing less bright
Hazy vision
Wet AMD: the most serious form of AMD
Wet AMD occurs when certain proteins cause abnormal blood vessel growth in the back of the eye. As the blood vessels grow, they can leak blood and fluid, which damage the macula—the part of the retina that lets you see the color and fine detail. This is how the condition can cause central vision loss.

Symptoms of wet AMD may include:
Straight lines or faces appear wavy
Doorways seeming crooked
A central blurry or blind spot
AMD can occur in 1 eye or both
If you have AMD in 1 eye, it's important to carefully monitor the other eye. That's because there's a 50% chance you will develop AMD in your other eye within 5 years. For this reason, tell your eye doctor about any vision changes.

Common risk factors of AMD are:
Age: being 60 years of age or older
Family history/genetics: if AMD runs in your family or you have a certain abnormal gene
Gender: women are more likely to get AMD
Smoking
Obesity
Low levels of zinc and vitamins A, C, and E
Cardiovascular disease: if you have high blood pressure, stroke, heart attack, and heart disease
with chest pain
Race: AMD is more common among white people

Lucentis is an FDA-approved treatment for wet AMD.

Tourister

That pretty well describes it :-)... Last visit the Dr told me they are working on "Gene Therapy: for this problem... Apparently they attach a gene to a virus and inject it in you.. The virus invades the cells and they reproduce it ... Still in the early stages of development though... I recently had some friends tell me they can tell I have the problem.. When I talk to them I am never looking directly at them... Always to the side since my center vision is shot... I wasn't aware it was that obvious...

thomas_san

Hi there ,
i was diagnosed with a form of macular dystrophy at the early age of 14 years old, and i am now 34.
I have been riding my road bike for around 6 years, and last year i had a big accident with it and broke my back bone remaining almost paralyzed for it, but fortunately i wasn't
I stoped now riding my bike because after 6 month i am still recovering from it, but of course i am planning on riding again.
so what i can suggest you, is this,

1) always ride on the road and never on the pedestrian area. It might sound strange , but for people with our problem, pedestrian area could be more dangerous, and not only for us. I had my accident on a pedestrian area crashing right into a mile stone, fortunately wasn't a small kid....)

2) Of course always use nice and clean and good sunglasses.

3)Ride slow or not to fast and if possible not alone, and not in the cities, i noticed that riding in the middle of the nature its way better and its easy to see things, plus there aren't many obstacles you need to worry too much about.

This are the only recommendations i can give you, i hope they can help you, be careful and enjoy your rides, and NEVER GIVE UP!

VNA

See a doctor that specializes in AMD and all about the retina--not that many out there with all the equipment required from photographic to scanners etc. see: West Coast Retina But I would suspect a similar outfit exists not too far from where you are. I bet you were told that "drusens" were present, you should ask their size? There is a lot of information on the internet and the link above.

If you have early AMD you are lucky because it takes many many years before you notice symptoms. Usually need more light and some colors are harder to discern etc. but those symptoms are relatively easy to live with. The last stage is no fun but it takes again so many years as in my case more than 20 years if not more.

For sure wear sun glasses always, take the specific vitamins to slow the progress, stay away from smokers and keep your weight down.

Note this is for the dry form--the wet form is drastic and different.

VNA

Thank you for your very informative post except at worth AMD will not cause blindness--only the central vision is affected which is still very debilitating. The macula is for the central sharp and color vision made up of cones and rods that are being destroyed by drusens!

I have the dry form at the last stage with distorted but relatively sharp vision, the brain interestingly enough adjusts somewhat the distortion. 3 months ago was given a very thorough diagnostic and it was very hard to accept, I ride with not too much trouble, but I don't care much driving any more! No dark spot in central vision yet--keep my fingers crossed. For more than 15-20 years was told I had drusens and did not think too much, but a regular ophthalmologist will not have enough equipment to give a very precise diagnostic. 69 and ride more than 100 miles a week in mostly hilly area.

Wishing the best to everyone suffering from AMD.

Carbonfiberboy 

I've had AMD for many years. It's been stable, getting no worse. I have the dry kind. The whole idea is to prevent it from turning into the wet kind.

What I do:
Never go out in sunlight without wearing dark glasses. If you use photochromic lenses, wear clip-ons in the car. I wear photochromics so I don't have to think about it when I go outside.

Diet is important, especially the mix of fatty acids you consume. Use canola and olive oils only. Eat fish and take fish oil caps. Google "amd fatty acids"

Take AREDS vitamins (google). I use https://www.amazon.com/dp/B00B0JVPG8/ and https://www.bodybuilding.com/store/t...hout-iron.html
because the AREDS branded stuff is so expensive for what it is.

LAriverRat

You do realize that the OP posted in 2009. Still a relative post though.

Cougrrcj

My 84+ -yr old mother is struggling with this Macular Degeneration issue... After failing her driver's license test twice, she has FINALLY resigned herself to not driving... For the past ~10 years, it has been scary to be in the same car with her behind the wheel. Multiple 'parking issues' (what I would euphemistically call 'parking by braille') and other 'judgemental incidents' have resulted in every corner of her car being repainted, and the latest 'beaching' of her car on a median have proven to the family that she really doesn't belong on the road. How do you break it to your loved one that they shouldn't be driving any more???