GENERAL INTEREST

Posted by Estela on April 21, 1998 at 16:05:25:

I've just been diagnosed with dry age-related MD. I love to read, and quilt by hand, both requiring closely focused central vision. Will using your eyes in close work like this accelerate the degeneration? Is it ok to read and sew while I still can, or should I give this up in order to prolong the health of the macula? Thanks. Hope someone has answers.

Posted by Dave on April 21, 1998 at 17:12:48: In Reply to: Reading and Sewing posted by Estela on April 21, 1998 at 16:05:25:

Hi,
My doctors have advised me that there is nothing related to reading or close detail work that will affect the progression of MD. I have received several type of magnifiers and new glasses that make it easier fo me to continue many of my normal activities that require the central vision. Don't give up activities that can still be accomplished with help from magnifiers. I only have about 15% of my central vision in my good eye - and the other eye has no central vision. I still stay active on my computer with the aid of a magnification software (ZoomText) and my glasses and magnifying devices. The more active you remain, the easier it is to adapt to this disease. Learn to use your peripheral vision where you used to use your central vision. It really works.

Good luck,
Dave

Reading and progress of dry MD

Posted by Woody on June 16, 1998 at 01:24:16:

I am a 53 year old with dry MD (mild at this time). As an attorney, I am reading constantly and want to know if anyone has any information regarding links between the progress of dry MD and intense use of the eyes such as constant reading.

I look forward to hearing from anyone who might have information on this issue.

Thanks.

Posted by Dan Roberts on June 18, 1998 at 10:05:47: In Reply to: reading and progress of dry MD posted by Woody on June 16, 1998 at 01:24:16:

Dear Woody,
There is no evidence that over-using your eyes will complicate dry AMD. Most people report that their eyes tire more easily than normal, but that is simply from the strain of reading through and around the degenerated cells. Read on, my friend, and enjoy.

Dan
Owner, MDList
Webmaster, MD Support

Posted by Dave on June 16, 1998 at 10:58:45: In Reply to: reading and progress of dry MD posted by Woody on June 16, 1998 at 01:24:16:

Hi Woody,
I am 58 years old and was diagnosed with MD 13 years ago. I am an engineer and constantly worked with many construction documents, drawings, specifications and contracts. At least four doctors have advised me over the years that reading will NOT cause the MD to progress any more than avoiding reading. I was fine until this past January when my good eye developed fluid behind the retina. Now I must use magnification devices and software to read. Even after 5 laser procedures in my left eye destroyed the central vision in that eye, I still was able to read with very little difficulty.

I still average a book a week (large print books) and am able to read the large print Reader's Digest. I would really be lost without my reading.

I would suggest that you get in touch with a low vision clinic near you and determine what there is that will help you to continue reading for work and pleasure. It will help you to continue to function normally, whatever that may be, with less stress.

Hope this helps. Above all, try to maintain a positive attitude and find out what is available for you before you get to the point that you need these devices. It has helped me to be prepared for the progressive steps of this miserable disease. As I have reached the inevitable steps that we all face, I have had the tools at hand to continue with a productive life.

Have you checked out my message on here for the MD Support site? Give us a try. We all have many of the same questions that you have and are willing to share our experiences and a lot more.

Good Luck,
Dave Pearce

My Dad

Posted by Jeff on April 22, 1998 at 08:21:52:

My Dad is 85 and apparently has had MD for a couple of years, with the only options provided to him being doom and gloom. Then I visited him last week and found out that he had pretty much given up hope of improving his life. I could not believe that with all of the new technology today that something had not improved over the last couple of years since he had been diagnosed. So I started searching the Web and it appears that there are many new treatments and high tech breakthroughs that might help him. However, he is retired and on a limited income. Most of his medical benefits come through Medicare. Does anyone know how he might go about obtaining a reading assistance device without it costing an arm and a leg? Any help that you could give me would be greatly appreciated. Thanks in advance for your help.

Posted by Dave on April 22, 1998 at 10:24:43: In Reply to: My Dad posted by Jeff on April 22, 1998 at 08:21:52:

Hi Jeff,
I can't speak with any degree of authority, but it may be possible for your father to receive some assistance from a Vision Center or Sight Center in your area. I am 58 years old and have received considerable assistance from the Ohio State Rehabilitation Commission. I would recommend that you contact the state agencies where you live or even the Social Security office. They may be able to put you in touch with another agency that can help you. The magnifiers really do help me. Try to encourage your father to try them.

Good Luck,
Dave

M.D. treatment??

Posted by Harry Hopkins on April 23, 1998 at 06:18:32:

This is the first time I have visited this BB and I am so moved by the good will and kindness shown. It is such a wonderful and beautiful feeling. My wife has the 'dry' M.D., and it has dragged a very outgoing person down to almost a recluse. It is so very heart breaking. After being treated very badly by the medical establishment in their off hand attitude regarding my trying to get information about my wife's condition (they told me there was no more they could do and there was no cure or help to improve her sight, except simple magnifying glasses) I decided to try and use the power of the Internet to get the information I know is 'out there'. As my wife and I live in the UK, treatment by therapists in the US would be difficult and so I am hoping to make contact with someone with knowledge of treatments, papers describing the method of applying micro current treatment, nutritional therapies, specialist glasses, any other visual aids, or ,in fact, any thing that would help.

Please, if anybody out there can help me I'll be so grateful.

