GENERAL INTEREST CONTINUED

Posted by Kathy on October 13, 1998 at 11:46:19:

Clinical Trials on Macular Degeneration are due to start in November of 1998 headed by Dr. Carl Regillo. They are now awaiting final FDA approval. These trials are being done at Will's Eye Hospital in Philadelphia, PA. Please submit doctor's medical report to Ms. Elizabeth Affel, Will's Eye Hospital, Visual Physiology Department, 900 Walnut Street, Phila., PA l9l07. Patient would not be allowed surgery for one year following the procedure. The procedure is called photodynamics and consists of an injection in the eye followed by low laser treatment. Hope this is of help to someone.

Should dad move to new home?

Posted by Anne Westerman on October 16, 1998 at 22:43:48:

My dad has recently been advised that his MD will advance to significant impairment soon. He is considering moving from his rather large home which he has occupied for the last 20 years. He wonders if that would be a wise move. He lives with my stepmother and really enjoys spending time in his garden. His concern is that he will no longer be able to keep up with the yard work and my stepmother is not particularly interested in taking over the tasks. Should he move to a retirement community where he would have fewer house and garden chores requiring sight or stay in his familiar environment and hire someone to help with those chores?? I would appreciate any advice and will pass it along to him. Thanks.

Posted by Dave on October 17, 1998 at 22:10:25: In Reply to: Should dad move to new home? posted by Anne Westerman on October 16, 1998 at 22:43:48:

Hi Anne,
I am 59 years old and my wife and I made that decision about 4-1/2 years ago. At the time we moved, I had only lost about 10% of my central vision in one eye. Within a year of moving from a 5 bedroom home to a 3 bedroom condo, I had a heart attack, heart surgery and lost all of my central vision in my left eye due to laser surgery.

We loved our home but found that it was getting difficult to find someone that would take care of the yardwork while we enjoyed our 2 bedroom condo on the lake. We sold both places and moved into a 3 bedroom condo on Lake Erie and have never been sorry for a minute. We now live in every room of our home and it is all on one floor.

If your Dad and step-mother can live on their own, I would definitely recommend a condominium that has people their own age. This gives you a chance to make friends with people that share your interests and your station in life.

Now that I only have 15% of my central vision left in one eye, I don't have to worry about how the yardwork or the snow removal is going to be taken care of. It is done for me and I still can walk outside and enjoy the landscaping and putter in flower beds if I want to.

Your Dad is probably doing what I did. He is looking down the road and trying to figure out how he will be able to get the most out of life after he loses his central vision. That is the best way to cope with this disease. This will enable him to have a positive outlook on life and to continue to function around the vision impairment.

Above all, tell him to remeber that - "THERE IS LIFE AFTER MACULAR DEGENERATION".

Hope this helps all of you in your time of difficult decision.

Dave Pearce

Flickering lights & flashes

Posted by Nathalie on October 19, 1998 at 22:43:52:

My mother (78 active & in good health) has wet MD in her right eye & dry in the left. It has stopped her in her tracks because the still good sight in her left (dry) eye is made almost useless by constant flickering lights. They appeared the day after she had an angiogram (very bright lights) and have been going on for 4 months. Ophthalmologists don't seem to take this problem very seriously or know the cause, beyond saying it may be the bad eye influencing the other. Has anyone experienced this? How long could it take to improve? It makes her life impossible, added to the wet macular in the other eye.

