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THE MACULAR
DEGENERATION COMMUNITY

David


 

Name
David

Born
April 1957

Home
Indiana

Diagnosis
Early onset AMD, previously wet, now dry

Eyes Affected
Both

Eye Color
Light blue

Age at Diagnosis
47

Acuity
20/25 Left Eye (corrected); 20/30 Right Eye (corrected) - Snellen chart - fluctuates slightly each exam.

Treatment
Photodynamic Therapy (PDT) in April 2005, after diagnosis of Wet AMD (both eyes, "severe" according to friend's notes). No other medical treatments since, as I have been very fortunate to remain Dry. Prior to diagnosis of Wet in early April 2005, I had been diagnosed as Dry AMD ("very early stages") in Nov. 2004 and Ophthalmologist recommended I come back in a year, to have it checked again. However, noticed increasing distortions so saw another Dr. (second opinion) whereupon: "Wet" diagnosis.

Since April 2005, shortly after PDT treatment, I have been taking Chinese herbal medicine purported to increase micro-circulation in the blood vessels at back of the eye, and stop retinal bleeding. Also a combination of herbs (17) designed to do good things for the eyes, liver, and other systems. Tien Chi ginseng, Yunnan Paiyao (7 ingredients, including San Qi ginseng and other Chinese herbs), and a "Macular Powder" (17 ingredients) are what I am taking, in hopes of preventing a recurrence of retinal bleeding.

In addition, I am taking a great many other supplements including:

Life Extension Foundation's multivitamin/mineral "Mix" (58 ingredients, approx.)

Life Extension's "Super Zeaxanthin" (w/ Lutein and meso-zeaxanthin also) - 4 pills a day

Life Extension's "Super Omega-3 EPA/DHA" (w/ Sesame Lignans, Olive Fruit/oil extract, and concentrated fish oil) CoQ10 (Life Ext. "Super Bioactive Ubiquinol" type) N-Acetyl Cysteine, 600 mg (from local health food store) New Chapter's "Broccolive Plus"

Glutatine powder (1 teaspoonful, each morning w/ water) all of the AREDS vitamins (individual supplements; not a formula)

Blueberry syrup concentrate (Tree of Life brand)

Acetyl L-Carnitine (when I can afford it... probably will discontinue soon, due to finances)

Taurine

Garlic supplement (Garlinase Fresh, good for the heart also) probiotic formula (Suprema Dophilus, 7 strain + FOS + colostrum)

Alpha Lipoic Acid (Life Extension's "R" type, softgel) 300 mg per day

Grape Seed Extract (local health food store) - 300 mg per day, when I can afford it.

New Chapter's Turmeric (anti-inflammatory) "supercritical extract"

New Chapter's Vitamin C (Whole Food complex) w/ Ginger etc.

FloraGlo's "Lutein Plus" - 2 per day, with meals w/ fat in them

Carlson's "Fish Oil" (Orange Flavored softgels, 2 twice a day, along with the Life Ext. EPA/DHA product listed above)

Udo's "3-6-9 Oil Blend" (flax oil, coconut oil, evening primrose, etc.) High lignan variety, Udo's Choice B-12 sublingual vitamin clove of raw garlic (with food) most days.

Prognosis or Current State of Vision
Prognosis: Dr's can't give me any prognosis, they say. AMD is unpredictable and varies according to the individual, etc.

Current state of vision: Blind spot in Right eye, near very center of vision. Lots of distortion too. However I can read the Snellen Chart, with difficulty (looing out of side of my eye), so my Right Eye is measured at 20/25 or 20/30 (corrected). Varies slightly with each exam. Left Eye is my "good eye". Though it has areas of distortion, they are less severe than the right eye. I depend on it for reading. It usually measures 20/20 or 20/25+ (corrected) and I don't have to roll my eye in order to read the chart.

I feel enormously blessed, to have the vision that I do have!

Family History
Mother has Dry AMD, more advanced than mine.

Impact on My Life
Very hard to read small print, anymore. I work at an office job (full-time) and have to work from printouts that have small'ish print. Have to use a magnifying glass often, throughout the day, to manage. Some days, my vision is better than others and I can use the magnifying glass less. Also have to use the glass when paying my bills. I live alone, so I have a lot of anxiety about what would happen if condition worsens. (Which it has; blind spot in Right Eye developed about 8 months ago. Seems to be worsening, very slowly.)

I've read quite a bit about the condition, including Dan Robert's excellent book. I have much more to learn. Sometimes, however, I want to put the condition out of my mind. Try to forget that I have it. Some members of my family think that I dwell on it too much (obsess about it, etc.) and nearly all of them think I spend too much money on supplements to combat it. I'm sure it comes to at least $600 or $700 per month, for all of them.

I am unable to save for retirement anymore (17 years away) and have cut all other "luxuries", such as cable TV, except for the eye supplements.

Positive Effects
I've learned to appreciate tremendously the eyesight that I do have. Reading about how bad off others have it (whose disease has progressed farther than mine), it seems like such a heart-rending loss.

I have a great deal to learn yet, about finding positive things about this disease. Frankly it seems a devastating condition. It may be a long time before I learn how to make "lemonade" out of it, but my mind is open. Reading some of the great entries in MD List e-mail group, is helping me form the foundation for future coping. (As it seems very likely my condition will worsen.)

Adaptations
Use of magnifying glass, when working off reports at work.

Use of magnifying glass, when paying bills - or doing a lot of reading (or reading items that are faint, skinny print, or small print).

Wearing blue blocking sunglasses (amber color, now realizing I need to upgrade it to orange or gold tint)

All my windows at home are covered in very thick paper, to block sunlight.

Sun barriers erected at work (after difficulties w/ my boss; requiring letter from doctor) to protect myself from direct sunlight, while working.

Employment
Highly competitive, high stress work environment. I work full-time at office job. Boss unsympathetic to my condition (utterly).

If my AMD progresses, very doubtful that I will be accommodated willingly - or that I will remain in my present job for long.

More About Me
I love old movies and enjoy reading various reviews, and philosophising myself about what makes them so special (individually, and collectively - the better ones). Have written several essays, loosely written descriptions of "What I Like Most in Old Movies/TV shows". In a nutshell, I appreciate movies that are life-affirming, positive, etc. that have depth to them (good psychological intimacy).

I enjoy public radio programs also. Especially "A Prairie Home Companion" and Garrison Keillor's stories.

I used to play a great deal of chess, competively, but have since quit all that. Watching and talking about old movies have completely eclipsed that interest. I'm very fortunate, to have a few internet friends that help me occasionally acquire a rare gem (old movie) to add to my collection.

I used to subscribe to "Films of the Golden Age" and "Classic Images" magazines, and learned a lot about old films, and actresses and actors that way.



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