DONNA: Please discuss what is involved in the cost and procedures for training in low vision aids for better use of my peripheral vision.

DR. HENSIL: [Regarding costs], Medicare will cover the low vision evaluation itself (usually costs about $200 for the eval). They will not cover the low vision refraction or any aids, but these are not all that costly. The refraction range varies from doctor to doctor, we charge $80, but I've seen it as high as $150. If you bring your own aids to the eval, it is unlikely that you will need to purchase more. If you make an appointment, stress that you want eccentric viewing training. For eccentric viewing, the doctor first needs to help you determine your 'sweet spot' or that area of vision in your periphery that sees the best. Everybody is different on this. Then they help teach you to use this eccentric view. I always use the same scenario for my patients... First, I have them look straight at my face, making it dissappear...then I remind them that there is a definite advantage to macular degeneration...you can make people you don't like disappear!! They always laugh, this reduces the stress level and makes training go far more smoothly. We then proceed to practice in-office and I give a home exercise to every patient to take home with them (This costs the patient nothing at all) and have them practice 5 minutes every day.

With regard to the aids that you do have, do you mind if I offer a couple handy tips for using them? Some of the biggest problems when folks go out and get their own aids is that they use them wrong. For your magnifiers, hold the lens up close to your eye and the paper you are reading at the focal distance of the lens..this increases your field of view.

When reading anything, use a piece of black construction paper to underline the text you are reading (I recommend scrap booking paper, it is very inexpensive, but durable). This keeps you from losing your place.

Have your light be a good gooseneck lamp with a lamp shade that does not allow diffuse light all over the place, this cuts down glare. Point the lamp over your shoulder on the side with the better eye, so the light falls only on what you are doing. Use pink lightbulbs to further reduce glare.

Low vision specialists can help you with a lot more... things like sewing, marking your stove or microwave or dryer for easy usability (home visits are probably the most important thing I do), ensuring your lighting is correct, that you are using your glasses right, that you are using an eccentric view, helping with computer programs (like windows accessability options which magnify 2X and ZoomText which goes up to 16X), and making sure you are not overmagnified with your present magnifiers (a big problem I often see..too much magnification is as bad as not enough).

DONNA: Rehabilitation, I thought, was so you could work again. I've not worked for many, many years because I was passing out with my other medical troubles, heart etc.

DR. HENSIL: Rehab can be for working, but is for other things too. For example, I do home visits where I teach folks how to cook safely, mark their stove or other appliances, teach how to use power tools safely, teach eccentric viewing, how to use aids properly, help with lighting and other home modifications as needed, etc. There are a lot of different aspects to rehab, not just vocational rehabilitation (though that is certainly a subset of low vision rehab). Sewing, playing cards, reading music, painting, gardening, birdwatching, attending sporting events, and reading the paper are probably the other most common factors addressed during rehab...of course depending on the individual's hobbies, job, and desires.

MARTHA: At what point is it a good idea to contact a low vision specialist?

DR. HENSIL: There is no visual acuity cut off or requirement to see a low vision specialist. This is because to one persion 20/100 vision does not affect their life at all, while to someone else 20/40 vision may be debilitating...it all depends on adaptations the person has, individual needs and lifestyle.

It is time to see a low vision specialist when your vision is negatively impacting your life in some way, when you can no longer do the things you want to do comfortably. You may still be reading the newspaper, for example, but if it is a long and tortuous process just to make out two paragraphs and you want to be able to read the entire paper, then set up an appointment.

It is usually best if you wait until your vision is stable. My rule of thumb for patients is wait until vision hasn't changed in the last month...that way you don't have help, then turn around and need to go back for more assistance right away.

MARTHA: I've been in the same career since I was 16 and absolutely love my work. I do typing, etc. for the general public. It would be nice if all of my customers brought me original material that I could read, but they don't. I know I can get visual aids to help with the size, but I still have a LOT of trouble when there's not a good contrast (like dark black on white). Do you know of aids that help the "contrast" problem? Or perhaps it's time to find another career.

DR. HENSIL: To enhance contrast, the best solutions are the simplest. A very good gooseneck lamp with 60 watt pink lightbulb works marvels in helping with contrast. Corning 450 yellow clip ons can enhance contrast as well.

