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We Need Better Assistive Devices for AMD

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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.