Welcome to CVI's SightSeeing Blog! Here we discuss topics of interest and importance to the community.
Some of the information posted here includes personal stories from CVI clients, perspectives from CVI's expert staff, hot topic issues in government, the latest trends in technology for the visually impaired, and much more. Our desire is that this blog is a useful tool to enlighten, educate and provide needed information in a meaningful dialogue for both the blind and sighted communities. Join us as we invite you to share and discuss the topics with us.
Please note: Blog comments are not to be interpreted as a direct endorsement by the Center for the Visually Impaired.
Most of you reading CVI’s SightSeeing blog have probably heard of eye diseases like glaucoma, cataracts, diabetic retinopathy, macular degeneration and maybe even retinitis pigmentosa. But how many of you have heard of uveitis? Well, don’t be surprise if you have not heard of it because it is not a well-known eye condition. According to the American Uveitis Society, each year in the United States, approximately 15 new cases of uveitis will develop out of every 100,000 people, for a total of 38,000 people per year. It is further estimated that 10% to 15% of the blindness in the United States is due to uveitis. So as you can see these numbers are pretty small. But uveitis can be an underlining condition that impacts the auto immune system and can be connected to lupus, rheumatoid arthritis and multiple sclerosis. It causes inflammation in the eye and must be treated by an eye doctor. Current treatment for uveitis can be some pretty toxic medications, like steroids, that can further hamper the auto immune system. As a result researchers are developing a potential alternative treatment that was originally derived from a Caribbean Sea anemone.
I know about uveitis first hand because this is how I lost my vision some 20 years ago. I was one of those 15 people out of 100,000 in the United States that was diagnosed and later became totally blind as a result. It came very rapidly and very painfully. I did not have a history of vision impairment and no one in my family had vision loss either. I was treated with steroids which had some very nasty side effects and compromised my immune system. So when I read about the research being done by Kineta, Inc., a biotechnology company focused on the development of new, targeted immune modulating drugs, on this treatment option for uveitis I became very interested.
Kineta, Inc. is working on a drug candidate that may be applicable to a vast array of autoimmune associated diseases including uveitis. Right now human testing is focused on psoriasis. The experimental drug, called dalazatide (formerly known as ShK-186), has concluded phase one human studies. Dalazatide was originally derived from a Caribbean Sea anemone but is used in a synthetic form now. Dr. Ernesto J. Muñoz, Associate Director for Translational Immunology at Kineta, led the company’s latest research study focused on uveitis. “Our work using a model of anterior uveitis shows that dalazatide is able to prevent disease and the inflammation that comes with it,” Dr. Muñoz said. The study was conducted in rats utilizing a well-accepted model of uveitis. Kineta tested a new formulation of dalazatide specifically designed for ocular use. The Seattle company sees potential for this application to address several autoimmune eye diseases including chronic anterior uveitis, Birdshot uveitis, Sjögren’s syndrome and dry-eye disease.
Dalazatide is significantly different from other drugs currently available for autoimmune diseases and autoimmune eye diseases. It is designed to target a subset of immune cells that cause autoimmune inflammation, without shutting down the greater immune system. The hope is that dalazatide will not only be more effective, but safer too. Kineta intends to form a partnership with a larger pharmaceutical company to bring dalazatide into later-stage clinical trials and eventually to the market.
Because it targets pathogenic T cells that bring about inflammation, the experimental drug may eventually reach beyond psoriasis and address many more autoimmune diseases. In addition to psoriasis, researchers say the drug candidate also has excellent potential for lupus, rheumatoid arthritis, multiple sclerosis, asthma and uveitis. These diseases all share the common central issue of autoimmune inflammation and that is what dalazatide is designed to target.
For more information on Kineta’s autoimmune drug in development and other potential medicines derived from the natural world read in depth coverage in National Geographic Magazine: http://ngm.nationalgeographic.com/2013/02/125-venom/holland-text
To learn more about these new developments, register for a webinar on Thursday, April 2, at 1 p.m. by going to https://engage.vevent.com/rt/kinetainc~040215
The idea behind Be My Eyes originates from the Danish 50 year old furniture craftsman Hans Jørgen Wiberg, who started losing his vision when he was 25. His wish is that the app will make both the everyday life of blind people easier and provide a new flexible opportunity to volunteer. To quote Wiberg, "It is flexible, takes only a few minutes to help and therefore the app is a good opportunity for the busy, modern individual with the energy to help others."
