Re-Entry After a Brief Vacation

I'm back.

After 3 years of not truly getting away, I was able to run off (due to friends and their gracious hospitality) and spend time away to clear my head, heart, soul, and psyche.  It was long overdue, but delightful.

During my absence, Mom still was able to get out.  My cousin called and wanted to know if Mom could attend a lunch with her late brother's widow, who was at their beach house in Cannon Beach.  I could think of no reason, and was delighted at the thought.  I suggested that our other cousin pick her up and drive her to the lunch, which would also be attended by her cousin, Alice, who is also diagnosed with LBD, as well as her daughter who was calling.

The day of the lunch her obliging cousin, who picked her up, forgot to check her out.  Now, remember Mom knows the key codes to get out of the memory care facility, so they check on her hourly to ensure she hasn't snuck out.

My phone was on silent mode, and fortunately I saw the two messages in short time.  I called to discover that Mom had disappeared, and my first thought was the lunch.  Unfortunately, I had also failed to alert them of the event.  The director of the unit had reviewed the surveillance tapes and saw her cousin come in and then leave with Mom, so by the time I had called the mystery had been solved.  Whew!

Mom said she had a wonderful lunch with them.  She stated her cousin, Alice, looked weary and tired.  There wasn't a great deal more she would/could share.   But she did say it was a wonderful time and they really enjoyed their visit.

Today I saw Mom for the first time in two weeks.  Her voice was quiet and she seemed meek, but not frail.   I brought a letter from her friend, Nadya, which I had received after returning.

We chatted and then went to Mass.  The conversation wound around from the lunch, to her moving this evening, to some of the people in her cottage.   There wasn't a great deal of focus.

During Mass she was feeling nauseous, and at times she was confused.

It wasn't until we went to Jean's for lunch and she'd had some juice that she began to feel better.   We had lunch, and then Jean's son, Terry, and his daughter arrived.  Mom was suddenly alive and listening and involved.  It was a very good thing to see.

After we left, we went shopping for her mandarin oranges and sodas.  We also needed to get her some chocolate bars as she stated she was craving them.

She also wanted to get a box of cards that would be appropriate for many people - but she couldn't describe them.  She has note cards, a box of greeting cards for all occasions, stationary, etc., so I'm not quite sure what she means.  Hmmmmmm.

When we returned to the facility I took the apples out of the fridge (she doesn't like the effect they have on her) and put them out for anyone who wanted them.  I then unpacked the oranges and the sodas and put them into the fridge.  When I left, Mom was tired, but quite content.  She wanted me to stay but I knew she needed to nap.

What did I notice during my visit today?

She is shuffling off and on as she walks.  She is not slowing, but she isn't very quick, either - her walking has a goal, which eggs her on (this is a positive).

She is drowsy.

She spoke of me in the 3rd person as we drove.  She giggled when I asked her who I was, after a point, and she stopped - obviously it was a realization that I was next to her, but she didn't realize I was who I was.

Her voice is much quieter and her tone more docile.

She is easily confused, wondering if this is that, or whatever.  She is also easily distractible.  

Her sense of smell is nearly non-existent at this time.

She has troubles between dreams and reality (thinking my brother had phoned her that he'd be seeing her this afternoon, when he is actually sailing somewhere in the San Juan's or Vancouver Island and the Gulf Islands there).

She still believes my father and grandmother are somewhere around (she wanted us to pick my grandmother up before we went to Jean's, but I told her she was unavailable - that she said something about being out of town.  Mom was confused as to why she would leave town, but accepted it).

Oddly, after a vacation, this is much more easily processed.   I'm hoping to see her again this week, if possible, before the weekend.  Let's keep that hope alive.

A Trip to the Neurologist! or - What's the Diagnosis, Doc?

Today we went to see the doctor.

We went to see a good doctor.

We went to see the Neurologist!  We went to see a neurologist who knew what he was talking about with Lewy Body Dementia.  And we found him at Portland Adventist Medical Center.  Brent Burroughs, MD gave me solace.

