Fore~Sight

    The Newsletter of the Arizona council of the blind. inc           

   Vol 21     No. 2             www.azcb.org                     Fall  2005

 

From the President’s Desk

                                                By Dan Martinez, AzCB President

Assistive Technology Library Now Open to the Community

The Assistive Technology Library at the Arizona Center for the Blind and Visually Impaired is now open for use by members of the blind and visually impaired community.

The library is equipped with five state-of-the-art computer workstations. Each computer is equipped with magnification, screen reader and “Talking Typer” software and is Internet accessible. The library also has one ergonomic workstation to accommodate individuals with physical disabilities. 

Located at 3100 East Roosevelt in Phoenix, for over fifty years the Arizona Center for the Blind and Visually Impaired has been providing comprehensive rehabilitation instructional programs and social services for blind and visually impaired adults in Maricopa County.

If you or someone you know is blind or visually impaired and needs to use a computer, contact Adam Cruz for more information about this exciting, new Assistive Technology Library program. Adam can be reached Monday through Friday from 8:00am to 4:30pm at 602.273.7411 X 141 or acruz@acbvi.org <mailto:acruz@acbvi.org>.

This program was made possible by a grant from the Beaumont Foundation.
 

MACULAR DEGENERATION
By Dr.  Ikan C. Kleerly
 
For an extremely fast week in July, I was privileged to have been one of the almost 1700 persons in Las Vegas at the 44th Annual convention of the American Council of the Blind. Couple this crowd with a couple hundred guide dogs and you will start to get the picture.  Most of those people were in line in front of me every time I went to eat.  Meetings might start before 7am and still be going past midnight.  I was so busy that I didn’t even have time to lose my 
money with the slots.  CCLVI was also highly visible with meetings and social affairs.  I immediately realized that there was more than a generation gap when I heard the music at the social events.  (What happened to Guy Lombardo?) (As another parenth, this author was elected to the board of CCLVI for a four year term. That’s what I get for being outside the door at the wrong time!)
 
Speaking of generation gap, there are a lot of things we lose as we get older.  I won’t ask if you have taken inventory, but certainly the eyes have it.   This condition is called Macular Degeneration. (But please do not refer to folks as “degenerates”).
 
Macular degeneration is most often related to aging.  There is a form of juvenile degeneration also.  This will not be addressed at this time.  Persons after the age of 50 begin to notice some changes in their eyesight.  There appears to be a heredity factor involved therefore it may run in the family.  
 
The first noticeable effects are spots that appear.  These are referred to as “drusen”.  
 
Since the eye is like a camera, with the retina, a thin layer of cells at the rear of the eyeball, being like the film of the camera.  The macula is the area of greatest focus.  When spots or drusen appear, it may not seriously affect the vision.  It is more annoying than anything.  Only a small percentage of people with drusen develop severe macular degeneration.  Age Related Macular Degeneration (AMD) generally develops in one eye than later may affect the other.   A person can check for AMD with the Amsler Grid.  This is a grid of 
white lines about 1/8” on a black background.  If the person has AMD the lines are not parallel.  Sometimes an ophthalmologist or optometrist may have this available free for the asking.  
 
One of the most noticeable effects is with reading or close up vision.  
Distance vision is generally less noticeable in the beginning stage.  Distance vision however, may deem like edges of a building are not perpendicular or that telephone poles are bent.  There may be a noticeable difference in colors or sizes as seen by each eye.  If any of these symptoms are observed, it is imperative to see an ophthalmologist for a diagnosis.  Remember, an optometrist will merely sell you a new pair of glasses.  He is not expert in the eye 
conditions. 
 
There are three types of AMD, wet, dry and pigment epithelial detachment (PED).  Only the ophthalmologist can determine which type is present.  It is recommended that you be informed which type.  It is also possible to have one type in one eye and the other in the other eye.  The dry occurs in 85 to 90% of the cases while wet type is about 10% and PED only 5%. 
 
In the dry form, the macula thins out and actually stops working.  Whereas there is no medical treatment generally prescribed to “cure”  AMD, glasses may help for reading and another pair for telescopic long distance.  Persons are also taught how to use their peripheral vision to greater advantage.  The patient also should be aware that the dry form can change to the wet.  This is another justification for monitoring the condition with the Amsler grid.  The 
wet type causes more damage than the dry type. 
 
