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Sun 14 May, 2006 09:48 am
My mother was diagnosed with early stages of macular degeneration. Her father had it, was nearly entirely blind by the time he died (at 90). My mother is freaked out. I have started to read up on the disease and will continue to do so. <wanted to get a thread going on it before I forgot again>. Will be posting info and links.
http://www.eyesight.org/Table_of_Contents/table_of_contents.html
Oh dear, your family has had to deal with a lot lately.
(How is your nephew doing?)
Ray of Light department. A childhood friend of mine with macular degeneration (I forget whether "wet" or "dry" but it was the nastier of the two) has been on a semi-experimental medicine for several years.
She's hasn't regained the sight she lost, but she's not losing any more.
Hold your dominion.
Soz, yes we have! My nephew seems fine. He has a benign tumor which could mean trouble in other ways (other thread). He needs genetic testing done to find out whether he has the disposition for it. That test is set for a week from monday.
Noddy, is the medicine your friend taking a compilation of vitamins? Could you tell me the name?
I signed up with a MD site when Set first got the diagnosis.
I got some free testing materials, and get regular newsletters about treatments. Medlineplus is still (for me) the best source of information overall.
http://medlineplus.gov/
From the Gardner's Disease thread.... it's better here:
littlek wrote:My dad recently went on BP medication for the first time. It's either making him lethargic or he's depressed about something (all the meds, no doubt). My mother was just diagnosed with macular degeneration (like her dad had). My dad feared he had throat cancer, but what he has is a schatski's ring (a ridge-ring low on the asophagus) which catches food sometimes. Both of my parents have been very physically healthy until they hit 60. Since then, it's been one thing after another, starting with my dad's angioplasty.
Thanks for the link, Bethie.
Littlek--
I've been meaning to give her a call--now I have a double reason to do so.
My dad showed symptoms 20 years ago and is now blind. He was part of a control group study but I'm afraid he must have been taking placebos for he never got better. I'm afraid I probably will start showing symptoms too
Macular Degeneration
Oh littlek what nasty news. I am so sorry.
I know many people with macular degeneration, including, sad to say, Significant Other. We have tried various types of glasses, and with diligent practice I think special lenses can compensate to a good degree. S. O. lacks the ability to persist in learning to use these, unfortunately.
One kind S.O. tried was designed to make use of the vision on the sides of the eye; another provided, among other features, great magnification and would have enabled S.O. to read at least to some extent.
I have a cousin whose macular degeneration has progressed to a most severe level, but she has glasses that enable her to watch her grandchildren's Little League games, and so on. She also has a computer program which reads her email aloud very satisfactorily.
I hope your mother will be able to take advantage of one or more of the aids that are available. Ask her eye doctor, her optometrist, and anyone else you can think of. Get in touch with your state and local services for the blind - they can be enormously helpful. Look for websites that use the term "low vision", not just "blindness" or "macular degeneration".
In short, there are a number of devices available, many of them sufficiently helpful to warrant investigation. None of them will substitute for true vision, but your mother can take some comfort in knowing that she will not be completely blind. As our retina specialist said, she will not go bumping into the furniture. S.O. has been legally blind for several years, but there is a difference between "legally blind" and really blind. A vast difference.
Macular Degeneration
One of the visual aids S.O. tried was glasses to enhance the use of peripheral vision. That's what I was trying to say, but couldn't think of the term. These glasses can be very helpful, but they take hard work and regular practice.
Macular Degeneration
Contact the Schepens Eye Research Institute for information. They are leaders in the field of retinal problems, and the ophthmalologist who prescribed the peripheral vision glasses for S.O. was connected with them.
TomKitten, thanks for your posts! My mother's vision is fine right now. Knowing what I know about my grandfather, I tried to sooth her with the idea that she wouldn't be totally blind. She is a bit dramatic and pessimistic and will come around, but only eventually. My brother works at Perkins School for the Blind, so I imagine he'll be able to help her with the technical stuff when and if the time comes - could be 20 years from now.
I'll check out the Schepens Eye Research Institute...... Sorry about your S.O. and cousin! Sounds like this is a common problem.
Macular Degeneration
Yes, it is definitely a common problem. If I'm right, it's the leading cause of blindness in the U.S. But, again, legal blindness is far removed from total blindness.
I can understand your mother's reaction; I hope you can calm her down, and that she will accept the idea of playing it day by day, not worrying more than she can help about what may be down the road.
You're lucky in having the contact at Perkins. Your brother should be able to give you really good ideas and support.