According to a press release from Be My Eyes, this app will help people who are blind or visually impaired "see" things with the help of sighted volunteers and the video cameras on their iPhones. Through a direct video call, the app gives blind people the opportunity to ask a sighted volunteer for help with tasks that require normal vision. The person who is blind "borrows" the helper’s eyes all through his or her smartphone. The sighted helper is able to see and describe what the blind person is showing the sighted helper by filming with the video camera in the smartphone. That way, by working together they are able to solve the problem that the blind person is facing. The Be My Eyes app is free and available in the AppStore.
I downloaded the Be My Eyes app and tried it out recently. It was incredibly easy to use and very helpful. All you do is go to the app store and install the app. Then you select whether you are a sighted or blind user. When you first open the app you are asked if you need assistance or wish to provide it. In either case you are required to register.
When you need assistance, you open the app, which can be done with Siri, an application for Apple's iOS which works as a personal assistant. Siri uses a natural language user interface to answer questions, make recommendations, and perform actions. Just tell Siri to “open Be My Eyes.” Then touch the middle of the screen to "connect to first available helper." The app will then say "creating request and connecting to servers." Then you get a musical tone and a message stating "waiting for other part." The tone continues until someone answers the call and greets you. This can take a minute or two.
On my first call, someone in Stockholm, Sweden answered. It was morning for me and evening for them. The volunteer helped me choose between a regular coffee and a decaf coffee pod for my Keurig. All I had to do was point my phone at what it was I wanted to see and it showed up on the live video camera. The call lasted a minute or so. I thanked him kindly and said good-bye. Then I tapped at the bottom of the screen to disconnect the call.
I used "Be My Eyes" again this morning. This time I chatted with the volunteer a moment. He was a firefighter in Ohio and commented on the extreme cold weather they were experiencing. I asked him what prompted him to sign up for Be My Eyes. He said he thought it was a way he could help out.
The core philosophy of this app is the idea that we all need help at times and people are willing to help. It connects us to each other in a special way and I am certain there are benefits for both parties. Aren’t we living in amazing times? And this app will soon be available on Androids too.
Could this be helpful to you or someone you know? If you are sighted, would you be interested in "lending your eyes" and becoming a sighted helper? Signing up is easy. Just go to the Be My Eyes website for more information.
So, have you heard of the Be My Eyes app for the iPhone? After reading this review would you be interested in using this app? Share your thoughts and comments in the section below.
Editor’s Note: This post was reprinted with permission. It first appeared on the American Foundation for the Blind’s VisionAware website on February 18, 2015.
CVI’s STARS’ kids are all geared up with their poker faces for this Friday’s Casino night. For the last 10 years the STARS program has been hosting this fun-filled event. It was created as a way to add a new activity for the kids to enjoy with their family and friends. Former board member and STARS mentor, Bill Cohen, who loves gambling, suggested a casino night. “I go down to Biloxi to gamble all the time and thought creating a casino night would be a fun activity for the kids to enjoy,” said Cohen. Since its inception casino night has grown steadily. This Friday about 36 STARS kids along with their parents, siblings, STARS staff and volunteers all plan to attend.
Casino night starts at 7 p.m. and ends at 9:30 p.m. When each person first comes into the room they get an equal number of chips. The goal is to win the most chips by the end of the night to win a prize. There are several prizes available, including gift cards from the VisAbility Store. STARS kids can play poker, blackjack, roulette, and Texas hold-em. In the past year or two the STARS Program has added Bingo and Animal races to appeal to the younger kids so that this event could be open to ages 5-18. All games are made accessible either by using large print or braille. For example, playing cards have braille letters and numbers and bingo boards are in a large print font. At the roulette wheel the numbers/colors are called out to confirm bets.
”When we first started casino night we had a small, toy-size roulette wheel,” said Cohen. “Today we have an actual-size one for the real game experience.”
So, this Friday night will be an exciting time for the STARS kids and their families as they enjoy casino night once again.
