These tips are from the perspective of a person diagnosed with severe vision loss who has reasonably clear central vision and has difficulty hearing in noisy environments. They are recommended based on the experiences of a person with Usher Syndrome type 2A, a form of retinitis pigmentosa.
1. Wear a visor or a hat if the sun bothers you. In light rain, a brimmed hat will protect your hearing aids. In cases of questionable weather, carry a fisherman’s hat and stuff it in your back pocket/pocketbook.
2. Sunglasses? Use them. There are various shadings; some people prefer amber because it increases contrast. Get UV 100 at the minimum but you can go to UV 400 for maximum protection. Polarized lenses are okay, but you will have difficulty reading iPhones or digital watches because those lenses are polarized too, and the dual polarization will cancel your ability to see them.
3. Do you wear glasses? If not, get them now. They will be your safety glasses. As your vision deteriorates, you will come upon a new realization of what you cannot do anymore. These glasses will help greatly in reducing your pain of making such discoveries. A poked eye from a closet hanger can easily put you out of commission for a couple of days. Or would you rather wait and walk into an overhanging branch and scratch your cornea? Wearing glasses now will lessen your trauma of slowly losing your vision. It’s tough enough to live with your condition without the added bonus of learning the hard way. Those of you with contact lenses: like it or not, dump them and get those glasses now. Or learn the hard way. There are no limitations for the types and styles of glasses other than to say that the lenses must be big enough to adequately protect you. That means no pince-nez types. Good-sized lenses.
4. Wear rubber-soled shoes. Get the kind that can take a little rain without being slippery. Leather soled shoes are more slippery, and you would do well to avoid them for good. You need sure footing when in strange settings, and your need to slip is never there, so eliminate this problem at the outset.
5. Get a Medic Alert bracelet or necklace. The general public do not know of your condition, and in the case of an emergency, your ability to communicate may be reduced to the point of those Emergency Medical Technicians having to make judgments on what to do with you. However, all is not lost if you wear a Medic Alert bracelet or necklace with the description of “hearing and vision impaired.” The EMTs are trained to look for MedicAlert bracelets and necklaces, and when discovered, they will make a REAL effort to communicate with you. Make the job easy for them, and believe me, they’ll take the time and effort to work with you. Those EMTs need to know. It’s their mission. Don’t forget to list other health conditions on the MedicAlert documents; they could be more important than your sight problem. Many people fail to update their information on a regular basis on their MedicAlert account. Don’t fall into that rut. Update every time you change anything in your health status, from medications to next of kin contact information. Membership starts at $24.99 per year.
6. Carry something in your hand. Those of you with comparatively good vision, say at least 90 degrees of field: If you insist on not using a cane, then carry something while you go out walking. What you carry is not really important. Rather, what is important is that people can see at a distance that you have something in your hand. This very fact gives you space, and others will walk around you to avoid walking into the package in your hand. This is especially useful when walking by the roadside. Cars will zoom within inches of your elbow, but not if you carry a package or a walking stick between you and the road. It is truly amazing what the motorist’s priorities are concerning your welfare. They will give you no room but your package/walking stick plenty of room. Of course, you have to keep in mind the cars need room too. If there is a question of who really needs the space at the roadside, you can rest assured the car will win every time.
7. Get a cell phone and carry it with you. The reasons for having a cell phone go beyond the ability to make and receive calls or text messages. You can use your cell phone to find directions and information, and it is vital for getting help quickly if you have an emergency situation.
In your Contacts, make your first entry something that shows up at the top of your Contacts list. I use: A Next of Kin. The A puts the entry at the top of my list. Next of Kin speaks for itself.
8. If headaches are a regular problem, then definitely see your doctor. Low vision and cataracts can produce some of the most memorable headaches. Left untended, they will only get worse, and here’s a heads up: Tylenol usually does not help this problem at all.