Recently there has been some research in the implanting of a telescopic lens in the eye which focuses on a healthy portion of the retina and gives promise for improved vision.  
 
In the wet type, abnormal blood vessels grow under the retina and cause it to lift up away from the choroids layer like roots under the sidewalk.  They leak fluid and need to be repaired with laser treatment.  A fluorescein angiography may be recommended for the wet type.  With this procedure a dye is injected into a vein in the arm and a special camera takes a series of pictures of the retina of the eye.  These are kept to observe any changes in future tests of the eye by this procedure. 
 
What can one do to prevent AMD?  First, choose your genetic makeup before birth. Since that is impossible at this time, Prevention and proper care will help slow the process.   Zinc has been a recommendation as have dietary supplements that contain carotene. Recent research establishes that smoking and use of alcohol promotes more rapid deterioration of the cells.  Persons who 
have quit these substances have shown a decrease in the progression of the condition.  Many foods such as carrots and green vegetables contain the ingredients for eye saving diet.  I do not advise my patients to chew on a garbage can to get their zinc.  Beside that, most of the containers are plastic anyway!
 
Next issue Dr. Ikan C. Kleerly will address “Black Eyes” since his wife found out where he was when he was not in those meetings!
 

Phoenix Sky Harbor International Airport Officially Opens Second Pet Park

 

Phoenix, Arizona -- Passengers traveling with pets through Phoenix Sky Harbor International Airport now have another place to give them a rest and water break. The “Paw Pad” just west of Terminal 3 is officially open to the public.

 

This is the second such pet park at the airport. The first, next to Terminal 4, is called the “Bone Yard” and was so popular that another one was requested for those using Terminal 3. The Paw Pad is a fenced area for dogs to stretch their legs after a long flight. It offers water spigots and bowls, paw shaped
decorations, “Mutt mitts” for cleaning up after the pet and of course a red fire hydrant.

 

The airport held a grand opening celebration with Phoenix Police and federal officials. Phoenix Vice Mayor Michael Johnson lead the ceremonies and said, “What is great about both pet parks is that they are used not only by the jet-set pet but also by the “working dogs” of the airport such as the TSA explosive
detection canines.”
 

The pet parks also make it easy for passengers to travel with service animals since they are accessible to those with disabilities. Phoenix Sky Harbor is one of the few airports in the United States to offer such pet-friendly facilities.

 
                              New AMD Gene Found
                                        From Foundation Fighting Blindness
 
The latest AMD gene discovery is reported in this week's (July 22, 2004) issue of the prestigious New England Journal of Medicine.  The gene's relationship to age-related degeneration was found by a team of researchers at the FFB-funded Research Center for Macular Degeneration and Allied Retinal Diseases at the University of Iowa.  The Center's director, and lead author on the report, is Edwin M. Stone, M.D., Ph.D.  Dr. Stone is a member of the FFB Scientific Advisory Board. 
 
Age-related macular degeneration (AMD) affects over 9 million people in the U.S.  It is the most common cause of irreversible vision loss in the western world.  As baby boomers in the U.S. reach a vulnerable age for AMD, the numbers are expected to increase.  Researchers are realizing that AMD is not caused by a single gene defect but that many variables, and perhaps multiple genes, are involved.  Environmental influences, like smoking, sun exposure, and diet, may also contribute to AMD.
 
"The finding that the fibulin 5 gene is involved in AMD is a big step
forward," says Timothy Schoen, Ph.D., director of FFB's medical therapy program.  "The more we know about genes causing retinal degenerative disease, the more closely treatments can be tailored to individual patients."  Such gene-directed therapy is bound to replace standard one-size-fits-all conventional medical treatments.
 
By continuing to find genetic links to the possibility of inherited
risks for AMD, this reinforces the need to support more research for
causes and treatments that will help not only today's patients but also their children.
 
The fibulin 5 gene is normally involved in the production of a protein
called elastin.  The protein is made in cells and extruded into
extracellular spaces where it helps form elastic fibers.  Elastic fibers
help maintain the integrity of tissues like skin and blood vessels.
They are also found in Bruch's membrane, which underlies the retinal pigment epithelium (RPE) of the retina.  We know that cells of the retina rest on the RPE and depend on the RPE and Bruch's membrane for support and nourishment.
 