For higher tech options, a CCTV enhances contrast plus gives the option of reverse contrast. Computers with windows can enhance or reverse contrast as well (check out the accessability options that come with windows).

DONNA: Does 6/30 [as in England] mean 20/30?

DR. HENSIL: 6/whatever number is how they do it in Canada and England and other places...6 meters is 20 feet. If you play with the fractions, it is pretty easy to get equivalents.

6/6 is 20/20
6/12 is 20/40
6/30 is 20/100

MARY ANN: Is there any type of pink plastic cover that could be used to filter the light from the florescent bulbs?

DR. HENSIL: To my knowledge, fluorescent and halogen lights will not do any damage for MD. A lot of people find fluorescent lights disconcerting because of the flicker, which can be more noticable with MD.

There are filters that can be placed over a fluorescent light..they are round plastic filters and I believe they can be ordered from theater companies (these companies make the colored filters used over the lights for stage shows). McManus is one such company, but I don't have the contact information with me. A better, and less expensive option, would be to buy some pink acetate and line the plastic cover that is on a lot of ceiling fluorescent lights with it. The best bet is still to switch to pink incandescent. Directed light is better for glare than diffuse light.

NANCY: I think it is time I look for a new low vision specialist. The one I went to said he could do nothing for me except possibly hand held magnifiers. My insurance does not cover the cost of any of this including the evaluation therefore I have been reluctant to chase rainbows I can't afford.

DR. HENSIL: Contact your state blind association, your local lions club, and a good low vision specialist ... you'd be surprised how much funding there is available for low vision care. The problem is finding a good low vision specialist. Too many have a couple of magnifiers and that is yet, yet they call themselves low vision. Interview the offices you are considering...

Ask:
How much training you receive with the device (in time and number of visits)? At least 1/2 hour should be given for each aid that you will receive. Even hand held magnifiers have 'good' and 'not so good' ways to use them...you need to be afforded that time one on one with a doctor or low vision rehabilitation specialist to learn to use these aids. You should never be rushed through this process.

What is the office's end point of success?

It should be when you have reached your personal visual goals and can comfortably achieve them at home independently.

How many visits are included in the low vision evaluation fee?

At least one follow up visit, usually at the time the low vision aids are dispensed, should be included, or be a relatively low additional fee. What kind of information is given to you and your doctors regarding the low vision examination?

Be sure that you, your eye doctors, and your general doctor all get comprehensive letters regarding your evaluation. Make sure the letter to you is in lay terms, not medical terms.

What low vision aids are available?

At least one CCTV, several hand held mags, illuminated mags, stand mags, full field microscopes, hand held and spectacle mounted telescopes, and tinted lenses should be available.

Are home visits included in the evaluation fee or even an option with that particular office?

This varies from office to office, but home visits should at least be available if needed.

What non-optical aids will they help you use?

At least typoscopes, lighting instruction, and availability of needle threaders, large print playing cards, syringe measuring devices should be available should these be your goals.

How long is their low vision evaluation?

Any less than 1.5 hours is not a full evaluation.

Is eccentric viewing training a part of their low vision evaluation?

This is a crucial tool for those with MD. It should be stressed during an eval.

Exactly what are the components of their low vision evaluation?

The history is the most important part...you should be questioned in detail about your life and activities, and distinct goals should be formulated.

What qualifications does the doctor have?

At least a fellow in the academy for low vision or a MS degree in low vision (preferrably the MS degree) is helpful, though many years of experience in the field can do just as much.

Is there a low vision rehab specialist on staff?

There should be someone, or if the Dr. has his/her MS degree, this is about the same.

Can you be taught to use computer assistive technology?

This is the new wave of low vision rehabilitation, and among the most useful (and versitile, and least expensive) tools available to those with any vision impairment. The office should either offer it directly or be able to direct you to someone who does.

Unfortunately, there are no standards for low vision care, and it is a shame. Just in my area, there are 3-4 very good low vision practitioners, and about 10 that give those who know what they are doing a bad name. It is a shame, really, because low vision rehab is so successful when done well. By arming yourself with questions, and interviewing each office before making an appointment, you are better able to ensure yourself quality care. Going through the state blind association will also be a huge help for you.

JOYCE: I've looked through our low vison pages. I'm looking for the sort of thing that some doctors wear i.e., a headband with a small light in the center of it. Lamps don't work for my purposes (visual art expressions). I need my hands free.