I picked Mom up, and she'd been waiting.  I'd already collected the information on her medications, etc, from Mike, the leader of the cottages.  He also asked me to not allow Mom to use the keypad to go out anymore.  See, she's now under hourly supervision to ensure she doesn't try to tip-toe her way out.

We found the Neurology Department and walked in.  My goodness there were a lot of forms to fill out!  Thank goodness I had the presence of mind, earlier in the year, to download the Family Medical History app for my phone and computer.    I had already entered all the information necessary - including her insurance, blood type, medications, allergies, etc., so that was right in front of me!  It also partners with an ICE app (In Case of Emergency) that is on my phone, and  can be used in those unmentionable situations we try to avoid.

We went into the room with the nurse, who took Mom's blood pressure.  She hated that!  It really seems to hurt her arms!

As we waited in the interim, I walked over to the chart and began explaining, in a condensed manner,  to Mom why we were there.  After I finished, she looked at me and said, "You know that gardening lady needs a couple of green watering cans."

I couldn't believe that my mother was now one of those people - at least for the moment.

Then came the doc.  Nice guy.

   "So, why are you here?" he asked.

   Mom decided it best for her to speak.  "Well, you see my hands used to break out, but because of the cream I'm using they're getting better."

He nodded then looked at me.

"We came because I need to know if we're still working with LBD, and if we are, then are we on the right track."

"What leads you to believe she has LBD?"

"Well, Highline in Tukwila diagnosed her a year ago April, and I've been doing my reading and some research on it, and it fits.  I just need to be sure we're doing all we can at this time.  Maybe scans?"  This last question was with hope, but after he explained that while 'those with great means' might pay out of pocket for this, it would not be easily affordable for the other 95%.  I was a little disappointed.

"She also has tremors, and then there are the hallucinations."

He asked about these, and we spoke through Mom's vigorous protests and demands we stop maligning her reputation.  I reminded her about seeing my brother while she napped the other day.

"What?  That never happened.  See? You're putting words in my mouth!"


He understood.  Fortunately, he seemed relieved I knew something about the ailment.

He began asking Mom questions and she was off at the races!  She had a lovely time describing Port Angeles, Sequim, her life, and other titbits of information which mostly had nothing to do with the questions.

He took out some sheets and began quizzing her with pictures.  She couldn't see all the images that to me were obvious.  But overall, she did fine - she did see some and created stories around them.

Then there were numbers, and memory tests.  He asked her to list off as many animals as she could in a minute - she listed about 18.

He then conducted some coordination tests.  She was having a blast!  She was complaining about his demands, but I could see she loved the attention!  She giggled as he took out the reflex hammer and bopped her a few times.  He had her fingers clapping while the other arm was engaged with his moving it.

The brain is amazing - isn't it?  It allows us to do so much and we use it so little....

He did tell us that the only real way to know if she had LBD was through autopsy.  Well, that was a shocker - not that I didn't already know this, but that he said it right in front of Mother!
"What did he say?" she asked.
"He said the only way they could know was through brain surgery," I said.
"Oh.  No, you can't do that!" she laughed.

He saw the tremors, we discussed the hallucinations, he looked at the cognitive pieces.  He concluded that we were on the right track.  He did say that the seroquel might need to be upped in dosage, though, eventually.

One thing that surprised me, though, was that Haldol, which was used primarily with AD and brought out the Parkinson's in LBD patients, was pretty much the same thing as seroquel, but different, if you catch my drift.

I was a bit anxious as we left and Mother was in a happy mood, talking about what a wonderful doctor we'd seen, and how he seemed rather intelligent.  I was a little worried that our talk about the hallucinations would carry over into lunch, as Mom is well-known to hang on to grudges for decades (centuries if that were possible!).  But she'd completely forgotten!

This was not a good sign.

I'm not really sure what we really accomplished, except validation.   He also brought up End of Life issues, but it wasn't the time.

