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.
In 2006 I began to have severe sleeping problems. For years I had always been a good sleeper. Going to bed at the same time each night and rising around the same time in the morning. Even taking a long nap during the day did not negatively impact my ability to get a good night sleep. But something shifted and I began a long and stressful battle with sleeping. At first I thought it was just stress from normal life challenges. My schedule at work had changed. I was doing sub contract writing work on the side. My roommate had just moved out. A romantic relationship had just ended. So I naturally thought that just the everyday things of life were causing me to not sleep well. But my lack of sleep persisted to the point I was not sleeping at all. Many nights I had difficulty falling asleep and would just lay in the bed for a very long time wide awake and feeling stressed. Other nights I would fall asleep with no problem but could not stay a sleep. I would wake up from the slightest noise or to go to the bathroom and then I could never get back to sleep. And lastly, other nights I just couldn’t sleep at all and would literally stay up for 24 hours.
At first I tried over-the-counter sleep aids. I tried nature relaxation CDs. I tried drinking warm teas and taking warm baths. But none of these remedies worked. I realized that something was majorly wrong with me and that I needed to seek medical attention. I first went to see my primary care physician and he immediately thought I had sleep apnea. He gave me a referral to a sleep doctor for follow up. When I saw the sleep doctor she agreed with my PCP and scheduled me for a sleep test. This meant that I had to spend the night in a lab while they monitored my sleeping. I had to come to the lab in the late evening, change into my pajamas and wear monitoring devices all over my body. They not only monitored my sleeping, but my breathing, heart rate, any body movements and probably other things I can’t remember! When the results came back it showed that I had Sleep Apnea.
Next, My sleep doctor gave me a prescription for a CPAP machine. But this device never worked and something in the back of my mind told me that this was not the cause of my severe sleeping problem. I shared this concerned with my sleep doctor but since the lab results showed sleep apnea there was not much she could say about it. I began to share my worries with friends, family and co-workers; expressing that the CPap machine was not helping me. Some nights I felt worse after using the machine than before.
At one point I came across some information on sleeping disorders and people with disabilities. I had never taken my blindness into consideration with my sleeping problems. A friend told me that since people who are totally blind can’t see sunlight, their bodies could not tell it was time for sleep. A local vision rehab center was doing a workshop for people with total blindness who were experiencing sleeping problems. I went and learned that my poor sleeping might be due to the fact I was totally blind and not to sleep apnea after all. I began to do more research and have more conversation with people about this. I even went back to my sleep doctor to discuss the possibility. She said that was something new that she was not aware of and would look into it. But in the meantime I continued unsuccessfully to use the CPAP machine.
After multiple fits and starts, I gave up on the CPAP machine and just tried to do the best I could. I had become a bit depressed but also resolved that this just might be my life and to get over it. But a friend told me about a governmental clinical trial. They were looking for people who were totally blind, had no light perception and were having problems with sleeping. I said, “Well that sounds like me!” I contacted the researcher and signed up. For two years I provided saliva samples about once a month to the Oregon State University Sleep Lab. They analyzed my samples and discovered that my circadian sleep rhythm was all over the chart. I would do well for a time and then I would move over to the left. Then I would do well for a time and then move all the way over to the right. Basically I was zigging and zagging all over the medical chart. They found this interesting and asked me to sample more often and stay with the study a little longer. I agreed. At this point in my life I was feeling tired, depressed and desperate for a clear diagnosis of what was wrong with me. So I was willing to persevere to get to a solution. I also wore a sleep watch and provided any changes in my health, eating or exercise routines. I told my PCP about the clinical trial and that I had stopped using the CPAP machine. He ordered another sleep test and it was discovered that I really did not have sleep apnea after all. The lab results showed that I did not have enough breathing episodes to warrant the condition.
