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visual changes and slogging through days
Posted: Monday, September 18, 2017 4:49 AM
Joined: 9/12/2013
Posts: 3608

I was diagnosed in 2013, misdiagnosed for 12 years before that.

the thing that got doctors to recognize Alzheimer's was that my vision had changed. When they found loss of peripheral field and depth distortion I figured out my car passenger anxiety and tension was because it does look like all traffic bends towards a head on collision effect, so I figured out that sitting in back seat stopped all that yelling and stuff.

Last few weeks I have been fighting "my hair". It kept dropping into my face which was tripping me up, and I was being bombed by fruit flies and things were coming at me while I was WALKING.

I made appointment to get bangs cut into my hair today. Then I found out it is my left eye vision had changed again and the "hair" in my eye is actually a form of floater from retinal damage or something.

By staring at a white piece of paper and closing my right eye I saw the spider web, closed left eye and it's gone.

Not sure about having this checked out medically. So walking with this tangle dangling in front of one eye is possible, but have to figure out how to negotiate this.

 It took me weeks to figure out it wasn't hair.

Posted: Monday, September 18, 2017 5:14 AM
Joined: 9/12/2013
Posts: 3608

Just remembered ( ) when I was a kid and people used to give us dirty looks we said they were "giving us the hairy eyeball".  wow!

Now I have to get my hair cut because I hate to cancel an appointment as much or more than going to an appointment.


this is off topic but hospice help has actually helped. I found their acceptance of the terminal part of the diagnosis is helping me in ways I did not imagine.

the anxiety waves that hit me - husband and I had best talk ever this past week which showed me where my anxiety comes from. Once I got a grip on my sense of responsibility towards my adult children when I am gone and my anxiety about having enough to live on for keeper and me, and that this is who I am even knowing you can't ever predict the future.

So I am asking for reassurance from everyone and they are giving it to me. Having Hospice opened my small family circle to understanding I am not being "morbid" or a jerk, I am now in process of - if not dying this week - heading in that direction. It isn't a maybe, it got real.

I also found information on the muscle tightness, clenching, the electric shocks, choking, visual and hearing loss, incontinence, etc and how they support people in final stages. The diagnosis took on a more solid form when the nurse asks about these things. 

This is from a hospice group on helping people with dementia:

"What kinds of problems arise in the later stages of Alzheimer’s disease?

Persons afflicted with the end stages of Alzheimer’s disease and their families endure many sources of suffering.  Alzheimer’s patients in the end stages often have moderate to severe pain, profound weakness, muscle spasms and contractures, choking and difficulty swallowing, incontinence of urine and stool, inability to empty bladder or bowel, weight loss, severe agitation, and severe skin breakdown. "


when I read this, those things became less scary because Hospice has a plan to cope with them. 

Posted: Monday, September 18, 2017 7:54 AM
Joined: 9/30/2015
Posts: 1155

Honey I send you hugs and Reiki because it is what I do especially when I do not know what else to say.. You have my respect and love....
Posted: Monday, September 18, 2017 10:49 AM
Joined: 5/20/2014
Posts: 4408


I am going to try the white paper with both my eyes. Pretty brilliant you figured out this on your own! Once again its confirmed there is little guidance from Dr's and having to figure out science of dementia and impact on body on our own and from one another. 

 I knew something was wrong with my eyes all along however, I did not connect it to brain until I heard your story. I'm noticing now that many still objects appear to me to be moving. The animal statues really get me.

 I don't know about the bugs I see outside but the majority of the bugs I see in the house are not real because I look for them and can't find them. I see them flying/crawling by or toward me and then poof they're gone!

There's no point in going to eye Dr when one of the 5 neuro-opthalmologist in the country gave me no advice and told me eye's test normal and it's the brain that's not connecting to vision. 

I walk Bubby my dog in morning and at night. Things moving are scarier at night. The dog senses my tension on the night walks and it makes him jumpy and paranoid.

Posted: Monday, September 18, 2017 8:40 PM
Joined: 2/24/2016
Posts: 1096

Alz, so glad to hear hospice is helping you.  Sounds like you are finally getting the validation and comfort you need.

I know about the vision problems and the screaming in the car.  My poor husband has had to endure it for sometime.  I try very hard to grit my teeth and not yell, but the foot on the dash and the arms flying up at times as if we are about to crash is involuntary and can not be helped.  He understands and usually takes it in stride.  I love car rides, but not in a lot of traffic.  Old country roads and empty highways is my preference now.  

No more eye appointments for me either.  Was told several times that my eyes are fine.  It is my brain, but no suggestions from any of what I can do that would help.  Sad, but true what llee said.  We find most of our help/advice on here, not from our doctors.

I was wondering about "the skin breaking down" as a part of this process.  Could that be the cause of our constant rashes?  Mine is back.  It broke through the gabapentin that I was taking that seemed to help.  My dose was doubled, but rash still here.  Anyway, your comment alz just got me thinking about it.

Hope you like your hair cut.  I never seem to care for mine, until it grows out some and I trim a little here and there.  Don't know why I bother.  Should probably just try to cut it myself, lol.


