Resources, support, and reality check for macular degenerates

A look at mdsupport.org http://www.mdsupport.org

A person newly diagnosed with macular degeneration often leaves the office of an eye doctor after being told “You’re doing to lose your central vision over the next few years”. Maybe the doctor has explained the situation but the patient is unfamiliar with the terminology used, as well as in shock. Maybe a pamphlet “Explaining macular degeneration” is in the patient’s hands, maybe not. Such a hopeless, under-informed, awkward launch into a period of profound life change is the situation addressed by the mdSupport foundation, hosted at http: http://www.mdsupport.org.

“Macular degeneration” is a condition of the eye, literally a loss of cells in the part of the eye called the macula where fine detail of vision is accomplished. I will not try to define all the medical terms as there is an excellent audio on the mdsupport website. The condition has many causes and generally encompasses a family of diseases, often but not always associated with aging, and structural differences such as my condition, high myopia (-16, long eyeball). The common factor is the end result, degrees of loss of ability to read, drive, and do many other daily activities without some kind of assistance. And these results lead to a position in society that, for some people, is a declaration of legal blindness but for many is a perpetual state of difference from both the fully sighted and the fully blind, a state likely to be invisible to other people if we do not notify them. Literally, millions of people are passing through this stage of vision, soon to be joined by crowds of baby boomers.

mdsupport.org, the website, is a fertile encyclopedia for reading about the medical and social aspects of macular degeneration. But this website is no Wikipedia but rather meticulously edited by its founder, a macular degenerate himself and music teacher, Dan Roberts with the help of many medical authorities, especially a low vision specialist “Dr. Windy”. And the website also stands as a portal to other organizations dealing with patient, physician, and rehab sides of md.

Here’s an example of how I used mdsupport.org a few years ago as an authoritative reference. I needed a bright light for certain kinds of reading but was leery of those big ads about UV bulbs flooding your living area, unsatisfied with halogen lamps I was getting at Kmart, and physically assaulted by overhead lighting. mdSupport offers a remarkable article “Artificial Lighting and the Blue Light Hazard” explaining light in physics terms, the physiological effects of light on the retina, the cyclic recovery and damage of bright light, and the, and the state of scientific debate and uncertainty. I chose an elegant, but expensive desk lamp, Lazlight, that appeared safe from the information given in the article. I use it sparingly, for writing checks using my template or for trying to read phone books or other fine detail without using magnifiers. Sometimes the lamp and my vacillating state of vision are sufficient to do the job, but less often than when I originally purchased the lamp. One might ask: well, at least in the U.S., aren’t there protections against selling lamps that might damage our retinas” but the answer is “apparently not, based on both the state of scientific knowledge and the simple lack of regulatory oversight of the lighting industry”. To sum up this anecdote, mdsupport provided significant guidance toward a lighting purchase that satisfied my needs at the time, left me comfortable about safety, and illuminated by understanding of the issues of lighting fixtures and retinal responses.

I’ve also known mdsupport through its mailing list discussion among macular degenerates of all ages and sorts and locations. I was active in the list as far back as 1998, the time of my cataract surgery, but left when employment and better vision and other interests lured me away. I recently returned to reading mdList on my icon and Director Dan and Dr. Wendy were still wisely guiding list members on topics ranging from stem cells to external computer monitors. One of my problems with all mailing list is the amount of traffic that comes from polite notes of “thanks” to personal prayers that could be transmitted by private email rather than an entire list. But this systemic personal characteristic of mailing list members does not deter me from now staying subscribed and coming out of lurking soon. A typical exchange on the mailing list is a forwarded article snagged from a newspaper or Google alert about a treatment for some cause of md with a response from the founder and his advisors about the efficacy and reality of the treatment, “yes, but it doesn’t do this”, or “it has not yet been proven” or “another treatment will be available soon” with very interesting comparisons of the cost and availability of the treatment across international and the U.S. health care systems.

Dan Roberts has been one of my heroes of vision loss for nearing a decade, a mythic figure of knowledge, compassion, and commitment. mdsupport.org is a bequest in my will and a good place to memorialize the few friends who have died. plan to follow up soon with a recap of work Dan reports on about better models for rehabilitation for low vision patients.