At the end of the sampling, the researchers came back and told me I had the non-24 hour sleep wake disorder. Non-24 is a serious, chronic circadian rhythm disorder that affects a large majority of people who are totally blind. They had discovered that my internal body clock had gotten off track and felt that it was due to the fact I was totally blind. At some point in those first years of poor sleeping, I must have lost all light perception which would explain why for years I had good quality sleep and then in 2006 things changed. They told me there was no cure but I could take very small amounts of over-the-counter melatonin an hour or two before going to bed. The important thing was to stay on a good sleep routine. I was saddened by the fact there was no cure but relieved that I had a diagnosis and some medication I could take to help me. I decided to make peace with my situation and just continue to do the best I could. I decided to not get stressed about it anymore. To not be depressed about it anymore. To sleep to the best of my ability.
Then in 2010, I heard about the research that Vanda Pharmaceuticals was doing. They had contacted CVI looking for totally blind people that had problems sleeping. Sounds like me again! A co-worker and I had a meeting with a marketing representative and I shared my personal story. He was very familiar with the Oregon State University Sleep Lab. He said they were working on developing a medication that would help remedy this problem. Well, they did just that. In January, 2014 Vanda Pharmaceuticals was given FDA approval for the drug call Hetlioz and it was available that following summer. I contacted my sleep doctor and made arrangements to get a prescription. It has been almost a year since I have been on Hetlioz and it has greatly improved my quality of sleep. If my story sounds familiar and you are blind and experiencing problems with sleeping then please attend a lunch and learn hosted by Vanda Pharmaceuticals on Thursday, June 11th from 12:15 p.m. until 2 p.m. Mallery Mayo, PhD and Senior Medical Science Liaison from Vanda Pharmaceuticals Inc., will aim to educate everyone present about Non-24, its symptoms, its impact and its prevalence in the blind community. The lunch and learn will be held at CVI, 739 West Peachtree Street, NW, Atlanta, GA, in the Bellsouth Conference Room. Please RSVP so that we can get an accurate count for food to Empish Thomas at 404-602-4277 or email@example.com.
Editor’s Note: This blog post was first printed on the VisionAware website in March, 2014.
May is national Physical Fitness and Sports Month and what better way to stay in shape and be active, than to create a profile on the newly launched United In Stride website. This site, which was created by the Massachusetts Association for the Blind and Visually Impaired, is an international database where blind and visually impaired walkers, joggers and runners can find sighted guides. If you have wanted to get off your treadmill and get outside and walk this website is for you. If you are traveling and want to maintain your fitness or running goals while out of town this website is for you. If you are in need of a sighted guide to participate in a marathon this website is for you. Whatever your fitness goals are this website is for you.
Richard Hunter, Volunteer Program Coordinator for the USABA National Marathon Championships, is the creator of United In Stride. He says he came up with the concept after years of networking and trying to connect visually impaired runners with guides. “As a visually impaired athlete I would come across a lot of people who wanted to be guides but there was no real way to plug them into their local community,” he said. “I also saw the same for the visually impaired community too. If you didn’t know key people it was a real struggle to connect.” He teamed up with MABVI after an impressive experience working with their guides for the 2008 Boston Marathon. For several years MABVI has participated in the Boston Marathon and has formed a “team with a Vision” to help bring awareness and raise donations for their vision rehabilitation program. “I was blown away with their support and help to blind runners and it inspired me to replicate their model back home in California,” said Hunter, who lives near Sacramento. “My wife and I donated the seed money to get the website started.” The website was launched a few days after the Boston Marathon this year and as of today has over 400 people registered.
The registration process is very straightforward. It resembles setting up a profile on Match.com or Facebook. Just create your profile with your name, sports or activities, pace levels and zip code. There are privacy controls for safety and security. Additionally when interacting with a potential match there is internal messaging so no personal e-mail address or phone numbers are given out until you specifically do so. The website allows for people to independently connect with others on their terms. Also on the site is a tutorial for guides to know how to properly guide a blind or visually impaired person. But Hunter notes that, “we have individual needs and will let the guides know what they are. The most important thing is to have good communication skills and be assertive.”
