Is it a dream?  Is it real?  Are there one of them or two?  Do you see that?  Where did it go?  Who are those people?

I can’t begin to imagine how difficult it must be to sort out all the messages that Mary Ann’s visual cortex is sending to her awareness of what is around her. It would be one thing if all the messages were confused.  That would be horrible to experience.  The insidious nature of Lewy Body Dementia is that there is not just one consistent pattern of processing reality.  Someone with LBD or in Mary Ann’s Case PDD [Parkinson’s Disease Dementia – a Dementia with Lewy Bodies] can be absolutely clear and lucid and sharp mentally one minute or hour or day and virtually unable to comprehend where she is or what is being said to her the next minute — no exaggeration, the next minute.

The online group of caregiving Spouses of those with Lewy Body Dementia often contains posts from someone who is constantly searching the landscape for studies on LBD and related matters.  Coincidentally, the day after the appointment with the Ophthalmologist about Mary Ann’s eye problems, there was a post containing the notes from a presentation by Swaraj Bose, MD, a neuro-ophthalmologist at the Gavin Herbert Eye Institute, UCI.  Here is the purpose of his talk according to the Support Group Leader, Vera James: “His main reason for speaking with us was to give us a fair idea of the eye problems and why do the eyes behave in the way they do in Parkinson’s/PSP/Atypical Parkinson’s and what the caregiver can do.”

You can imagine how pleased I was to see that timely post. What happens is that the Lewy bodies, sort of like the lesions that build up from cholesterol, build up on neurons.  With LBD and PDD, they often attach themselves to the cells in the Visual Cortex. That is one of the ways LBD and PDD are different from Alzheimer’s Dementia [AD]

The notes from the meeting included this comment: “Visual perception is defective in probable DLB. The defective visual perception plays a role in development of visual hallucinations, delusional misidentifications, visual agnosias, and visuoconstructive disability charcteristic of DLB.”

Here are part of the notes:

Common eye complaints:
#1 – Related to disturbance of down-gaze PSP.
– Difficulty in coordinating eye movements while reading even if their vision is normal, especially through their bifocal glasses.
– Difficulty in eating because they cannot look down at their food on the plate.
– Difficulty in going downstairs and stepping off curbs.

#2 – Related to lack of convergence/ fast and slow tracking- Parkinson/PSP/ Atypical PD. (Note:  Convergence means to bring the eyes together)
– Difficulty in focusing, words run into each other.
– Hard to shift down to the beginning of the next line automatically after reaching the end of the first line.
– Inability to quickly move eyes up or down.
– Inability to track moving objects or maintain eye contact.
– Double vision. One eye sees one thing, the other eye sees another and the brain brings them together. Kind of the way 3D glasses do. When you have double vision, the brain isn’t bringing the eyes together to get the one vision.

#3 – Related to vision disturbances- Parkinson/ PSP/Atypical PD.
– Difficulty in focusing/blurry vision/visual hallucinations. Visual hallucinations can be in all of these illness. Some visual hallucinations can be from to much medication, but it can also be from a lack of dopamine in the cortex where the signal is fallen and gives false images and causes these visual hallucinations also. So not all visual hallucinations are psychotic. Other things that can also cause visual hallucinations are benadryl and OTC cold meds. They can also cause spasm.
– Changes of reading glasses at a quicker intervals.
– Decreased in contrast sensitivity (difficulty in distinguishing shades of gray) and color perception.

#4 – Eyelid abnormality
– Difficulty in voluntarily opening their eyes (apraxia)
– Forceful eyelid closing (blepharospasm) .  This is treated with botox.
– Decrease in the rate of blinking (3-4/min vs. 20/min)

#5 – Dry eyes
– Burning sensation, redness, watering, itching, excessive tearing, rubbing of eyes, blurry vision.
– Double vision with one eye.  Usually results in ‘ghosting’ of images or shadowing of images.

Those notes are almost an exact list of Mary Ann’s visual problems. The eyelid issues have been pronounced for a long time.  Often she just has not been able to get them to open.  We have learned how to walk together with her eyes shut with me holding her tight at my side.  Sometimes we stumble around a bit, but we get the job done.

She has commented more than once that she is seeing two of something.  She has asked often to go to the Optometrist to get new glasses.  The burning, redness, dry eyes, excessive watering, rubbing her eyes all happen often.  She has struggled with reading for a very long time.  I can only guess that a number of the problems listed above combine to make reading almost impossible for her.

I have talked often about the hallucinations she endures. In our online group there has been a thread of posts about our Loved Ones losing the ability to discern the boundary between dreams and reality.  Sometimes Mary Ann confuses with reality what she is hearing on the television as she lies in bed at night.  I would turn the television off, but she insists on having it on when she goes to bed.

One problem, described as “down gaze” seems to fit her problem with seeing the food when eating.  One suggestion mentioned in the notes is raising the food to eye level.  Last night I got out an old lap tray and a styrofoam cooler lid to make a platform at the table on which to put Mary Ann’s plate.  It looks obnoxious, but for today’s three meals, it actually seemed to help.  I am not sure how long Mary Ann will tolerate using it.  I will look around for something more aesthetically pleasing to use regularly.  I would love to find something portable enough to use when we are out, although she will probably not allow such a public display.