9. Everything off the darn floor! Been tripping over shoes? How about jackets? Newspapers? Your kid’s schoolbooks? Sports equipment? There are no two ways about it. You have to get pigheaded and enforce the No Clutter On The Floor Law. They won’t take you seriously, so you will have to pick up the offending articles and throw them … where? Outside? Down to the basement? Consider this carefully as you may encounter the same articles when you travel there. I have thrown out stuff onto the front porch. Works well for me because I rarely go out there. Other times, I have thrown articles into the wrong bedroom on purpose. This has got to be one of the most difficult items to enforce on your family, but it’s totally necessary, and therefore there’s no room for give and take. Make them wish they didn’t leave the shoes for you to pick up, and you’re getting closer to your goal. Don’t ever give them a break. You’re not getting a break from your condition. You’re living with it 24 hours a day, 365 days a year, and it will only get worse. Of course, the family members will gleefully grab your shoes you left on the floor in front of you while watching TV, and this is your payback. It doesn’t count for you, and they have to absolutely get the idea that this is so. So don’t trip over your own shoes. Keep them on, as I do, and this brings me to #10.
10. Always wear footwear, not just socks. Legs on kitchen chairs can stick out from the seat an extra two inches and your big toe can easily meet one of those legs with a bit more gusto than you would like. Cracking your toenail HURTS! Your condition will not permit you to see down constantly while advancing ahead. It’s a matter of letting the feet fend for themselves, and they will do a credible job if you wear footwear. Even sandals and moccasins will do. The idea is not to let a chair leg go in between your toes. It will put a damper on your forward progress.
11. Learn to keyboard in the classic typewriter way, not the hunt and peck method. You’re losing vision and the computer will maximize any capability you have for a long time to come. By typing you can write, email, or utilize any form of communication involving the written word. Computers can be adjusted for any vision problem, be it lighting, size of type, color blindness, background color, anything. If you can see it, the computer can be set up to make sure you do. Even when you cannot see anymore, you can still type away. If you learned to keyboard before blindness, then you can communicate well enough. There are programs for the blind that will take the written word and pronounce it for you. They are called screen readers—JAWS is a benchmark program.
12. Nothing on the stairways. Not ever, ever, ever. Your tolerance for this has to be Draconian. NEVER.
13. Avoid staying in environments where there is extreme contrast in lighting. Say you’re 10 feet inside an unlit garage with the garage door open in the middle of a sunny day. You look in, you look out. A couple of hours of this, and soon the classic headache of #8 will be raging. Stay out in the sun, or stay in the garage and close the door. Even lighting is what’s important here. If necessary, turn on lights inside to even the lighting. Being in the shade of trees on a bright day is not a problem, and you can take it all day because the contrast there is not so extreme. Sometimes it even works to close the blinds/curtains in the middle of the day to avoid glare problems. And turn on lights if necessary.
14. Have your family leave doors fully opened or fully closed, but never halfway. Kissing the edges of doors is no fun! A major corollary to this concept is kitchen cabinet doors, appliance doors, and dresser drawers. Don’t leave them open for any length of time. The broiler door can be most painful as it may burn you in addition to your fall. An open dishwasher door can break your fall and break your dishwasher, and an open microwave door can leave you with a painful shiner.
15. Clean up the clutter outside. Clutter in the house is one thing. Clutter outside is another. The bikes left on the driveway and tennis balls in the grass are tough to handle when mowing the lawn, if you still do this. Frequently neighbors’ kids leave things in your way. Communication is important here. By fits and starts you can get across the idea to the kids of the neighborhood that sure, they can park their bikes at the side of the porch steps, not in front. Repeat offenders will necessarily get the same treatment your kids get. This is where communication is critical. Those parents have to know you will take action on your property if they do not teach their kids to respect your needs. You are going to have to give a lot more here as you cannot make the world fit you. You cannot throw the offending bike into the street, but a carefully placed foot on the spokes of a wheel will usually bring about compliance in a hurry. After all, you stepped off the front porch and walked onto the bike. Thank goodness you weren’t hurt. Don’t get too cavalier about this, however, because the world is much bigger than you ever will be. Like I said, you will have to give a lot more in the world outside your house than you will inside.