Be sure to have someone - you, your brother, or some other halpful person - with your mother at all times when she sees the eye doctor. I only learned about S.O. being legally blind by accident - it was mentioned in passing sometime after a checkup with the retina specialist. I had not been in the treatment room at the time - it was a laser treatment, and I wasn't permitted to go in. If you can't be with her, be sure to question the doctor closely before leaving the office.
I wish all of you good luck.
I was told that my problem could be solved with laser surgery--thousands and thousands of dollars which i don't have at my disposal. The condition is more or less "in remission"--it hasn't improved, but it stopped getting worse. It certainly teaches one to appreciate something which we normally take for granted.
thanks thanks thanks........
I really will get around to making that phone call.
Meanwhile, this sounds promising:
http://www.kansascity.com/mld/kansascity/news/nation/14815235.htm
Still must make that telephone call. Meanwhile, from last weeks
U.S. News & World report:
[quote]Hope for People Facing Blindness
A new treatment for the wet form of age-related macular degeneration-a leading cause of vision loss in people over 50-appears to be a big improvement over the current therapy. The condition occurs when blood vessels in the eye grow abnormally and leak fluid into the central retina. Two studies in last week's New England Journal of Medicine found that 95 percent of patients given monthly injections of ranibizumab (Lucentis) into the eye to inhibit vessel growth retained their vision. That compared with about 60 percent of those given the usual therapy, which uses a laser to close off leaking vessels. And about one third of the Lucentis group actually experienced improvement; 5 percent of the control group did. "It's amazing to have something that helps this much," says study leader David Brown, a retinal specialist at the Methodist Hospital in Houston, whose research was funded by drug maker Genentech. But Lucentis costs some $2,000 per monthly injection. Avastin, a similar drug for colon cancer, is being studied and could provide a much cheaper alternative. - Deborah Kotz
[/quote]
Also:
http://www.usnews.com/usnews/health/briefs/eyehealth/hb050314a.htm
With some useful links.
That's encouraging news . . . not that i can necessarily avail myself of the resource. But, on a personal note, the good news for me is that i'm still not completely blind yet.
I had saved this article from the Washington Post in September. Not that it's any immediate help, but it's interesting..
Stem Cell Experiments Slow Vision Loss in Rats
By Rick Weiss
Washington Post Staff Writer
Thursday, September 21, 2006; Page A12
Researchers will report today that cells grown from human embryonic stem cells slowed vision loss when injected into the eyes of rats with a disease similar to macular degeneration, the leading cause of blindness in people older than 55.
The experiments do not prove that the cells, obtained through the destruction of human embryos, will work in people. But by showing that the cells have the potential to fill in for failing cells in the retina, experts said, the work may help justify trying the technique in humans.
Raymond D. Lund, then at the University of Utah's John A. Moran Eye Center in Salt Lake City, and Robert Lanza of Advanced Cell Technology Inc. (ACT) in Worcester, Mass., started by developing a reliable method for turning embryonic stem cells into retinal pigment epithelium cells, which nourish the light-sensitive "photoreceptor" cells in the eye. In macular degeneration, the pigment cells gradually disappear.
The researchers achieved the transformation in all 18 stem cell lines they worked with -- including some provided by the National Institutes of Health and others developed privately at Harvard University and at ACT -- proving that their approach can consistently produce the crucial pigment cells. Then they injected the cells, about 20,000 per eye, into the retinas of 14 rats with a genetic disease similar to macular degeneration. Eight control rats received eye injections without any cells.
Forty days after treatment, the team measured retinal electrical activity in response to flashes of light, and it found that the treated rats were twice as responsive as the untreated ones, which by then were going blind. A separate test -- which tracks eye and head movements in response to a moving display, a measure of an animal's ability to discern fine details -- showed that the treated rats had twice the visual acuity of the untreated rats nearly three months after treatment.
Microscopic examination of the retinas at autopsy showed that the treated eyes had healthy photoreceptor layers five to seven cells thick, while the untreated eyes had an average thickness of just one cell. (Healthy rats have layers 10 to 12 cells thick.) None of the cells divided abnormally or grew into tumors, the team reports in today's issue of the journal Cloning and Stem Cells.
"It's important and pretty exciting work," said Lucian V. Del Priore, an expert in retinal cell transplants at Columbia University. A steady source of safe, laboratory-cultivated cells for retinal transplants would be a welcome advance, he said.
But Del Priore cautioned that the rat disease is not identical to macular degeneration (no animal disease is), and it remains uncertain how long the new cells will survive and work. Immune-system responses, while generally suppressed inside the eye, can eventually lead to rejection, he said.
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