So, now there are no more excuses to get outside and walk or jog. The challenges in finding a guide to run with have decreased. If you are blind or visually impaired and need a sighted guide plug into United in Stride.
Some people might consider shaving to be a grooming task that is hazardous for men who are blind or visually impaired. People might feel that having a sighted person to handle shaving duties would be a safer option. But with daily practice the shaving skills required don’t have to necessarily rely on vision only. Additionally, learning basic safety techniques and paying closer attention to the sense of touch, a visually impaired or blind man can learn to effectively shave with little harm or injury. Below are some useful tools that men can use to have a successful shaving experience. But ladies don’t disregard this blog post because some of these same tools can be used for shaving your legs, bikini and underarms too.
Begin by determining the areas that require shaving. Use your sense of touch, and explore your face feeling for hairy stubble. If you’ve had sight previously and like to stand in front of a mirror when you shave, continue to do so. It can feel more comfortable and natural to use a mirror, even when it’s difficult to see. Or you can also use a magnifying mirror with an adjustable arm to enlarge the image of your face and head.
To get comfortable and build confidence practice first with an empty razor or with the electric razor turned off. An electric razor is a good option for men with vision loss, but you can also continue to use a safety razor. Use your hand that is not holding the razor as a “guide hand” to explore the area you are about to shave. Use your free hand to guide the razor. The guide hand can also draw the skin tight, which allows the hairs to stand up straight for a closer shave. You can also use your free hand as a guide for repositioning the razor when you make a new stroke.
Once you have practiced and feel comfortable with your technique, it is time to actually shave your face. Collect all of your shaving supplies beforehand. They should include a razor, shaving cream or lotion, after-shave, a washcloth, and a towel. Once you have gathered your supplies, wash the area to be shaved with soap and water then pat dry. This will soften your hair or whiskers, which makes it easier to shave cleanly and safely. Use shaving cream or lotion if you use a safety razor. It will protect your skin and help you better locate the areas you’ve already shaved.
One way to begin is to place the index finger of your guide hand at the base of a sideburn, which can act as a “landmark.” Bring the hand holding the razor up to meet the guide finger. Shave downward at an angle over the cheekbone, from the sideburn line toward the chin. Use your index finger as a guide. If you wear eyeglasses, use the earpiece as a “landmark.” For the best coverage, use overlapping strokes and shave the area a second time at a 90-degree angle to the original strokes. In areas where your beard is heavier, such as the chin and neck, shave against the grain of the whiskers. In areas where the skin is more sensitive, such as the cheeks and upper lip, use downward strokes and shave with the grain of the whiskers. Shave one side of your face at a time, which helps you keep track of the areas you’ve shaved.
To protect moles and skin blemishes, place your fingertip over the area and shave around it. When you’re done, use your fingertips to check one more time for unshaved areas. Check your ears and the tip of your nose for excess shaving cream. Shape your beard or sideburns with a beard trimmer to help maintain a desired contour or straight line. Use the hand that is not holding the trimmer as a guide to explore and precede the area you are about to trim. Ask your barber to touch up the outline of your beard or sideburns when you get a haircut and correct any small errors you may have made.
So how do you shave those wiry whiskers? Do you have tips or techniques that you use as a visually impaired or blind man that have helped you to have a successful shaving experience? Share your suggestions in the comment section below.
Editor’s note: This post was written with the assistance from the Personal Self-Care Section on the AFB VisionAware website.
On Thursday, May 14th at 6 p.m. the Buckhead Theater will be alive with jamming music; delicious food and great fun as CVI host its 12th annual True Blue Do fundraiser. This year’s entertainment will feature live music from the world’s only known band composed of eye doctors and their musically acclaimed patients! Performing together for one night only, The Macular Degenerates – ophthalmologists Stephen Hamilton, MD (drums), Scott Pastor, MD (guitar), and J. Michael Roach, MD (bass) – will be joined by special guests The HIPAA Violators – patients Sanders Raysin (guitar), Billy Reid (sax), Dub Hudson (sax), and the sensational Margie Joseph, 1970s R&B chart-topping soul and funk singer extraordinaire. CVI volunteer, Kendall Simpson, will round out the band performing on keyboard.