DR. HENSIL: In addition to the head lamps, try using a gooseneck lamp with a shade that directs light only in one direction. Point this light over the shoulder of your better eye and directly onto your work materials. Standard lamps cause diffuse light and glare, and do not provide enough light onto your reading materials. Gooseneck lamps solve this problem, and you can pick them up at any Kmart, Ames or related store for $20-$30. Using pink lightbulbs will also help.

BRIAN: This I suppose comes into the realm of ergonomics, but my wife has Stargart's and cannot get it through to her management that the glare is bothering her. They even sent someone with a light meter, who said that that there was not enough light where her workstation was. Her job is a 100% screen based. How much external light do you need? What aids can be provided to reduce the glare in a badly lit office, and how can you explain to management in one syllable or less the glare problem?

DR. HENSIL: The best way to demonstrate to the office what a glare problem is would be to get 'cataract simulators' from you wife's low vision optometrist to borrow, and make management wear them for a while. They will see for themselves what a glare problems is. I know you wife does not have cataracts, but this particular simulator demonstrates glare better than the MD simulator. Ask the low vision optometrist to phone your wife's employers. Part of a low vision doctor's job is to advocate for their patients, to ensure that they are getting the accommodations they need in the workplace. Also contact the blindness association for the state, they will also assist your wife in getting the modifications that she needs. To reduce glare, the best option is to see a low vision specialist for corning lenses. These lenses darken in bright light, and are made specifically to cut glare for those with low vision. The yellow lens works very well both indoors and outdoors to reduce glare.

Other options...if your wife can reach the lights in her office, or perhaps you can do this, is to get pink theater light acetate. It is something like $2.00 a very large sheet, and you can cut this material to fit inside the flurescent light casing and reduce glare this way.

Glare screens for the computer are an option, but this also reduces the amount of light and contrast on the monitor, so may do more harm than good.

Also, light meters don't tell anything about glare. Glare has nothing to do with the amount of light, but how that light is positioned relative to the eyes, the types of lights, the distance of the light from the person or computer screen, and other factors.

SHARON N: I hope I haven't asked this question already. Why do I have to take off my glasses to read if, as my optometrist says, my eyes are preferring this prescription? It seems logical to me that if I can read with the book close up then there must be a "best" prescription that would permit me to read at a normal distance. I will see him again this week. Is there an adjustment or something I could ask him to modify or??

Incidentally, with reference to computer glasses, this prescription is usually ok for computer distance, when I am able to read the screen. As you said it varies from day to day.

As to low vision rehab. I am putting together a list of whom to speak with and where to go in Ontario for low vision services. I will forward the completed information as soon as I correlate the info.

DR. HENSIL: The question you ask is one I have to answer almost every day, but haven't quite figured out a good way to explain it. I'll make my best stab at it though :-)

Every optical system has a focal point... a distance at which the object is clear. Take a magnifying glass. If you hold the magnifier too close or too far away from the object, that object will be blurry. It has to be held at just the right distance. The stronger the power magnifier, the closer that 'right' distance will be.

To your eye...it too, is an optical system. You are probably nearsighted given that you are reading more comfortably without your glasses. People who are nearsighted have eyes that optically are built like a magnifier, so has a focal point relatively close to the face. The more nearsighted you are, the closer to you that focal point is. When you take advantage of this system with your own eyes, you are using your own built in magnification. Holding the book close makes it clear. It also induces something called 'relative distance magnification.' This just means that the closer something is, the bigger it appears to be. Imagine the date on a penny. Held at arms length, no one could read it, but bring it in close, and you can see it since the numbers appear bigger. By holding the book closer, you are essentially enlarging the print, making it easier to see.

So, there is a perfect prescription for every working distance. But the farther the working distance, the smaller things will appear to be. You are lucky in that your eyes have their own built in perfect prescripton for a close reading distance that enables you sufficient magnification to read.

Stronger power bifocals in your glasses may help you get a slightly greater working distance without compromising your vision, so ask your eye doctor about trying it with loose lenses in the office.

About asking for help from rehab people... I certainly would like a copy of your list when you have it finished, for future reference. Also, don't think of it as asking for help...that really isn't what it is. It is more like taking a class to learn a new skill. You would not feel like a victim because you sign up for scuba class or a class in a foreign language. Rehab specialists are teachers, you are taking their class. Nothing more. It is not a sign of helplessness, but instead a sign of curiosity and quest to learn a new way of doing things.