Posted: Tuesday, September 19, 2017 7:40 AM
Joined: 5/20/2014
Posts: 4408

I saw a web w/o the paper last night with some floaters moving about. I think it was my left eye (forgot to close one eye). It's not there this morning. I have a friend with detached retina and she has floaters all the time. Retina or brain?
Posted: Friday, September 22, 2017 8:41 AM
Joined: 9/12/2013
Posts: 3608

L lee -

I think one eyed problems likely the eye, loss of bilateral perirpheral vision likely the brain.

Last night I went out at midnight with the dog who ate chicken left on stove, I never go out at night because I  have no night vision. But thank goodness I did, I saw lightening bolts and flashes. Not in the sky, in left eye. so as far as I know I could have the old dried out retina peeled off and left eye blindness is on its way.

So to see dark floaters look at white paper, relax eyes. If you try to "look" at the floaters they race away.

I covered my left eye to see what it would look like if there is no repair for this. really small visual field. For now I can learn to accommodate this but since you are young and working maybe you should check with an eye doctor to make sure they are transient or if they can be helped with ????

love to all!

Posted: Friday, September 22, 2017 9:52 AM
Joined: 12/3/2016
Posts: 374

I have decided to try one more opthomologist.  Like others have said car rides are miserable for both of us.  In addition to fuzzy vision in my left eye I am now having a great deal of trouble focusing with both eyes.  I am also getting very light headed and dizzy much of the time.  Not sure if it's related but am going to try one more time and see what happens.

My best to all



Posted: Friday, September 22, 2017 2:47 PM
Joined: 4/22/2017
Posts: 335


Please go see a retina specialist (or at least an ophthalmologist). Floaters are usually normal and they occur more often as one ages. Floaters accompanied by flashes (usually in the periphery) or shading similar to a curtain being drawn could be a medical emergency.

I may be new to Alzheimer's but I consider myself a pro with floaters, LOL. I have had two retinal tears. Each were accompanied by floaters AND flashes. I have had both repaired. Although I have never had a detachment I now have a partial macular hole in my right retina. I don't know how that came about but it is being monitored by a retina specialist. Meanwhile my father (the one with Alzheimer's) has macular (there's that retina again) degeneration in both eyes so he's partially blind.

You do NOT want to be blind AND have Alzheimer's, especially when the blindness is preventable.


Posted: Sunday, September 24, 2017 4:12 PM
Joined: 7/30/2013
Posts: 6064

I'm fairly an expert in floaters since I've had them since I was a pre-teen due to extreme nearsightedness. There really isn't a cure for them aside from eye surgery. I had a vitectomy in 2012 due to a vitreous tear in my left eye. I already had a sizable floater in my right eye. The one in the right eye goes up and down and the one in my left eye went right to left - like a windshield wiper. Driving became a dangerous proposition for me. 

It took nine months, but I finally talked the opthalmologist into it. I was sedated and he carefully cut into my eye and cut out the floater. It was still partially attached. Then he drained all the vitreous fluid and replaced it with saline solution. I had to wear an eye patch for a day, then I had to use three types of eyedrops four times a day for weeks. 

And then, within six months, just as the opthalmologist predicted, my cataract acted up and I had to have that removed too - both eyes. I see much better now, but it was quite an involved process. 

So, yes, see an opthalmologist if you're up to it. If you can't, you'll just have to learn how to live with it. You may not want to go through eye surgery at this time. 

I also have a small macular hole in my left eye due to the extreme nearsightedness. Nothing can be done about that. 

Posted: Monday, September 25, 2017 8:13 AM
Joined: 5/20/2014
Posts: 4408

If I'm not mistaken I think Alz+ was dx by an opthalmologist when they could find nothing wrong with her eye's? Neuro-opthalmologist conducted extensive testing and found no pathology with my eyes either. 

I relate to the term slogging through days. 

Went to musings board for some light topic reading and was dismayed and thrown through a loop when someone brought up the topic of incest and pedophilia! It was out of context and unwarranted. It made me so angry! Ugh!

Posted: Monday, September 25, 2017 12:24 PM
Joined: 9/12/2013
Posts: 3608

I can't imagine having surgery on my eyeball but thanks to everyone for suggesting I have it checked.

The loss of peripheral vision is 50% of being a "bad passenger" in cars. Try sitting in back seat and do not look at traffic. It stopped the fighting for us and was just by luck I figured that out.

I went for an eye exam for glasses and one thing was looking at a lit up sheet of squares and there was a large section with missing lines. From that he sent me to opthamology doctors who found the tunnel vision, who sent me to neurologist who said "You have ALZ and visual changes are in your brain."

The floaters are a retina issue. I will have them checked and decide if I want to have surgery and more recovery.

Have Hospice nurse coming Thursday and glad because I got skin wear and tear from sitting in bed for days.

I am wondering whether to treat anything now. Will post when I get eye doctor's take on this. Meanwhile the fruit flies attack.

Posted: Monday, September 25, 2017 5:26 PM
Joined: 9/12/2013
Posts: 3608

 we called the eye doctors clinic and they said come right in for eye exam. they did imaging and stuff and said it is old gel floating and an old retina, not detached.

if I see a CURTAIN COMING DOWN or more intense lightening streaks, to come in immediately.

we are both relieved and it was worth the visit to know for sure. he said the streaks and dots will irritate me probably for rest of my life.

ok, well going to bed now.

thank you team of the board!