I plan to ask the Parkinson’s Clinic folks at KU Med Center if they have a Neurological Ophthalmologist on their staff.  One suggestion in the notes was that such a specialist be consulted.  Most of the rest of the suggestions in the notes are things that we already have been doing.

I am glad we ended up getting the appointment with the Ophthalmologist here.  It has helped us understand better what it is we are dealing with.  Again, I am learning more than I ever wanted to know.  I am sure that M.D. degree must be in the mail by now.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

“My supper is gone!”  Since she had not been eating for a while, I asked her if she was done.  Almost all the leftover Quiche from lunch was still there.  The fruit had not been touched.  She said her food was gone.  I turned the plate, pointed to the Quiche sitting there and asked if she saw it.  She said she did.

We had ended up at McFarland’s Restaurant for lunch because of the awkward fit of the retired pastor in the life of the parish from which he retired.  We attended the funeral of one of the people I respected most over the years.  Ann was 93.  Just imagine what she had seen in those 93 years.  In our tradition we do not canonize saints.  If we did, Ann would be one!  She and husband Maury, who died about ten years ago, had helped found the congregation in the late nineteen forties.  I remember a few visits with both of them at their home after I first arrived in the parish in 1996.  Ann was doing with Maury what I am now doing with Mary Ann.  She was doing it with much more grace and humble acceptance than I have demonstrated.  While wishing to spend time talking with the family and close friends, I was not comfortable inviting myself and Mary Ann to the meal provided for them.  With a little more of that gut grieving going on, we headed to McFarland’s for lunch.  I keep wondering how much of this sort of grieving the Pastor I followed suffered in silence without my ever knowing it.  Thinking about that helps me put into perspective what is just part of this step in the journey.  It also surfaces some guilt that I was not more sensitive to his place in life at that time.

The most exciting event that wound some joy and anticipation into that same gut was the gift of the most effective anti-depressant of which I am aware, Lori’s home made chocolate chip cookies — a huge container of dozens of them.  Lori’s thoughtfulness will provide some pleasure for days to come — actually longer if I get some into the freezer before we devour them all.

At McFarland’s Mary Ann worked on the Quiche she had ordered for a full hour after the food arrived at the table.  I offered to help in one way or another at various times, trying not to make her feel as if I was rushing her.  She would not accept any help.  She struggled to get pieces on the fork that were secure enough not to fall off on the way to her mouth.  Toward the end of the meal she did allow me to cut a large piece of watermelon that accompanied the Quiche into smaller pieces.

After that hour, she had eaten about 30% (at the most) of the Quiche and one small piece of the melon, none of the rest of the fruit on the plate.  Of course people had come and gone all around us.  The folks who sometimes come, eat, and play bridge were starting to play at the table next to us.

I left the tip, got Mary Ann into the wheel chair, gathered the take home container and her purse together so that we could pay the bill and head to the car.  When I put the check and the twenty dollar bill on the  counter in front of Walt McFarland, the Owner, he just wished us a Happy New Year and did not pick up the twenty.  He said it was on him.  It is surprising how powerful kind gestures can be when a person is stressed and struggling.  He carried our containers out to the car and opened the doors for us on the way there.  Mary Ann just can’t negotiate styrofoam containers without crushing them or losing them off her lap (understandably) as the chair moves.  As a result, I have the challenge of holding the styrofoam containers (leftover meal and left over Coke in a takeout cup), pushing and steering the wheel chair, getting the doors open and holding them open so that we can get out.  Walt is a good guy!

Mary Ann started trying to get up this morning at 4am.  Between then and about 8:30am there were the usual snacks, little plastic containers of applesauce and tapioca pudding, some commode trips, some arguing about my need for her to stay in bed so that I could accumulate enough sleep between tasks to function during the day.  When we got up, she was determined to make sure we got ready in time to attend the funeral.  She was alert about many things at that point, except that there were things she could not do by herself.  After getting her usual yogurt and cereal to eat with her pills, I wanted her to sit securely in her chair while I showered and dressed. She could not sit.  She was too determined to get ready to go.  She said I could take my shower while she got dressed.  She hasn’t been able to get dressed by herself in a number of years.  I got her completely ready to go, and finally she was willing to stay seated long enough for me to get ready.  We had plenty of time.  We were ready almost an hour before we needed to leave.  By the time we left, she had sort of shut down mentally and physically.  We were able to get to the funeral, but not without much difficulty.

When we got home after the meal, she was not tracking well.  I asked her if she needed to use the bathroom; she said yes.  I was trying to tranfer her from the chair to the toilet stool, and as she was standing up, she began reaching forward and down. I asked her what she was doing.  With a very irritated tone that I could not see what was so obvious to her, she said she was washing her hands.  I don’t remember what I said, but I managed to get her seated and afterward get her to the bed for a long nap.  Just before she awoke, I had opened and shut the front door, leading her to decide that she had missed Zach and Erin coming by with there new baby.  She had been dreaming and, as she admitted at that point, she can’t tell the difference between dreams and reality.  Later this evening she told me that she had just seen me smoking a cigarette.  Other than a few days in college almost fifty years ago, I have never smoked cigarettes.

This has been and continues to be and interesting time in our journey.  There seems to be some transitioning going on for both Mary Ann and me.  I am not sure to where we are transitioning, but I guess we will figure that out as time goes by.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.