See What I See
People tell me their stories. Often, they start with, “My wife, husband, mother, father, girlfriend, boyfriend doesn’t understand how serious AMD is!” I’ve heard many of the details such as:
- “They think I just need stronger glasses.”
- “They’re embarrassed when I pull out my magnifier in a public place.”
- “They think the eye specialist made a mistake. They want me to go to another one.”
- “They’re in denial. They won’t even talk to me about it!”
AMD affects the people around you
A disease like AMD affects the people around you. When they think of you with a vision impairment, even if you don’t have one at the time, they often think about how that would change their lives. Will they have to take over things around the house? Will they end up as your caregiver?
The first step to help them is through education. Here are some ideas:
- Ask them to come to this site and its forum or the site’s Facebook page so that they can learn that there are other people with the same problem. If you can, find out who the other caregivers/loved ones are and help them connect.
- Show them vision simulators that demonstrate what your current vision is like or what your future vision might be. (I’ve shared information about some vision simulators below)
- Try to see things from their point of view. Ask them how they feel. What are they afraid of?
- Take them to the eye specialist with you so they can hear what you’re being told.
If they're still having trouble understanding...
- Try asking for specific help. For example, “Can you please tell me what’s on this prescription bottle?” or “Will you please help me to find the expiration date of this milk?”
- If you have problems when you go away from home such as reading menus or reading labels of products, carry magnifiers, lights, use accessibility options built into your smartphone, put helpful apps on it. Consider it your "toolbox."
- Look for a support group that you can attend. Ask your eye specialist for references. The American Federation for the Blind (AFB) has a fantastic page ‘Find Services for People Who Are Blind or Visually Impaired’ where you enter your state or Canadian province and choose a category including one for support groups. While you’re there, look at all the other categories they offer.
Online macular degeneration vision simulators
- The website "Look to Your Future" has a section "Check Your Symptoms" where you can show the various types of vision impairment some people have.
- The Versant Health company has sent vision simulators to 10,000 eye care providers to use to educate their patients. It helps patients see what vision would be like if they had glaucoma, cataracts, diabetic retinopathy, presbyopia, glare or age-related macular degeneration. They also have a vision simulation feature on their website.
- There’s a good YouTube video "Vision Loss Simulator" from VisionAware.
Macular degeneration vision simulator apps
- ViaOpta Sim from Novartis is available for both Apple and Android devices. The app shows vision simulations for dry AMD, wet AMD, Myopic CNV and several other disorders.
- The RNIB AMD app for iPad simulates each of the stages of AMD. The RNIB, a great UK organization, had one for iPhone but no more. I contacted not long ago, and they said they will probably not reissue it.
Give it time
AMD is a disease that affects us usually as we get older. I don’t know if you’ve experienced it, but for me, change gets harder as the years go by. Try to stay positive about how you’ll be prepared to face whatever comes your way. Hopefully, that will rub off on those around you!
Does macular degeneration affect your mental health?