Reflecting on personally having poor vision, I am captivated in the concept of a tangible experience. Questioning the permanence of sight, I fear the idea of experiencing this world without my primary means of connection. I now continue to revisit this concept as I create work that welcomes those living an altered visual experience into the gallery by examining their existence. Hence my reason for creating the Invisible to Others Photography Exhibit premiering at the Savannah College of Art and Design in Atlanta.
Invisible to Others features hands-on creations about and for those with visual impairments. Presented through two series of portraits; the viewer is invited to explore imagery enhanced by luminosity as well as Braille. The second portraits are intimate cyanotype (a camera-less process that produces a photographic blueprint) which portrays those interviewed in the making of this art. Alongside the photographs are tactile embossed diptychs (paired artwork that is hands-on to the viewer and elevated with Braille) inspired from diagnostic tools used to gauge levels of perception. Welcoming both sighted and visual impaired, this exhibition presents various ways to perceive art. This exhibitions’ soundscape expands on how those with a visual impairment have coped and persevered in living in a sighted society, elaborating on the individuality and audacity within this community.
In examining a group that has been traditionally excluded from the fine art gallery, this work addresses universal humanity, while creating new inclusive ways that art can be presented through secondary senses as well as sight. Invisible to Others incorporates a multi-sensory presentation of portraits, alternative processes, and audio. Additionally, the willingness of various visual communities to work together addresses our culture’s social gap and develops a system for visual communities to coexist in the world of art.
Please join me the night of the opening reception where there will be sighted escorts to the gallery as well as assistance for refreshments. Children are welcomed. Admission is free.
Location: Savannah College of Art and Design
1600 Peachtree Street NW
Trois Gallery located in the ACA Library on the fourth floor
Atlanta, GA 30309
Opening Reception: Friday March 27th from 6 p.m. to 8 p.m.
Showing Dates: Friday March 27th through Friday April 3rd
Gallery Hours: Monday through Friday 8:30 a.m. to 5:30 p.m.
Please mark your calendars and RSVP to guarantee entry. RSVP and contact the artist with any questions at: email@example.com
Stephanie Eley is a photographer based in Atlanta, Georgia where her fine art develops conversations around social activism. She has shown at the Museum of Contemporary Arts in Georgia, and the National Women’s Caucus for Arts Organization in New York and California. Her current work Invisible to Others focuses on the limitations of the medium of photography as it communicates to the visually impaired.
It is one of those dreaded things we all must do every month. For some, it can cause major stress and anxiety. Others, it might be feelings of worry or even apathy. Still others it produces anger, outrage and sadness. So what is this uncomfortable and unhappy task that causes so much discontent? It is paying your bills.
For those of you who are sighted reading this, you already know the stress of paying bills, but add vision loss to the equation. How do you see your paper bills that come in the mail? How do you write checks to your bill collector? How do you balance your checkbook and register accurately? How do you keep up with which bill has been paid and when it was paid? If you asked for sighted help, how do you maintain your dignity, privacy and confidentiality? These are all very important questions that those of us who are blind and visually impaired have to get answered when trying to pay our bills. I am no financial mastermind or guru but here are seven stress-free ways I have found to pay your bills with vision loss.
In addition to the seven listed above, what stress-free ways have you found to pay your bills? How do you keep your bills organized and in order? Do you use assistive technology, check writing guides or other low vision aids to assist you? Share your suggestions and comments below.
I know what it is like to live with vision loss and the importance of reaching out for support. I am visually impaired and believe the adjustment process can be made easier by participating in a supportive community with others who are experiencing similar challenges. So three years ago, I started the Envision Support Group in Peachtree City, Georgia. My goal was to educate, encourage and empower people with vision impairments to live more independently and remain fully engaged in life.
I prepared myself to facilitate this support group by taking the Hadley School for the Blind courses “Self-Esteem and Adjusting with Blindness” and “Self-Help Groups, Introduction and Advanced Topics.” These informative courses were invaluable in helping to start a group and understanding what others’ experiences of vision loss may be like. I engaged the support of my local optometrist, Dr. John Henahan of Spectrum Eyecare and collaborated on an article for the newspaper on where to find help for vision loss, announcing my new support group. I had no idea how many people would be interested in such a group and was surprised when people started coming out of the woodwork! The group grew to 21 visually impaired members in the first year. Since blindness affects family members, friends and caregivers, they are encouraged to attend the meetings.