---How did the researchers find that the fibulin 5 gene is involved in
AMD?---
They compared DNA in blood samples from 402 patients who had been diagnosed with AMD based on eye examinations to a nearly equal number of age-matched control subjects without AMD.  The DNA was screened for variations of the amino acid sequence in five different members of the fibulin family of genes.  But it was only in the fibulin 5 gene that variations occurred solely in AMD patients.
 
The variations (mutations) occurred only in seven of the 402 patients, but the finding was scientifically significant, statistically and practically.
 
The fibulin 5 finding is a genetic clue that researchers will use to
understand the causes of AMD and for developing treatments or preventive strategies for patients whose gene tests reveal that they may be at risk.
 
---The gene, elastin, and drusen---
The researchers believe that there may be a link between the elastin
fibers and drusen, which are a hallmark of AMD.  The yellowish protein and fat-containing drusen form in Bruch's membrane. It is possible that reduced amounts of the fibulin 5 protein in Bruch's membrane, or an aberrant fibulin 5 protein, affects the normal assembly of elastin and somehow sets the stage for drusen formation. 
 
"The Foundation Fighting Blindness believes that the finding by Dr.
Stone and his group is a significant step toward the prevention and
treatment of age-related macular degeneration," says Schoen.  "We are discovering that AMD is not a disease with a single cause and FFB is working closely with researchers to further this understanding."
 
Funding by the Foundation has led to earlier discoveries of genes
responsible for macular degeneration, including the earlier
above-mentioned AMD gene, called hemicentin-1, and the ABCR gene for Stargardt disease, a juvenile form of macular degeneration.
 
The urgent mission of The Foundation Fighting Blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher Syndrome, and the entire spectrum of retinal degenerative diseases.  
 
                        AS  I  SEE IT
                               By Dr Frank Kells, Resident Historian
 
(Editor’s Note: In keeping with Dr. Kells obsessive-compulsiveness, he had his article submitted long before his lovely wife, Janice, was admitted to the hospital. Our prayers are with you both. ED)
 
I’ve said it before a thousand times and I’ll say it again: “If I could keep only one service program for blind adults, it would be Talking Books.  Personally, I would choose this program over vocational rehabilitation (MY OWN Field), mobility training, rehab teaching, specialized recreation, adaptive technology or anything else.  I say that emphatically to provide a positive backdrop to what follows:
 
Since my last column (Fore~Sight Summer 2005) I’ve read two issues of “Talking Book Topics” as you probably did also.  But did you notice in the continuing updates on the exciting multi-year transition to a digital system of recording books and playback equipment that there are THREE PAID consulting organizations?  Beside two for engineering and technological purposes, they have representing the CONSUMERS only the National Federation of the Blind. NFB is characterized as the largest organizations of blind persons in the world, having more than 50,000 members.  Hey, wait just a minute—what happened to our American Council of the Blind which is larger and far broader representation of actual blind people.
 
When ACB was formed, starting in California in 1961, I was Director of the Sacramento Society for the Blind, right in the thick of things. The embryonic ACB was being organized, principally by way of mass resignations from NFB.  Ever since then I have been increasingly amused at NFB’s claim  of “more than 50,000members” despite constant wholesale expulsions and defections of state affiliates and individual members over the years.  Most of these rebels against NFB’s autocratic rule and appointed gurus came over to ACB.  But at NFB the beat goes on,  “…..more than 50,000 members…” never more, never less always precisely 50,000!  Wouldn’t you think that the Library of Congress or its National Library Service (our Talking Book Program) would have long gotten wise to this   “more than 50,000 members” ploy?
 
I ask you, How did a sophisticated institution like the Library of Congress overlook ACB in contracting with “consumer organizations of blind persons?”  Or did ACB somehow miss the boat?  I decided to call Melanie Bronson, ACB’s Executive Director, who told me not to worry because ACB was on the review committee with ultimate responsibility for approving the proposed system. But does that assure that ACB’s ideas will be considered or will it be too late at that time?   What about the PR advantages for NFB as THE consultant supposedly representing all blind people in America?
 
