We Need Better Assistive Devices for AMD

June at 99

As Mom enters her 100th year,  I have some wishes for her to help her AMD and others suffering with this condition.

  1. A simple universal TV remove with no more than 3 or 4 buttons  – On/Off, volume, channel surf, and the biggest button of all – Favorites.
  2. Better text to speech devices. All of the ones we tried required a decent amount of holding the device steady, ensuring it was in focus and then pushing a button to snap a picture. Then they rarely can interpret all that is on the page if there are numbers, columns, or other non-text items.
  3. A simple phone simple to the above remote – On/Off, big buttons for saved phone numbers or voice commands, Volume/Speaker.  If I could program all her numbers into this device and then all she had to do is say, “Call Candy.” Life would be good. Yes, I know smartphones do this, but there’s a lot of other things to wade through to get to the voice commands. Basically, all I want is the Siri feature of the iPhone. That’s it. Nothing more. Keep it simple.
  4. A simple radio.
  5. A talking watch with batteries for the speech part that last more than 6 months. We’ve never been successful in getting these things to work beyond 6 months. I’ve had batteries replaced, but they also do not last and it’s difficult to find places that can even replace those batteries. we’ve bought three of these watches so far.
  6. A cure or at the very least a viable ay of implanting a device to help restore sight. We’re getting close, but still so far away.

That last wish is a bit personal.

This year, my vision, too began to fail because of cataracts. Fortunately, for me, my eye sight can be restored and already am through my first surgery with the second coming in a few weeks.

My current close call with blindness is being sidestepped with surgery. Cataracts used to cause blindness until the technology was invented to remove the cataract and implant a lens. The technology improves every year and the implants are spectacular!  But AMD is hereditary and I have a good chance of facing the same issues my mother has in a decade or two. So for Mom, for everyone now suffering from AMD, and those, like me, with a good chance of contracting it, let’s find a way to work for a cure and prevention.


Life with June: Turning 99, my mother soldiers on

My mother turned 99 on June 7.  Her macular degeneration didn’t start until her mid-late 80s, but when it began to progress, it went fairly quickly. Still, she lives independently and as we celebrated her birthday, she noted that while the ravages of age are taking their toll, she is soldiering on.

She has few medical complaints other than her macular degeneration and what she expresses as “extreme tiredness” for which the doctors can find no cause. When they explain that she’s nearly 100 and her body is simply slowing down, my mother’s reaction is “Oh B#$#%.”

June tries to walk as much as she can each day. She focuses on eating right. She gets down when she thinks about everything loss of sight has taken from her such as her sewing and quilting. Amazingly, one day I was lamenting the need to hem a pair of pants and she said, “You know how you can just blind stitch on the machine, yes?” Well, I kind of did, but no.

She took the material and even though she couldn’t really see, her finger memory adeptly folded the material to the way it would need to be fed into the machine and explained the process. Amazing.

If you haven’t yet visited our Facebook page, please do. June’s birthday post received nearly 1,000 likes and many shares. While my work day keeps me from blogging as much as I should, this outpouring of love for my mom has inspired me to be more diligent. Thank you all who read this blog and who follow us on Facebook.


Is a telescopic implant the answer for AMD?

sunset on lake
Eye implant diagram
The implantable telescope technology reduces the impact of the central vision blind spot from advanced macular degeneration. The telescope implant projects the objects the patient is looking at on to the healthy area of the light-sensing retina undamaged by the disease. — UCDavis

My mother’s biggest lament with her macular degeneration is not so much that she cannot see, but that she cannot see enough to do what she loves.

My mother is a quilter. A lifelong seamstress, she turned to quilting in her 60s.  After mastering traditional techniques, such as in the quilt to the left, turned to mostly experimental types of quilting and in her mid-80s was on the road to discovering fiber art. That road however, came to a dead end when her macular degeneration progressed stealthily and quickly. Her eye doctors assured her she would never go completely blind.

This was little comfort when she could no longer see to pick out material, thread needles, cut her intricate shapes and put everything together at the machine and by hand.

So reading about UC-Davis’ telescopic implant was encouraging on two fronts. One, it was approved by the FDA in 2010 as “the only medical/surgical option available that restores a portion of vision lost to the disease,” and two, that Virginia Bane, the artist depicted in the press release is 89. So, for those who think it’s too late, it just may not be.
Continue reading “Is a telescopic implant the answer for AMD?”

Life with June: When the lights began to dim

sunset on lake
Navigating the gathering darkness

I’ll never forget when Mom’s condition first began to be noticeable. Her eyes just could not adjust in dim or low light. We were in a local department store and because she didn’t like escalators, she said she’d meet me upstairs and she’d take the elevator.

This didn’t strike me as odd. We’d split up while shopping a million times in our lives. But today was different.

When we caught up with each other upstairs I saw something in my mother’s face I’d never seen before — fear. She was visibly shaken. The elevator was dark. The buttons were difficult to see and Mom had a difficult time figuring everything out. She got very disoriented.

I knew then that our life was changing but wasn’t quite sure how. Continue reading “Life with June: When the lights began to dim”