ALIA: I'm looking for something that tones down the lights from other cars. Overall, I am looking for something that will help me read, see the computer which I am in front of 100% of the work day, and something that brings up my confidence in driving. Is there anything that will help me? Are there any devices that are not hideous and obvious as gluing a telescope to one eye and nothing on the other. I don't want to look like a freak. I'm also frustrated that I live 2 miles outside of Manhattan (NYC) where there are specialists of all kinds and I get stuck with useless doctors. Any advice or navigation in the right direction would be very appreciated.

DR. HENSIL: Your frustration is completely understandable.

There are an infinite number of aids out there, but it sounds like you are looking for perfection...a cosmetically perfect telescope, a way to enlarge print so that only you can see that it is enlarged. Unfortunately, there is no such thing as perfect. There is no such thing as returning your vision to 20/20, and no way to prevent it from eventually going to 20/200 or so. I'm sorry to be so blunt, but it is the truth.

There are telescopes that are not so obvious as the one you mentioned. It is called the Ocutech autofocus or Ocutech manual focus (I prefer the manual focus, as the autofocus costs more and does some really strange things sometimes, but it depends on your needs, not my preference). It is a small black box that sits on the top of the pair of glasses. It does not protrude 2 inches from the eye, and is easier to fit and use than the type you were describing.

The reason that your doctor focused on the good eye is simple...the brain only attends to the better eye when presented with one good and one blurry eye. If your right eye is the better eye now, that is the one your brain will attend to the most. If down the road, your left becomes the better eye, then your brain will switch over and concentrate more on that eye. For distance, you use the peripheral vision of both eyes, it is more for reading that your brain will pick one or the other, since it is more detailed work and fusing a clearer image with a blurrier image degrades what you see.

Low vision DOES work. As I said in the last letter, it sounds like your low vision doc didn't really listen to you or your needs. She certainly did not answer your questions. At the same time, you need to be open to trying new aids, new computer programs (ZoomText, Jaws), new techniques for using your vision.

About your computer screen...have you considered a screen reader? A program such as Jaws could be installed into your computer which would read aloud everything on the screen. Just wear a pair of earphones and no one would have any idea that you were really listening to your computer, not a radio.

Since glare is such a problem, have you tried the Corning lenses? These reduce glare indoors and out with a yellow, orange, or reddish tint to the glasses. It may make your vision more comfortable, particularly in areas of bright lights and watching the TV. They also enhance contrast.

There is no such thing as being a lost cause. Blindness/low vision is a hurdle...it is midset that is really the disability.

Take your family with you to a low vision doctor. Part of the job of the low vision doctor is to explain to the family what is going on. In my office, I use simulators to show each person roughtly what you see....why you can get around a room with no problem, but can not read small print. This is certainly NOT in your head.

MARIAN: I read the frustrations of so many of our friends who cannot find a competent low vision specialist in their area and I am wondering---do you have a web page or literature on your services that we can use and get? You obviously know what you are talking about and really care about our concernsand it seems to me to make sense that those of our friends who need a low visions specialist would save money in the long run by flying in to see you. You have never tried to use our list to promote your services. You have always used it to help us. I appreciate that so much.

DR. HENSIL: I don't join mailing lists to get patients, so I don't really want to send any advertising or office info over the mailing list..that is not what this (or any other) mailing list was designed for.

If anyone does want my practice information, I'd be happy to send some literature on it. Just email me at hensil@gateway.net .

MARTHA: What's the general opinion about when to seek low vision rehab?

DR. HENSIL: What all of you need to realize is that it is not up to your retina specialists when you need a low vision specialist...it is up to YOU! Only you know your visual needs, your lifestyle, and whether or not you have given up visual tasks due to your vision. Retina specialists generally don't know much about low vision rehab, so don't know who qualifies and who does not (I have gotten a LOT of inappropriate referrals from retina specialists).

I like to see people get help early. The sooner you learn a new way of doing things, the better off you are if/when your vision takes a turn for the worse...this means more time practicing these new skills, more familiarity with them, so if your vision changes it is not all that big of a deal.

Retina specialists know retinas, they don't know low vision rehab (that is why they don't provide the services themselves :-)