Posted by Jane on October 20, 1998 at 23:57:02: In Reply to: flickering lights & flashes posted by Nathalie on October 19, 1998 at 22:43:52:

very bright lights have affected my eyes also. i have stargardt's (dry md). after some of my early retina exams i felt like i never got all of my eyesight back. i also had an experience looking through a telescope. i was looking at the moon with a shield covering most of the lens and it accidently moved. that light was extremly bright. that is the night my "flashing" and blind spot started. i later found out i had md. i am now very careful. i even wear sunglasses when i visit the dentist.

i have talked to my docters about the bright light problem and some have said it shouldn't matter and the effect is temporary. others have said the lights could have permenently affected me. maybe it just accelerated the process of my vision loss.

if your mother says the bright lights caused her flashing to start she knows best, they are her eyes. she should be careful from now on. hopefully the flashing will become less of a bother to her. i have gotten used to mine. (i have had flashing for almost 10 years.) it seems to be worse when my eyes are tired. also, the flashing is only in my blind spot . is your mom's flashing area in her entire field of vision or just in the area of vision loss ?

Jane

Posted by dan roberts on November 05, 1998 at 22:41:30: In Reply to: flickering lights & flashes posted by Nathalie on October 19, 1998 at 22:43:52:

Dear Nathalie,
Flickering lights and flashes are a common symptom of retinal degeneration, and they are thought to be a neurological reaction. They are indicative of retinal separation, and should be taken seriously. Unfortunately, the doctor may not act as if it is that important, due to your mother's age and the fact that there is really no effective treatment for her. He should, however, be honest enough with you to tell you this. If you would like more information or just want to discuss this further, please feel free to write to me personally at this address.

Best regards to you and your mother,
Dan Roberts, Owner
MDList & Chat Channel

Radiation treatment for macular degeneration

Posted by Alicia on January 26, 1999 at 16:25:50:

Does anyone know of this treatment? My father, who suffers from this, heard a report on television about this new treatment. If you have further info for me, please respond.

Posted by James on January 26, 1999 at 19:00:45:

Check the archives of the Chicago Tribune on its web site for an article on a presentation done at a conference held in Chicago in Nov. or Dec. 1998. The main thrust was that low dosage radiation of the type used for cancer in the eyes was proving successful.

Support Group Info. Needed

Posted by Kathryn Copak on August 18, 1998 at 23:07:53:

I am a Parish Nurse working with several individuals of our church who are attempting to live and deal with the challenges and losses of Macular Degeneration. They would like to start a support group within the community to help themselves and others deal with this disease. I would appreciate any information available on how to get started or your experiences in group sharing of this nature. Thanks for your input!

Posted by Bill Halamicek on August 19, 1998 at 21:19:51: In Reply to: Support Group Info. Needed posted by Kathryn Copak on August 18, 1998 at 23:07:53:

I am a volunteer and my wife has AMD. Our small support group in Edmond, Oklahoma with twenty members meets in a local church. We always have coffee and goodies. Our leader is a nurse who has AMD. I drive at least 5 members who have AMD and can't drive to the meetings. We meet once a month. We have a guest speaker every meeting : Fireman, First Aid, Ophthalmologist, homecare, a blind cook, sight aids, Library for the blind, etc. Our agenda is 9:00 A M Prayer followed by roll call, if we have a new member we introduce them and ask them to tell about themselves. If a member has something new, we invite them to tell us.I use the internet to find out news and research on AMD. Another member does the same and we read it or we record it on tape and play it on a boom box. The boom box is the best because most of our members can't hear very well, and some of the members can't read regular print. If some of the members want a copy of the article, I make a copy and hand it out at the next meeting. It is imperative that the members talk about their problems, because some other member may have a solution. Our speaker has the floor from 11:00AM to noon. Most bring a lunch and everyone has a good time eating and visiting.

Posted by Dan on August 23, 1998 at 11:42:58: In Reply to: Support Group Info. Needed posted by Kathryn Copak on August 18, 1998 at 23:07:53:

Dear Kathryn,
You may want to contact the Foundation Fighting Blindness for help in starting an affiliate support group in your area. I belong to one in Kansas City, and there are about 1200 members from a 2-state area. If you would like to e-mail me privately and tell me your location, I can tell you if there are any affiliates nearby.

To contact the FFB, call (800) 683-5555. Good luck on this worthwhile endeavor!