The True Blue Do is an exciting event whose proceeds give hope to thousands of Georgians with vision loss and their families. CVI is the only nonprofit organization in Georgia that provides vision rehabilitation services and support to people of all ages. With nearly 400 attendees each year, it’s a true party with a purpose. Funds raised through the event support CVI’s life changing services and programs for those impacted by vision loss. Susan and Frank Virgin are Honorary Chairs of this year’s True Blue Do, recognizing their many years of dedicated service to CVI.
Guests will enjoy a casual evening featuring great food, cocktails, silent and live auctions and the opportunity to “Flip for a Trip” to win airline tickets. Tickets for the event are $125 per person and include open bar, heavy hors d’oeuvres and all activities and entertainment. Tickets can be conveniently purchased on CVI’s website.
The event will be held at the Buckhead Theatre, located at 3110 Roswell Road, Atlanta, from 6:00 p.m. to 9:00 p.m. For more information contact Helene J. Erenberg, Senior Director of Development at 404-602-4275 or firstname.lastname@example.org.
CVI’s Florence Maxwell Low Vision Clinic has been hitting the road and traveling around the state of Georgia conducting Living with Low Vision presentations. This month’s stop is in Macon. On Monday, May 11th CVI staff members will be at the Vineville United Methodist Church . Living with Low Vision is a two-part, no-cost program. The first part includes Vision 101; featuring an overview of vision loss, a discussion of adaptive techniques and devices, and a demonstration of Orientation and Mobility techniques for safe travel, inside and outside the home. A social worker will be present to meet with individuals. Featured optical devices from CVI's VisAbility Store will be available for hands-on trials and purchase. For the second part of the presentation, 5 low vision candidates will be selected for the low vision clinic component. An optometrist who is a low vision specialist will perform a thorough low vision exam. A low vision specialist will conduct an evaluation of all aspects of daily living activities, an assessment to determine if optical aids would be beneficial, and training on devices. Orientation and Mobility training and information about community services will be provided
This entire presentation is for:
CVI is able to host this life-changing presentation through a grant from Georgia’s Drive for Sight program. This Program is based on voluntary donations. Georgia drivers may choose to donate one dollar at the time of their initial or renewal application for motor vehicle drivers’ licenses.
Here is additional information on the Living with Vision Presentation in Macon:
Where: Vineville United Methodist Church, 2045 Vineville Avenue, Macon, Georgia, 31204
When: Monday, May 11, 2015
Time: 9:30 a.m. until 11:00 a.m. Or 1:30 p.m. until 3:00 p.m.
Contact: Diane Lumpkin at 704-236-7444 or email@example.com
This past December, I finally bit the apple and purchased an iPhone! For years I have used either an accessible cell phone specifically for the blind or an old fashion flip phone. I have known about iPhones and how great they are to use but my current phone always suited me just fine. I had been totally uninterested in the fancy bells and whistles of this new growing technology. I had been unconcerned with downloading books, reading my stock portfolio or listening to music on my phone; I just wanted to make a simple phone call and hang up. Well, I have turned over a new leaf and purchased an iPhone. I know my iPhone-loving friends had to do a double take when I told them what I had done. They couldn’t believe that I had come to Jesus and converted to Apple’s theology. But yes, it is true. I am a true believer and have an iPhone now.
You might be asking “What caused me to change my mind after all this time?” It was what Adam Hinchliffe shared in a post on the SightSeeing Blog about Uber. We both live in the Atlanta area and getting around can be very challenging even in a large city. After years of dealing with the ups and downs of public transportation, expensive cabs and personal drivers; I knew I needed something different. Several of my blind and visually impaired friends were singing the praises of Uber and how great an experience they were having zooming around Atlanta. But the caveat was that you could only access it through an app on your iPhone. So, my mind began to turn and I realized that if I wanted better transportation options I had to change my tune with my cell phone technology. I also realized that my flip phone was not totally accessible. I had problems getting to my contact list and some of the other features of my phone whereas the iPhone did not present that kind of problem.