16. Have plenty of flashlights handy, say a half dozen placed in strategic places where more than once you needed a light. One by your TV remote, one in the kitchen to look way back for that odd pan, one for items you dropped in the living room. Don’t forget one for the car. When traveling, always carry a couple. Penlights that fit in one’s shirt pocket work well for elevator buttons and menus in a dark restaurant. Keep a standing inventory of batteries for all your different flashlights. Dead batteries mean useless flashlights.
17. Dropped a screw, nut, or anything small and lost it? Try this technique to find it. Get down on your hands and knees and put your head as near to the floor as possible with an eye looking along the plane of the floor. Your reduced vision may not pick up the object when standing, but with your eye on the floor you only have to scan slowly along the plane of the floor. In this mode, your visual field size is not a factor in the search. Scan slowly, and you will eventually find it. There are a few tricks to optimizing this technique such as stepping away from the predicted area of the lost screw and then doing the scanning. Sometimes you have to move a little and scan again because chair legs hid the screw on the first scanning. If it is dark, lay a flashlight on the floor and use it as a searchlight in your scan. As a last resort, use the broom and start cleaning house ahead of time and get your screw albeit a tad dirty. If the #9 THINGS OFF THE FLOOR LAW is not observed, then you will have more difficulty. To reduce the likelihood of this problem in the future, pull out a baking sheet with raised edges on all four sides and do your work on that. Anything that falls out of your hands has a good chance of getting caught by the edges of the sheet. The tools can be laid outside the sheet.
18. Lost your visual focus? That is, your two eyes are looking in divergent directions, and you are trying to get them back into working in tandem? Do this: Hold out your index finger, pointed up, and fixate on it. Almost always works. Why? I’m not sure, but it may be because your prior conditioning and eye-hand coordination were learned a long time ago and will always be in your memory. As you put out your finger, your brain knows how far away that finger is and will tell your eyes to zero in on that particular point in space. The eyes know where your finger is via the brain, and your prior eye-hand coordination of years past comes into play, and voila! Both eyes are now looking at the same finger. This technique is so fast that sometimes I get my focus back before my arm is fully extended.
19. I find that I must take time to understand my surroundings and mentally adjust to avoid complete disorientation. For example, I’ve been on a subway car near the end of the train when a trick of lighting, the angle of the sun – something – inverts the rushing motion of the movement of the car. Suddenly I feel I’m moving in the opposite direction of the direction I logically know that I’m moving. I can’t intellectually handle this feeling, and it disorients me to the point of nausea and/or panic. Now, having said all that, if the train is parked at the station, and I’m looking through the window at the end of the car, and then a train on the next track over moves, I feel my own car shifting or moving in some way. Which train is actually moving? Half the time I guess wrong. Occasionally, I have similar episodes walking the sidewalks in center city Philadelphia. The situation can become acute in just a second, and it takes time to square away my perceptions of what is actually going on around me. If this happens to you, try this: As long as you can be sure of not being in the middle of a busy street, just close your eyes for a few seconds. Slowly, open them both together, not just one. Still having trouble? Look in a different direction. A variant of seasickness applies here. It’s mostly visual but with any little movement, it can become a physical sensation that brings on disorientation. Close the eyes again if needed.
20. Consider using rope lights similar to those used in the aisles in movie theaters. They are very useful for orientation in the dark. I use one on my carport post. Just one. It is blue in color which makes it easy to identify even at Christmas time. The location is perfect because I can see my carport post from anywhere on my property. Even if I lose my bearings but see the blue lit post, I know where I am after one step: either on grass or macadam. So I can get mail or take trash to the curb at night with no problem. I gave a rope light to a friend who had a dog going blind. There was a swimming pool in the backyard, and my friend placed the light strategically so the dog had no trouble going to the bathroom and avoiding the pool. These lights use little power so they can be set to a timer or left on 24/7, if needed. Some are solar powered. Good indoors or out. You can get them at Walmart, Target, Amazon. Lengths vary from 6 feet to 48 feet.