Dan Roberts, Owner
MDList

Oklahoma City Dr. Can Stabilize MD

Posted by Thomas L. Furlong on December 06, 1998 at 11:28:18:

My mom is one of hundreds of people who've had macular degeneration stabilized by making approximately 500 laser burns "around" the macula. This relieves the pressure and stops the fluid infiltration. It takes about 15 minutes to do and is being performed in Oklahoma City by Dr. James B. Wise. There is nothing new about this surgery, it's currently used for diabetes patients for another purpose, but when used to treat macular degeneration, it has had remarkable results. I'm just sick about the number of people who lose their sight daily who could've been helped like my mother, Silvia Mae Furlong, was helped. She wouldn't be living the life she's living today if it weren't for Dr. Wise. For your sake, or for a relative, please investigate this procedure. Dr. Wise is practicing at Integris Health Center, formerly Baptist Hospital in Oklahoma City, the most reknown heart center in the world. Just as one goes to Houston for cancer treatment, Oklahoma City is known for heart healing. Dr. Wise's procedure is done in the office and is completely painless and takes about a quarter hour and is covered by any plan covering laser eye surgery for other purposes.

I hope just one person is helped by this message.

Thomas L. Furlong
1301 N.W. 19th
Oklahoma City, Oklahoma
73106
405 525 9333

Posted by Dan Roberts on December 08, 1998 at 11:00:50: In Reply to: OKC Dr. Can Stabilize MD posted by Thomas L. Furlong on December 06, 1998 at 11:28:18:

Laser coagulation therapy is a common practice of virtually every ophthalmologist all over the world, and it is currently the only treatment for wet MD. (The procedure is not effective for the dry form.) A word of caution: lasering destroys healthy retinal tissue as it seals the leaking blood vessels, and should be used discriminately for that reason. I have never before heard of anyone receiving 500 laser treatments, and I wonder how this lady could have any useable vision left at all as a result. Before agreeing to use of the laser, it is always a good idea to get second or third opinions, as not all doctors will agree that this is always the best approach.

Posted by Thomas L. Furlong on December 08, 1998 at 15:02:22: In Reply to: Dr.Dan you're confused posted by Thomas L. Furlong on December 08, 1998 at 14:57:51:

Re: Dr. Dan you're confused

You didn't read my message thoroughly about the work Dr. Wise is doing. It's NOT coagulation laser surgery! I was there holding my mother's head steady and watching the inside of the eye on a monitor. The laser burns are "AROUND" the macular. It relieves the pressure and so the fluid infiltration stops. It's a donut pattern and there were 550 miniscule burns in my mother's case. I'm familiar with the lunacy of burning the macula for coagulative purposes, but that only destroys eyesight. THIS IS NOT THE PRODECURE I'VE OUTLINED!!!! There are hundreds of patients who have had a successful stabilization of their problem.

Next time, please finish or read thoroughly before you furnish an opinion.

Thank you.

Posted by Dan Roberts on December 10, 1998 at 12:56:01: In Reply to: Dr.Dan you're confused posted by Thomas L. Furlong on December 08, 1998 at 14:57:51:

Dear Tom,
I apologize for misunderstanding you description of your mother's surgery. This is a new technique which I have not encountered, and I would be interested in hearing more about it. Is it relieving pressure from water or blood buildup beneath the retina? How is this pressure relieved by the laser (i.e. where does the fluid go?) Does it have any effect on the blood vessels themselves or in any way stop neovascularization?

If you do not have the answers to these questions, could you tell me how to contact the doctor so that I may pass this information along to interested people on the MDList?

Thank you for bringing this to our attention, and I hope to hear more from you, either privately or through this bulletin board.

By the way, please avoid using upper case letters and exclamation points when writing to low-vision people, since it sometimes confuses our screen readers.

Best regards,
Dan (Not a doctor, just a guy who is trying to get through this like everyone else.)

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