Going from a flip phone with an old-fashioned keypad to a smartphone with a flat surface was a big jump for me. Flicking, tapping and swiping my fingers a cross a screen was a new thing I had to adjust to and even now is still taking some getting used to. But the more I use my phone the easier it gets. My iPhone friends have been more than gracious in helping me to learn my phone and are available when I need them for help and assistance. Sometimes I have called them on the phone for a quick trouble-shooting lesson. Or I have sent over an e-mail for some step-by-step directions. I have also accessed Hadley School for the Blind instructional YouTube videos. I try to watch one each week or so to learn something new about my iPhone. There are several available and new ones are added all the time. The videos focus on one aspect of the phone using the Voice over Command and you can access them for free anytime. They also have free webinars on a regular basis introducing new aspects of the iPhone as well. I also read Access World Magazine that has great articles on the latest in iPhone technology. Just last week I downloaded the book “iOS 8 Without the Eye” by Jonathan Mosen and am reading through it to learn more ways to use my phone. Additionally, I paid $99 for the Apple Care Plan which gives me two years of unlimited tech support through Apples Accessibility Services. I can call their toll free tech support line for people that are blind and visually impaired. A representative will assist me with any question I have about my phone. I have gotten assistance with learning how to download my e-mails, troubleshooting text messages, learning how to swipe or flick my finger better on the screen, learning how to use the reader, and accessing Siri better. It has only been a few months, but I am well on my way. The iPhone has so many features to offer and I know that it will take time to learn them all. I just try each week to learn something new. I will continue to keep you posted as I travel on this new and exciting iPhone journey!
Can We Talk? Do you have an iPhone? If not, have you considered purchasing one? If you do have an iPhone, what benefits have you gain from it? How did you first learn how to use it? How has it helped enhance your life as a blind or visually impaired person?
Editor’s Note: April is National Poetry Month and Former client, Debra Bell, shares about her love of poetry and how it has helped her find peace in dealing with her vision loss and her son’s disability.
Writing Poetry helps me find peace in coping with my son’s illness. For me, writing poetry is an act as natural as breathing is. Poetry is also the best way for me to harness that powerful overflow of feelings that Wordsworth spoke of and recollected, turning them into a universal expression of feeling that we can all relate to.
I have been serious about my poetry for many years. My dedication was recognized in 1993 when I was inducted into the International Society of Poets at a ceremony in Washington, DC, where I performed my best-known poem "Diamond." Since then, I have kept on writing poetry, reciting it and submitting it for inclusion in poetry competitions. My poem “Diamond” is in an anthology collection, called "A Break in the Clouds".
My devotion to my skills as a poet came after I had already explored other artistic avenues. I was first violinist in my school orchestra; performed as a creative dancer and gymnast. I also did some modeling; was recognized in several competitions as one of Atlanta's best creative dancers on skates; and for two years was a dancer on the syndicated TV show "James Brown's Future Shock." I guess I'm really an entertainer at heart. I wrote poetry and short stories as a child, got into performing poetry and creative dance, and kept going.
But everything is secondary to the most important responsibility in my life which is caring for my son, Eddie, 33. He was born with a rare disease called Hurler-Scheie Syndrome which is genetic and affects only 1 out of 100,000 children. It is an enzyme deficiency that causes damage to every organ in the body. I accept that I have a son who has a disability, but I treat him like a normal adult. I want him to live as normally as possible. He is truly my diamond. My son's illness has inspired me to begin thinking of ways I might attract funding for a foundation to promote Hurler-Scheie Syndrome research.
My son's illness has kept me focused on his needs, not mine, but I can still use poetry to express some of the feelings that this experience has caused in me. My son and I are now legally blind due to Stargardt’s Disease. This has caused me not to drive and be able to do what I use to do for him.