In the latest issue of Talking Book Topics, I must admit that ACB was mentioned in passing.  However, I won’t take any credit for this, although I did follow up with two e-mails to the project coordinator at the Library of Congress, Jane E. Moore, at jemo@loc.gov Maybe you’d like to make your own inquiry, but as yet, I’ve not received an answer, so good luck.
 
Now, on a far less important question:  Have you ever been reading a talking book at a considerable rate of speed when they switched from a male reader to one of female persuasion?  Then in order to continue, did you have to slow down your speed in order to get the pitch of the voice down to where you could understand what is being read?  I love to hear most female readers, but isn’t there some way, especially in view of the new technology, to solve this problem?  What ever happened to “Compressed Speech” with which we could increase the speed of the reading without raising the pitch of the voice?  Several years ago I remember participating in a test of this experimental technology but apparently nothing ever came of it.  They explained it by comparing it to a sliced sausage which was shortened by removing for example every eighth or tenth slice.  If you have any information on this subject please e-mail me at fhk@earthlink.net  More next issue.
 
(As I See It continued from previous page)
(Editor’s note:  The female brain operates more rapidly than the male.  Also the female has more to say and can say it in less time than the male.  Therefore we men would have to slow the recorder speed.  ED)
 
                              THE VIP SUPPORT CORNER
Too frequently we neglect a very important segment of our society.  That is the volunteers.  We are indeed indebted to the countless and unnamed volunteers who are there when they are needed.  Thanks to all.
 
Another group of unsung heroes are the folks who facilitate the Support Groups for the various causes.  This issue of Fore~Sight would like to recognize The Arizona Center for the Blind and Visually Impaired at 3100 E Roosevelt in Phoenix.  Class are offered in Braille, Computer, Ceramics, Spanish and many other interests. For information call 602-273-7411.
 
Olive Branch Senior Center at 107th Ave and Peoria have a VIP group under the leadership of Tim Ayres.  This growing group has more than 40 visually impaired folks in attendance.  They meet at 10am every Monday.  Dr Edwin and Ruth Druding are frequently asked to help facilitate this group. The topic of “Dealing with a blind spouse” is tentatively scheduled in the near future.    
For information call 623-947-6797. 
 
Cottonwood, AZ is fortunate to have two VIP groups under the capable facilitation of John Hunter, a former Voc Rehab teacher who is blind.  The Cottonwood Village group meets at 10 am the third Thursday of each month at 201 E Mingus. The Verde Valley Manor group meets at 2 pm the third Thursday of each month at 3400 E Goddard. There is a dozen or two folks in each group.  Newcomers are welcome. For information call 928-639-2300
 
 
 New Support Site for Blind & Visually Impaired
                                                    By Gail Wilt, Foundation for Blind Children 
 
Ann Patenaude, A visually impaired woman in the Phoenix area, has just started an Internet support group for VIP's.  She named it "Comfort Zone for the Blind and Visually Impaired."  It is now listed as a support group on Oprah Winfrey's website.  Directions are below.  I know Ann would appreciate hearing from you.  She established the site a month ago, and has had virtually no action on it so far. 
 
To access the site go to www.oprah.com, o groups, support groups, general support groups, comfort zone for the blind and visually impaired. Once you reach it, just send Ann a message in order to proceed. 
               Gail Wilt, Counselor.  The Foundation for Blind Children
               602.331.1470 x190  Make the S.M.A.R.T. move!  
 
Maricopa Club of the Blind
 
Maricopa Club had its annual Corn Festival in Chino Valley which turned into a corn eating contest.  Vern DeWitt came out winner with 15.  Several of the attendees also got drenched by rains in Prescott.
Plans are being made for the Thanksgiving and Christmas dinners which will be announced later.  Meetings are held the second Wednesday of the month at the Center for the Blind and visually Impaired 3100 E Roosevelt.  For information call 623-939-8785.
 
****Bobbing Along with Bob is missing this issue.  
Next issue will be December.  Please send articles to 
Dr Edwin Druding, Editor at 7628 N 49 Ave, Glendale AZ 85301 or
 e-mail drdruding@cox.net by December FIRST!