AMD Assistive Technology – The OrCam

Disclaimer:  I am not an expert on AMD or the assistive technology that is available to help those of us living with low vision.

I cannot endorse a product that I have no experience with but from time to time I will share an article that I stumble across hoping that it might be helpful to someone else.  There are many new products on the market and more on the way but everything is not for everyone.  My goal here is simply to share.  Do your own research and turn to your low vision network to help you make decisions regarding your vision.

I ran across the following article today.  It looks interesting to me.  Maybe it will be for you too.  here is the link:

Low Vision Assistive Device by OrCam

Accepting the reality of AMD

My diagnosis of Age Related Macular Degeneration  (AMD) came too soon.  I was only 52 years old but I was the third generation in my family to receive the news.  My paternal grandmother lost her vision in one eye after being diagnosed in her early 80’s.  My Dad was diagnosed in his late 60’s.  And, there was me and I was only 52.  How could this be I asked myself repeatedly.  I don’t remember getting an answer.

As I approach my 60th birthday in a few weeks, I have lost enough vision now that denial is no longer an option.  Trust me.  I’ve tried denying that AMD is stealing my vision and, my independence.  But now it’s time to get real and start living life as a person with low vision and that means learning to ask for help and to embrace the resources and technology that are available for me, a person living with low vision from AMD.  It’s time for me to accept the reality of AMD

This blog will serve a dual purpose.  I hope to share openly the fears and challenges that those with low vision face while also sharing the resources I discover to help us live a full and normal life.  So, let’s get this party started.

The Journey Ends

The angels took my Daddy home today.  His journey in that crazy, dark world of Alzheimer’s disease is over.  As you might expect, there is enormous relief but there is also anger for the years this disease stole from me.  I really only had one fear in life and that was losing my Dad.  He was my hero, my advocate, my confidant, and my rock.  The foundation of “me” feels a little shaky tonight but he would want me to be strong.  So strong I will be.

In some ways it doesn’t seem like seven years have passed since we first heard the words “He has Alzheimer’s”.  The first years were not so bad.  Sure, he forgot things and he put things in strange places but we didn’t mind so much.  Love, when unconditional can carry you through things you never dreamed of.  The real tough part came when we knew it was time for assisted living.  Looking back I’m sure that was when we started fast-tracking through the advanced stage of the disease.  We were prepared, we though, for what was to come.

I don’t guess you are ever really ready though.  The end came fast and hard and the beast tried its best to take the last shred of dignity from my Dad.  It was a powerful enemy but our love for my Dad was stronger.  With the help of some amazing and dedicated folks at the assisted living facility and the skilled guidance of hospice, my Dad was cared for in a way he deserved.  He was surrounded by love and light and had the permission of his entire family to take leave of his bondage here on earth.  There may be a hole in my universe today but there will be a new star in the sky tonight.  Rest in peace my amazing and loving Daddy.  You are finally free!

Daddy’s Hands

handsWriting hasn’t been a priority lately.  You may have noticed.  Well, you probably didn’t notice and that’s okay/  If you’ve ever read my blog it was ,most  likely because someone you love has Alzheimer’s disease or dementia and will understand. I haven’t written because there really wasn’t much to say.  Not much has changed.

While I wasn’t writing, I have continued to grieve over the loss of my Dad.  No, he hasn’t died but he is every bit as gone as if that were true.  Dad has lost a lot of ground.  His communication is random and mostly a garbled mix of sounds that once were parts of words.  He still smiles if you act like you told him something funny and on a really good day, you can tell him who you are and he will say something like “that[‘s nice”.

I have become obsessed with Daddy’s hands.  I think of his hands often and remember the gentleness of his touch.  Sometimes late at night I flash back to better days when his strong grip on my shoulder was as close to a hug as he could muster at the time.  Mostly I remember him walking up behind my mother and scratching her back tenderly.  It was how he said “I love you” to her without words.