The Envision Support Group is diverse with ages ranging from 20-92 years and all kinds of visual impairments including macular degeneration, glaucoma, optic neuropathies, and retinitis pigmentosa. Despite these differences, members have much in common. Many come to learn how to live with vision loss and find resources. They learn where to get a Low Vision Exam, vision rehabilitation, Orientation and Mobility, and access technology training. Many have been connected to these resources and are in the process of receiving services. Group members share their experiences with navigating through the “system”, dealing with grief and loss issues, and planning for the future.
The group benefits from sharing information, guest speakers and topical discussions. They have learned about the talking book library and many are now patrons. Two members are now learning to drive with bi-optic glasses and one has even returned to full-time employment. Several have been directed to the right specialists for them and are now receiving treatment for their AMD. Family and friends learn how to safely guide and assist their loved ones. Members explore devices and technologies and help each other learn. One young man, who is particularly sharp with computers, offers his assistance to older members who are learning assistive technologies. Envision has had speakers on nutrition, yoga, fall prevention, volunteer opportunities in the community, and stress management. Every year Dr. Henahan attends a meeting and presents on subjects like cataracts and dry eye syndrome. He holds an “Ask the Doctor” session which the group always enjoys. These are great examples of ways peoples’ lives can change by receiving information and support.
The group plans social events and field trips for enrichment. We have a yearly Christmas party and a summer cook-out. We have attended workshops and lectures sponsored by CVI and have even gone to audio-descriptive movies together. A favorite activity is going out to eat at restaurants. These outings provide opportunities for members to practice new skills like traveling and eating in restaurants. But we also serve to build awareness in the community about the needs and abilities of the visually impaired. Sharing time together outside the meetings helps to build friendships among group members. We have become a support system for each other.
The Envision Support Group meets the first Tuesday of each month from 6:30 p.m. until 8:00 p.m. at Arbor Terrace Senior Living Center in Peachtree City (201 Crosstown Dr., PTC, 30269) in the multi-purpose room on the 2nd floor. There are usually 10-15 people in attendance and new members are always welcome. For more information contact Audrey Demmitt, RN, at firstname.lastname@example.org. You can read her personal blog at www.seeingpossibilities.com –“Navigating Life with Vision Loss.”
Whether you are interested in the Envision Support Group or CVI’s Adjusting to Vision Loss Support Group consider joining a support group in your area so you can get the help you need to live well with vision loss.
Editor’s Note: This post is the second part of a two part series on accessible prescription medication for the visually impaired. Many changes have been taking place in the pharmaceutical industry to create better access to medication labels, bottles and printed information. These changes will hopefully bring about more and better independence in overall medication management.
You know those phrases of disclaimer that come at the end of radio commercials--"Some assembly required. Sorry, Tennessee!"--well, there are quite a few special circumstances to bear in mind when shopping for medication that you will be able to handle independently. For openers, we don't know of any pharmacy that offers multiple accessible solutions. The alternative is to learn something about every accessible solution and then find out which one your store of choice offers. If their solution doesn't appeal, you might decide to go for a pharmacy that offers a solution you prefer.
Some outlets may offer no solution at all, in which case they are in technical violation of the new law as of January 2015. Bring that matter to the attention of management, and do not hesitate to talk up the accessible solution that sounds the best to you.
Here is a summary of What We Know So Far:
Walgreen's (over 8,600 stores in all 50 US states) has an exclusive relationship with the source of Talking Pill Reminder. If you are arranging for a mail order, there is a phone number you need to use to ask for the Talking Reminder at the time you order your medicine. The number is 800-345-1985; ask to speak to a customer advocate. If you are a walk-in Walgreen's customer, contact the store pharmacy manager to find out if there are any Talking Pill Reminders in the store. When we checked, many local stores had at least one of the units, and their managers were aware of the product's purpose, but a few stores were out of the loop, so to speak, and their managers only caught up when we brought the issue to their attention.
The Digital Audio Label had not been officially adopted by any national providers by press time. There was some talk of a pilot program among some Target outlets, so you might check with your local Target manager if you are interested in the Digital Audio Label. For later information about pharmacies that use the Digital Audio Label, contact Chad Hazen of AccessaMed at 360-773-0060.