In the context of this blog, the technology often discussed is complementary to our array of software and hardware gadgets. A comforting aspect of the mdList is the mixture of individuals beginning transition to vision loss gaining answers for their questions and learning how to manage their own eye care, the reassurance of seemingly normal life from people with juvenile origin forms of md, and normally sighted eye care professionals offering support, advice, and information.

Permitting myself a little rant here I’ve never understood “why sighted people need such bright light”. In the context of my 5 tenets of living with vision loss (previous posting), bright overhead light drains my energy and incapacitates my retained eyesight. A few times recently I’ve attended meetings in hotel conference rooms and government office buildings where the fluorescent lighting was so intense I felt myself shrinking away in protective reaction, sneaking over to try to dim the room lights, and wondering if these sighted beings are aware of the work their retinas are doing to process and recover from the bright lights, and possibly, accruing tiny amounts of damage that will affect them in a decade or two. Many sighted acquaintances are surprised that more artificial light is definitely not better for my myopic degeneration, but that I prefer whatever natural light is available, even down to just cracks of light coming through closed drapes. My explanation is basically “contrast, contrast, contrast” when it comes to computer screen lighting and how overhead and bright lights wash out the contrast. And a darkened room can be easier to navigate because I have developed compensating movements and confidence in my slower gait and fumbling around. Do we lighting-averse partially sighted and blind people contribute less to problems of energy conservation and climate change? I’d love to hear explanations of why fully sighted people need so much light to function,

Off the topic of mdSupport into the podosphere, “macular degeneration” is a popular topic across health news, science reports, and government agency announcements. Renowned medical journals, e.g. from National Library of Medicine, offer summary podcasts. Nature magazine and a variety of public science sites, many from U.K., report on stem cell advances, prosthetic eyes, and brain functions. An ophthalmology continuing education podcast covers in-depth treatments. And many physicians, health advisers, and vitamin hucksters offer 1 minute messages. Just like “It must be true, I read it on the Internet”, “I heard it on a podcast” is a caution about validity of the information to follow, but many of the podcasts we cite are highly authoritative. Linked below is a list of podcasts we have retrieved, but not yet listened to all, over the past 2 years, mainly using an alert from Podzinger Audio Search on “macular degeneration”. Use this web page to listen to mp3 files however your browser invokes an audio player or save the files and listen in your favorite player.

References:

mdsupport.org
http://www.mdsupport.org

Founding Director Dan Roberts
http://www.mdsupport.org/dan.html

Eyesight Podcast Library on “macular degeneration”
http://www.apodder.org/EyesightPodcasts/md.html

Everyzinger (Podzinger) Audio search
http://www.podzinger.com

Interview with Dan Roberts on his book “The first year of macular degeneration”
(link moved, copy to be posted)

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4 Responses to “Resources, support, and reality check for macular degenerates”

  1. Need a second medical opinion? Try the Controversy Discovery Engine. « As Your World Changes Says:

    […] and distributions of this condition, as I have only met other MMD people on the more comprehensive Macular Degeneration mdsupport.org earlier post. There’s always a sliver of hope for improvement, possibly from research driven out of the […]

  2. slger Says:

    Here’s a posting from a blind blogger on the Charles Bonnet Syndrome.

    “Reading in the Dark” Nov. 29 2008
    http://kestrell.livejournal.com/

    and Dan Robert’s writeup from the MDsupport library:

    http://www.mdsupport.org/library/chbonnet.html

    The blogger mentions that this condition is unlikely to be addressed by eyesight specialists so MD patients often worry unnecessarily.

    For the record, my hallucinations come usually just before sleep in the form of faces that emerge from haze, morph into other features, then disappear. The faces are not recognizable from my past or present but rather resemble Grecian statues in their molded features. I haven’t yet worked up the courage to open a discussion.

    This blogger is a great source of information on reading matters, assistive technology, and communication practices.

  3. Resilience: Bouncing Back from Vision Loss « As Your World Changes Says:

    […] Resources, support, and reality check for macular degenerates […]

  4. Living Visually Impaired in Prescott Arizona — The 2013 Story | As Your World Changes Says:

    […] needs a coordinated disability services Resources for Macular Degenerates — MDSupport.ort What’s a print-disabled reader to do? […]

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