21. Alarms. The deafblind don’t respond to standard clock radio alarms. Even timers that turn on lights don’t work well for me because I simply turn over in bed and resume my peaceful slumber. I have found a solution that works for me. I have an old clamshell cell phone that’s no longer serviced by a provider. I set the phone to vibrate only and set the alarm in the phone. I have three defaults: one for 5 AM, 6 AM and 6:30 AM. All are set for daily use, but I have only one alarm time turned on. I have an old sock, cut at the heel (the foot part is discarded), and I slide the upper part of the sock up my forearm for a snug fit. Then I slide the cell phone inside, against my skin and on the outside of my forearm. Those bed shaker alarms can’t beat it for size, weight, portability, and convenience.
In my area, fire departments give out such cell phones with chargers because the 911 mode is functional despite the SIM card removal. Such phones should have a working vibrator alarm. Ebay may be a good source of used clamshell phones. Try to get a battery that has a useful life ahead of it. I turn off my alarm most days. When traveling, I leave the alarm phone on 24/7, but at home I use it only for events requiring me to be up at specific times.
Those half socks: Walmart sells crew socks that are cheap enough to use just for the alarm purpose. Compression socks work great, too. There are tricks to using the sock to keep the phone on your arm all night. At first no adjustment is necessary; however, in time the socks stretch, and one has to tuck the cut edge into the sleeve to prevent the phone sliding out during the night. Or you can simply cut another sock.
22. Spices in the kitchen. Here are some tips for those who use spices in their cooking. First, keep the spices easily accessible to the stove – in a cabinet over the stove or to the side of it – and on each container, add a large label where you can write the contents. The second approach is to stand the spices in a deep drawer near the stove and label the cap or top using a circular gummed label and a marker pen. Obviously one cannot write “garlic salt” in that small circular label, but GS would do. Thyme can be TH. You know best how to use shorthand for these spices. You can even combine the two approaches and label both the top and the container.
23. It helps greatly to carry a notepad, perhaps in your shirt or pants pocket, with an inside cover notation similar to this:
"I AM VISUALLY IMPAIRED AND CANNOT HEAR WELL IN AN ENVIRONMENT LIKE THIS. PLEASE HELP ME TO:"
On the notepad itself write what you need or the help you want. This technique got me out of jams big time. Really works, too. This tidbit is from Dona Sauerburger, O&M Specialist from Maryland.
24. For those who are quite mobile and go places: Use a high visibility backpack that glows in the dark or at least reflects light. One item that MUST be in my backpack is a spare cane. Over the years I’ve busted several and lost two during my outings. The spare permitted me to continue the day with no change in plans. Worth every penny.
25. The Gunfighter’s Seat. Back in the Wild West days of Dodge City and the OK Corral, the gunfighter’s seat was a useful tactic. The tactic is to find a seat that sees the entire room. The gunfighter would do that by sitting on the hinged side of the door so he could shoot at his enemies through the opening between the door and the frame. You probably don’t need to go that far, but it is useful to have a good bird’s eye view of the waiting room or meeting room if you need to track or spot certain people coming and going, or if your hearing is marginal, but you can see a bit better. As in most of life, you will have to compromise because the seat may be taken or someone may be standing in front of you. Two things to keep in mind: First, do not be close to heavy traffic. The door to the kitchen in a restaurant is one example. Second, stay away from seats in the corners of the room – at least five feet or so. The reason is that sound waves bounce off walls, and in corners they can bounce and re-bounce almost like a parabolic collector or reflector of noise. You don’t want to be there.
These tips are written from a first person narrative and have been slightly edited for clarity.