Harry Hopkins

Posted by Dave on April 23, 1998 at 10:25:26: In Reply to: M.D. treatment?? posted by Harry Hopkins on April 23, 1998 at 06:18:32:

Hi Harry,
Even though I live here in the USA, I can appreciate your feelings of frustration with the treatment of the medical professionals. They make you feel like you should just go off and get a tin cup with some pencils and wait for your vision to fail completely. The three best sites that I have found for info regarding MD on a world wide basis are: This site-AMDF, FOCUS and BRIAN'S EYE. Give them a try and I think that you will be pleasantly surprised with the unusual amount of info that they will lead you to. Since I am going into the Bioptics program at Ohio State Univ., I am very enthused about the potential improvement that I have seen on the basis of my first evaluation examination. I was able to improve my vision in my good eye from 20/125 to 20/30. I can live with that and would be able to be mobile again. You may want to check out their site @ "OCUTECH".

Good luck to you and your wife,
Dave

Mom with AMD

Posted by Roz on May 28, 1998 at 16:30:36:

I have an 86 year old mother with wet AMD in both eyes.She has had laser surgery in both eyes. She is legally blind, and has had a very hard time accepting her condision, though she has been suffering for about 15 years. I can't really understand what she is going through, because of all the age-related illnesses most people would consider blindness about the last thing to afflict them. I find it very difficult to cope with this also, as she depends on me more and more, which is hard for her, because she has always been very independent and stubborn. I was wondering if there are any other children of elderly AMD sufferers who share my experience. It sure would be nice to know that I am not the only one who is frustrated and angry at my Mom and myself for feeling the way I do. Also , I am interested in finding out if there is any research being done to see if this is possibly an inherited disease. Every doctor and specialist I ask has a different answer.

Posted by Sherri on September 23, 1998 at 22:09:50: In Reply to: Mom with AMD posted by Roz on May 28, 1998 at 16:30:36:

I just found out tonight, my mother who is 72, has macular degeneration. I'm in shock, but not suprised. Her younger brother, in his late 60's, was diagnosed with Macular about 5 years ago. He is almost totally blind in both eyes. They had an aunt who was totally blind. All with the wet kind. Doctors say it is hereditary. Nothing has helped my uncle, not even surgery. He ordered the special eye glasses and by the time he got them, they didn't do any good. His sight went downhill fast. My mother's is expected to do the same. I don't know enough about it to tell you what do to. My mother is extremely depressed. She lives alone and feels as if life is over. I hope you have found some help for your mom. God bless you.

Eye surgery instead of laser treatment

Posted by Chris on June 15, 1998 at 10:27:39:

Hi,
I am writing again to update everyone about an eye surgery I had performed in St Louis on May 5. I posted a message a month and a half ago expressing my concern about losing my center of vision. That message got deleted when the system went down recently. I am a 29 year old female, and I am severely myopic and I have had two laser surgeries one above and one below my center of vision in the past 6 months. On May first, my retinal doctor told me a third laser surgery was out of the question because it would mean a permanent loss of my center of vision. My doctor asked how mobil I was and his office scheduled a trip to St Louis to a Dr. Matt Thomas at the Barnes Jewish Retinal Institute.

Dr. Thomas is extraordinary and people come from all over to see him. During my consultation he told me about his procedure of entering the eye, raising the retina with an air bubble and with tools he has designed he removed some of the scar tissue from my last laser surgeries, moved the blood vessels that had grown across my center of vision and lasered back other blood vessels on top of the scar tissue he could not remove. It has taken 1 month for my peripheral vision to come back and slowly over the last 2 weeks my center of vision is returning. I still have the two previous laser spots but they appear much smaller and have moved away from my center a bit. I am thoughly pleased. Of course I must keep a very close eye on my vision so any changes can be addressed with a laser surgery instead of a full blown 4 hour operation. Yes I was under for 4 hours because Dr Thomas found as he thought he would, that my severe nearsightedness has thinned the layers at the back of my eye. I'm a bit nervous when I think about the surgery so I don't know all the particulars or terminology. Maybe those interested can contact Dr Matt Thomas in St Louis. The medical facilities in this city are awesome, the arch isn't bad either. I did get to sight see the afternoon after the consulation. Dr Thomas also mentioned a procedure done at John Hopkins in Baltimore that could be an option for me in the future if I have additional problems. Since the major part of my eye is healthy it is possible to have an operation that would actually move my retina so that my central vision would focus on a clean part of the retina instead a degenerated portion or a laser scarred portion. Sorry this is so long. I had a lot to deal with lately and hope some of this info will help someone. The surgery was no joy but I think it has really helped me.

Sincerely,
Chris

Is there any treatment available in INDIA for this?

Posted by Uma on June 11, 1998 at 22:36:51:

Hi there,
My Mom is suffering from Macular Degeneration and she lives in India. Is there any treatment available in INDIA for this. If so, please mail me the info. If not, can you suggest a good place where I can find this info.

I live in Portland, Oregon. Can you suggest a good medical facility here that offers treatment for macular degeneration in and around Portland?

I would really appreciate your response. An excellent way to exchange info.

Thanks a lot,
Uma

Posted by Ravi on September 23, 1998 at 23:57:25: In Reply to: Re: Is there any treatment available in INDIA for this? posted by Ravi on September 23, 1998 at 23:54:00:

Two excellent centres in India are Sankara Nethralaya in Madras (Director: Dr. Badrinath) and L.V. Prasad Eye Institute in Hyderabad.

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