My Dad wore two rings; one on each hand.  He never took them off.  One, his wedding band and the other a ruby Masonic ring that was passed down through the family when he became a Mason.  Dad lost the ruby ring about a year ago and he has lost so much weight that we took his wedding band home before it too was lost.  Even without the rings, I am still obsessed with Daddy’s hands.  The hands are all that physically resemble this man who has held my heart in those hands for almost 60 years and oh how I miss him.

It’s funny how something as simple as the sight of those hands can trigger a lifetime of memories. And I find myself wondering if Alzheimer’s will one day steal those too.

Brrrr….It’s Cold Outside

snow 1-30-03bIt’s -11 degrees outside this morning.  That’s too cold for any living creature to be outside in the elements.

As I sit here in my warm little home sipping a steaming hot cup of coffee, there is an elderly  man lost.  He has Alzheimer’s and has wandered from his home. All the local media outlets are airing his photo and asking the public to be on the lookout for him but the chances of him surviving are slim.  My heart aches for his family and I pray that someone, somewhere, saw him and took him in.  I pray he is safe and warm because this could so easily have been my Dad – before we got smart.

If you have a loved one with dementia or Alzheimer’s, please contact your local law enforcement.  Ask if they are enrolled with Project Lifesaver.  And if they are, get your loved one registered with them.  To learn more, click the link below.  If the gentleman mentioned above had been registered, he would be safely back with his family.  It could have saved his life.

Project Lifesaver: Saving Lives of At-Risk Youth and Adults

Alzheimers Guilt

Christmas came and went and so has the first month of this new year.  Dad co25014 Christmas tree at Eddie'sntinues to lose ground slowly.  His hearing has faded and his vision has gotten worse.  He sleeps more and paces less.Food no longer teases his taste buds and meals are just part of a routine. I wonder sometimes if it’s just the disease or the lack of stimulation.  Dad now refuses to participate in group activity and prefers to just be left alone. His sense of humor is still intact and he loves to laugh with both the staff and his family.  Laughter was prevalent in our family and even Alzheimer’s isn’t powerful enough to rob us of that.

There are days when I feel guilty.  Sometimes the guilt is about not wanting to visit as often.  Sometimes it’s about not taking care of him at home.  I’ve learned to live with the guilt but it still hurts sometimes.  My Dad didn’t deserve what Alzheimers has done to him but this disease simply does not discriminate.

When I started this blog, I hoped that in sharing the experience, others might be helped by knowing they weren’t the first to feel angry or sad or, afraid.  After all this time I still feel all of those things from time to time.  I cry easily over the smallest of things and am surprised when the big things don’t affect me at all.  If I’ve learned anything at all it is that I have a lot more to learn and I am expecting 2015 to be full of hard lessons.  We can’t hold this disease at bay much longer.  That much is evident.  The medications (Namenda and Aricept) gave us a bit more time with Dad and the Seroquel has helped to balance the fear and confusion that Dad must have felt as his senses lost their connection to rational thought.  Now, it feels like we’re watching a light bulb burn out slowly.  Every now and then there is a flicker of bright light and then it pales again.  Each time leaves me wondering if it is the last and I am always surprised when I catch myself hoping so.  The guilt comes in waves again,

If there is a bright light here it is that my Dad is content.  He isn’t suffering.  He doesn’t miss his family and friends but we sure miss him.

We Get By With a Little Help From Our Friends

Christmas will soon be here and for many Native American families, it won’t be a happy time.  Will you help me help my Monacan Indian friends in Amherst County,, Virginia?

Last year, 128 children were given a Christmas through the generosity of friends of the Monacan Indian Nation.  The need is even greater this year as many families in the community are struggling just to put food on the table.  No child should wake up on Christmas morning without something to open.  No child should go to bed on Christmas Eve without hope.  Together, we can make sure that doesn’t happen in the Monacan Indian community.

I have set up a GoFundMe site to help raise money so that we can help the Monacan Nation provide at the very least a new outfit and a toy for every child whose family cannot afford to provide Christmas for the children.  Will you help?  Will you share the link or ask youro church or community leaders too help?   Together we can make a difference!

Click here to make a donation.