Les Jones: Macular Degeneration

October 03, 2003

Macular Degeneration > Macular Degeneration

I took my mom to a new doctor today to see if he could do anything for her vision. She's 77 and is legally blind due to age-related macular degeneration and cataracts. The cataracts would be easy to treat, except that you're apparently not supposed to have cataract surgery while you have macular degeneration. (There's at least one study saying that cataract surgery is OK, but that study reviewed cases of mild MD.)

One eye is almost completely blind, even after surgery. She's had several surgeries in the other eye, but the doctor now thinks he can't do anything else for her. She's also taken Lutein, which is supposed to help. There's a "wet" and "dry" version of MD. She has the wet type. The surgeries were mostly laser surgeries to seal off blood vessels.

The new doctor's specialty is helping patients deal with low vision. After some extensive testing and interviews, mom tried a few things to help her see. The simplest is a couple of lighted magnifying lenses, one big for the house, and another small for her purse so she can read restaurant menus. They use excellent German optics and are much better than the dimestore style. As my brother put it, you can see a serial number on a pubic hair.

Another option is the "Jordi." It's a video camera and close-proximity viewing screen, with a belt-mounted battery pack with zoom controls up to 10x. It's head-mounted, much like a headlamp used for caving. Using the Jordi, she can see clearly at a distance. It's too awkward for everyday use, but would be useful for watching movies in the theater or taking in the scenery outdoors.

The video unit can be mounted on a scanner device with a movable stage (like a microfiche reader) for viewing documents and writing checks. The video signal is output to a television or computer monitor.

Another nice thing about the Jordi is that it accepts feeds from other video devices, like DVDs and VCRs, so she can watch TV, which is difficult now. We're moving her TVs around this week, so she can watch the biggest TV in the den instead of the living room. Total cost for the Jordi is $3,000 for the setup, including a video monitor. She's thinking about it.

Mom is actually doing really well through all of this. It's been scary for her, but she has a good sense of humor about it.

She's also pretty smart. During the interview, she was asked how she handles money when she has trouble seeomg the numbers. It turns out she puts different denominations in different slots in her billfold. If she's at a store where she doesn't know the cashier, she'll say out loud - with enough volume that other customers can hear - "Was that a 20 dollar bill I gave you?" She's also learned the number of steps between rooms for those times after surgery when her vision is especially bad.

I'm posting this as a "what's going on" post, but also to inform, and to get more info from anyone who has experience with macular degenaration in their family.

Posted by lesjones

Comments

Paul harvey suggests Ocular Nutrition from Hi Health. A vitamin supplement that is supposed to work well. Look into it. It has supposedly cleared people up in 2 weeks.

Posted by: SayUncle at October 03, 2003

I think that's a Lutein supplement, which she's been taking.

Maybe what she really needs is a new radio. "Friends, let me about the Bose Wave Radio. It's like having a symphony in your bedroom."

Posted by: Les Jones at October 03, 2003

Thanks for the info I had just seen or I mean heard,as I was doing something in the kitchen, about this divice called the jordi and I missed some of it. Where can you get information on the Jordi to purchase it? My mother is going thru the same thing only she hasn't had the surgury's but she can't see to do her sewing or any of her crafts she did just a couple of years ago. She also has a good attitude which is great I'm not so sure I would be. She is now living across the street from me so I can take her to do errands etc. She also is taking that Lutein but hasn't done anything. I sure hope they can find a cure for this soon. I effects so many people especially seniors. Thanks so much for the information.

Donna osborne

Posted by: Donna Osborne at November 26, 2003

Yeah, losing your sight can't be easy. I've thought about all of the things I enjoy doing, and I couldn't do any of them without my eyes.

These people apparently sell the Jordi:

http://www.eyeassociates.com/jordi.htm

Good to luck to you and your mom.

Posted by: Les Jones at November 26, 2003

I was diagnosed with age related md 5 months ago and am just beginning to realize what truly lies ahead and am trying to adjust. I've been a real estate broker for 28 years, but my true love has always been my music. Thank heavens it wasn't my hearing! I think of all the $ I'll be saving on new cars in future....WOW! I'm hanging in there with this last Lincoln. I was always a crummy driver anyway. I've performed professionally since I was 5 years old, but haven't done anything for the past 10-12 years. The generosity of this disease is that one does have time to plan. So I've been hitting the keyboard and vocalizing while I am still able to read music somewhat. I'm planning on going from a fiesty Realtor to a sexy chanteuse in her 60's behind a baby grand! Thanks for the tip on the jordi. I've put it in my log book for save keeping, jeez, just thought, better put it somewhere where I can find it. I'll never be able to find it there when I need it...I'll be blind! What a dope! Feel free to e-mail me....mkjones@fone.net. I live in a very sparcely inhabited mountain area of southern Colorado and don't really have anyone to talk with about this. Thanks. Mary Kay

Posted by: Mary Kay Jones at January 06, 2004

Sir,
My friend has a problem of macular degenaration.Now his age is 16.He is in the type DRY.But there is no medicine for MACULAR DEGENARATION(research).If any research is going on (or)medicine to be found out recently.He is coming from poor family.Please help him for the idea of forecoming research .We don't have an idea about treatment.Is there any foreign research going on?please convey the message for me. thankyou
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