The experience of being a client in CVI’s New View Adult Rehab Program has been an anchor for me. I have found a new inspiration to continue higher education. I plan to enroll in a school this year to study creative writing, so that I can finish a book about my life story and a book of poetry. I can say that life is good even with the challenges I have faced. I still have hope.
Below is my most popular poem “Diamond.” I was honored to recite it at the summer 2014 CVI New View Adult Rehab Program graduation ceremony.
By Debra J. Bell
I am a Diamond, a rare jewel
I’ve been refined by the hands of time
I keep crying out for someone to realize it
Here I am the rare jewel you’ve been waiting for
When I arrived, I arrived with grace and splendor
But no one recognized me
My shining brilliance hidden beneath my beauty
Love brought me here; I stood the test of time
How long will I go unnoticed?
What will I have to do-disappear like the wind?
Maybe you’d feel my absence
A real artist would know his masterpiece
He could identify with his awesome power
The ability to create such a beauty in his mind
Then cause it to appear before his eyes
When I arrive he would protect me, take care of me
Because I’m his to love
But sometimes greed causes one to miss the real thing in life
It’s not just a dream
Yes, I am a Diamond, a rare jewel
Diamonds always survive the test of time
I’m special, a jewel
Yes, a beauty!
Mahatma Ghandi once said “Be the change that you wish to see in the world.” Are you being that change? Do you see the impact you have on another’s life?
At CVI, there are many ways you can volunteer your time--many ways you can make an impact. One of those ways is to be a friendly visitor to a client. What is a friendly visitor you ask? A friendly visitor is a volunteer that visits a visually impaired client once or twice a month to read their mail, help pay bills, assist with labeling canned goods, take a walk in the neighborhood and most importantly, have conversation. This service is very important to our clients since many of them are homebound or isolated. Having someone stop by even for friendly conversation can make a tremendous difference. This one on one volunteer activity is an excellent way to see the impact you are having on another’s life. Let me share an example from an event that occurred about two years ago.
One of CVI’s volunteers was visiting one of our senior clients. He visited her about twice a month to help her read her mail, pay bills and talk. While going through her mail, he noticed some discrepancies on her bank statement. He immediately alerted the client. Money was being withdrawn from her account. The client was understandably concerned. The volunteer, with permission from the client, contacted her bank and the major credit agencies to alert them of possible fraud. That same weekend the volunteer emailed me a very long email documenting everything that he found and the steps he had taken to that point. I quickly emailed the volunteer back thanking him for everything he had done and for keeping me in the loop. I promised I would call the client first thing on Monday morning. When I spoke with her that Monday morning, she was very upset. She had hired a caretaker to come in to her home and help clean her house, prepare food etc…What the client didn’t know was that the caretaker was stealing checks from her and account numbers to both her savings and checking account. The caretaker had also set up a car payment to be automatically withdrawn from the client’s account every month. I left work, picked the client up, drove her to her bank and then to the police department to file a report. A detective was assigned to her case.
When all was said and done, this client had over $10,000 stolen from her life savings. Fortunately, however, she was able to have all of the money returned. If it wasn’t for the volunteer discovering this discrepancy and setting the wheels in motion, who knows what would have happened to the client and her life savings. This client is forever in her volunteer’s debt for coming to her aid. And the volunteer saw firsthand the difference he was able to make in her life.
The volunteer has since moved, changed jobs and started a family, but maintains contact with the client on a regular basis. Both individuals have forged a friendship that goes beyond volunteering. I shared this story with you to illustrate the impact that this one volunteer had on a client. This week, we celebrate National Volunteer Week. National Volunteer Week is about inspiring, acknowledging and encouraging people to seek out ways to engage in their community. It’s about demonstrating that by working together, we have the tenacity to meet our challenges and accomplish our goals. It is about taking action by actively demonstrating your collective power to make a difference. It is about being the change you wish to see in this world.
Are you willing to take that step to be the change you want to see? Are you interested in volunteering at CVI? If so, check out the volunteer page on the CVI website for more information.