The ScripTalk Station is offered for mail orders through CVS Pharmacy and Walmart. There may be some local in-store availability, so check with the local pharmacy manager at your nearest CVS or Walmart. You will need to arrange with Envision America for the free loan of a ScripTalk Station. The toll-free number to do that is 855-773-2579. That same number should yield information about how you could arrange for CVS or Walmart mail orders in conjunction with the ScripTalk hardware and labels.
Whichever numbers you call, be prepared for the possibility that you'll be asked for documentation of need, that is to say, written proof of limited sight. Those with a handy copy of a "limited vision" statement from a doctor or even a well-known agency in the field may get a quick pass, depending on how motivated the gatekeepers are to hold down demand for the new accessible solutions. Surely, over time, the process of proving need will become routine and standardized as corporate executives come to realize that checking credentials costs money, while selling accessible medicines generates revenue. The bad news is that the current situation in accessible medication labels is a jumble of complexity and rapidly changing restrictions/opportunities. The good news is that the new legal mandate offers a financial motive to providers that will, one day, open a new window of opportunity for consumers to read the label as easily as they can locate the bottle itself.
As we wrap up this two part series what do you think about the availability of accessible medications? Have you accessed any of the above accessible methods at your local pharmacy? If so what was your experience? Share your comments below.
The above article was first published in DIALOGUE Magazine, fall 2014. For a free sample issue of DIALOGUE or information about other publications, contact Blindskills, Inc., P.O. Box 5181, Salem, OR 97304-0181; Phone: 800-860-4224; E-mail: email@example.com; Website: www.blindskills.com.
“It was a Thursday in September,
A day I will always remember,
That was the day
We gave the Beamz a try.”
Well, enough already with the Temptations’ “Papa was a Rolling Stone” reference. I would like to share with you something special: I was asked by my friend, Mr. Ike Presley, of the American Foundation for the Blind, to give the BEAMZ a try.
I know you are wondering, “What in the world is a Beamz?”
The Beamz (pronounced beam-ZEE) is a wonderful interactive device using laser beams to make music. It enables people of all ages and skill levels to have fun creating and playing music. It is truly an instrument for students of all abilities. All of my students just happen to be between the ages of 6 months to 3 years of age. I used it first with one of my individual students. We were working on putting things in and taking things out. My student was doing very well with taking things out. Putting things in was a bit more challenging for him.
Thank goodness on that day we had use of the Beamz. After trying many different sizes of bowls to help my student put things in, I decide to try the Beamz as a great way to put things in and get a powerful reward. I helped my student hand-over-hand to move his hand in a vertical motion just like placing an object in a bowl. Every time he made his hand move down the Beamz it played a wonderful drum solo. I placed an object in his hand to place in the cradle of the Beamz and he and his Mother absolutely loved it. I realized that this device could definitely be a great aid in teaching cause - effect, up and down, left and right, in and out, and so many other concepts. The reward is very satisfying for both the child and the parent.
Later that week (on the Thursday that I reference earlier in my writing), the Wake Up and Sing class had an opportunity to try this thing out!
I started out by showing the class how the Beamz worked: You can play four different sounds at one time on the Beamz, you can choose to have the background music playing or just make sounds by themselves. Really these sounds are riffs, not just a chord. My students on this day preferred the Blue Grass Sounds: a nice crisp banjo, a fiddle with attitude, drums and piano. We took turns passing the Beamz around, helping the children hand-over-hand at first to produce some music. After a few tries, our students made beautiful music. The children preferred having the background music playing; every baby in the room had a big smile on their face. It was beautiful to behold. The parents loved it because everyone could have fun with the Beamz. It was exciting for everybody. The parents started coming up with other ideas of how to use the Beamz as a learning tool and as a Fun Tool.
I, Ms. Jacque, highly recommend the Beamz as a tool for stimulating, motivating and educating students of all abilities. David, my guitar, feels the same. Additionally, the Beamz is available to purchase through their website and has links to videos of children and families using the product.
Editor’s note: This product review was originally printed in the BEGIN Now! November/December 2014 newsletter.