Book Review

Dr. Lylas Mogk has a very special reason to be concerned about Age Related Macular Degeneration (ARMD) in addition to the fact that she is a practicing ophthalmologist.  When her adored father was diagnosed at age 79 with ARMD she became acutely aware of his need for services which are not readily available for many of the 1.5 million Americans whose daily lives are profoundly affected by this common condition.  In 1997 Dr. Mogk opened the Visual Rehabilitation and Research Center of Michigan which provides a comprehensive program for Low Vision Living.  This book shares her experiences with patients and their families.

            Why should PXE-affected persons care about ARMD?  The answer is that both disorders, while springing from distinct causes, appear to impact daily life identically.  And treatments developed for ARMD, which affects huge numbers of people, hold promise for the relatively few who are diagnosed with PXE.

            Part I of the book describes ARMD in clear detail.  Medical language is used as necessary and each term is explained.  Indeed, the information provided here is the most easily understood of any previously encountered by this reviewer.  We are told that while our genes play a major role in ARMD, research is needed to determine exact causes.  More importantly, we learn that other factors which we can control also are involved.  Smoking, including second-hand smoke, is a danger to be avoided.  Sunglasses with blue blockers worn from an early age provide valuable protection.  And as might be expected, we are admonished to eat a balanced low-fat diet high in antioxidants.  And yes again, we are encouraged to consume a standard daily dose of vitamins and minerals.  PXEers will recognize this advice and will appreciate the information on food choices accompanied by recipes which incorporate them.

            Chapter 2 of Part I provides excellent information about current treatment options, including use of the Amsler Grid, laser, and new forms such as photodynamic therapy.  The laser trade-off is explained and help is given for the decision to accept or avoid laser treatment.  Ongoing research is discussed, including surgical options, Thalidomide, and transplants.  PXEers will find this material to be exceedingly valuable.  Readers who have yet to experience eye involvement will be better armed when difficult decisions must be made.

            Part II, Experiencing ARMD, will resonate with all who experience vision loss.  Individuals share their reactions to macular degeneration.  Shock, loss, grief, rage, fear, shame and anger, normal initial responses, give way over time to coping strategies which include exploration, hope, determination, and courage.  A well-developed sense of humor and adventure, coupled with a forthright approach helps.  In the end we must not become defined by our loss but as the healthy fully developed individuals we have always been.  The personal stories shared by Dr. Mogk's patients put a  human face on ARMD and help us to understand and appreciate our own responses and feelings.  Included is an excellent discussion of depression, a serious potential added complication when vision loss forces significant life changes.

            Part III, Visual Rehabilitation, guides practical coping – or how to make the most of peripheral vision for reading and daily activities.  It’s about not giving up on the full life you were living before vision loss interfered.  It's an excellent section to read with those close to you who want to help and whose help you need.  If you have PXE, but have yet to experience eye complications, this is highly valuable material to share now with those who will help you.  PXEers who read this will be better prepared for vision loss that is almost certain to come.

            A first task when vision is lost is to get involved in a visual rehabilitation program with the help of your doctor.  Organizations are listed which can be contacted for help.  If there is no program in your area this section includes a home version of Dr. Mogk's Low Vision Living Program.  The program includes five chapters: reading with low vision, lighting, magnifiers, adapting your home, and interacting with the community.  The entire program will take an hour or so a day for two to four weeks, and it requires assistance.  This part should be read and followed with the family member, friend or associate willing to assist you.  This difficult period brings home all too clearly the need for an extra dose of courage and nerve.  And never forget that it also calls for accepting help graciously from those who truly want to give it.  Dr. Mogk reports that while ARMD does not often require the use of the white cane signifying blindness, its use seems to attract remarkable assistance from strangers as a demonstration that many people are kind and eager to assist.

            Part IV, Appendices, is very important because it provides information about significant organizations such as the American Foundation for the Blind, including mailing addresses, telephone numbers and website addresses.  Those who have computer access will find much valuable material on such websites.  This section also includes sources for low vision reading workbooks, large print books, magazines and audiotapes, and radio services such as the reading of the daily newspaper and talk radio for ARMD-affected persons.  Also included are product catalog retailers, computers and software sources.  There are sections on transportation, visual driving requirements and tax benefits.

            This outstanding resource is directed to the lay person and includes a remarkable amount and range of information.  Written in easy to understand human terms, it should be required reading for PXEers, their families, friends and doctors. Dr. Mogk appreciates the needs of her patients, and she evidences a compassion we hope one day will be the standard for the medical profession.  Would that all physicians might communicate so clearly.  Please read this book.  It is wonderfully helpful for those who must cope with the impact of PXE.