Mom seems to be declining quickly, but I'm not sure why.  She's struggling for the right words, but she's never short on them.   She's more confused and her mind isn't latching on to much any longer (except secret key codes for the exits and entrances to the center...Hmmmmm).

Hopefully, I'll have more information on LBD later this week.  Now I need to do some mulling. 

A Day With No Pictures....

Today was bright and sunny, and it seemed to bring out the little dickens in Mom...

First, when I arrived, I brought in a couple of bags of summer clothing for her to "magically appear" in her closet while we were out.  I owe those staff members!

We talked about her neurology appointment on Tuesday.  She wanted to know why she needed to see a neurologist.  I explained we needed to know more about what was wrong with her thinking processes, and this was the next step.  She looked pensive, then spoke, "What's wrong with the way I think?  I think I think rather well!"
   "Well, you think things are ... Mom, you have hallucinations or believe things are real that may have been in a dream."
    "Like what?" she demanded.
    "Well, like when you believed you'd moved from Port Angeles to Cedar Hills and then back again one week."
    "I never thought that.  Don't make up stories!"
    "Do you remember when you were kidnapped and taken to Alaska, but escaped and were hiding out in the house?"  She looked incredulous.
    "What???!!!!  You're talking nonsense!  I don't ever have those issues!"
    "Do you remember thinking there were people in the house when there weren't?  The time you were held hostage?"
    "You're just full of baloney!  Stop that!"
    "What about thinking Larry was dead because of his leg, and you thought it was the same thing that killed your brother and your mother.  Larry's still very much alive!"
    "Well, he does have a leg issue."
     I decided to try another route.
     "You know your brother had Parkinson's, right?!"
     She looked focused.
     "Well, it would seem that the same alpha-synucleic acids that cause Parkinson's may also be present in your brain, but in a different way.  We need to verify that and to see what we can do.  Remember you take those medications, and they help."
    "Yes, I take the medications because they tell me to."
    "And those medications they tell you to take help you think and remember."
    "But I don't have hallucinations!"
    "Okay."  I was leaving it at that.  She looked pensive, but then brightened up.
    "You know, the oddest thing happened yesterday."
    "What was that, Mom?"
    "I was napping, and I was half asleep, when your brother came in - very tired - and crawled into bed with me."
    "Excuse me?!  That sounds just a little kinky .  Why would he do that?"  I knew this was a dream/hallucination, ironically being told just after she told me she didn't have them, but I was nauseously curious.
    "Well, he just crawled in, and he was very tired, and he slept until about 5:30, then he got up and went home."
    "What did he say?"
    "Nothing.  He just slept then left!"
   "Are you sure it wasn't a dream?"
    "No.  He was here."
    "That makes no sense.  Why would he come all the way here to take a nap?"
    "Maybe he was tired."
   Well, that was enough for me!

When we were leaving, Mom told me she'd figured out the "corridors".  I wasn't sure what that meant, as there is a half-door with a hidden latch, and I thought she meant she'd figured out how to open it - something she'd known how to do for months, so I found this odd, but intriguing.

As we walked to the end of the corridor to the security-locked door, Mom had a look of mischief on her visage.  So, I asked if she wanted to try the combination.  She did, and she did it.  Nolo Problemo!  Uh Oh!  She knows the code!

Well, then we went out and she had a spring in her step.

At Mass, the man in front of us was dealing with his toddler and was sitting sideways with his arm draped over the back of the pew.  Something caught my eye.  I was Mom flicking her fingers (in the manner we used to flick people's elbows off the table while growing up) toward his arm.  I looked at her in horror!  She giggled.  I began laughing.  She kept it up, giggling more and more.
    At one point I whispered in her ear, "You're on the fast track to Hell, woman! You'd better stop!"
    She looked at me with her devil grin, and then started flicking her fingers faster and faster, closer and closer to his arm.  I reached out to stop her from actually executing the act.  She looked at me still smiling and softly laughing. "I wasn't going to really do it."
    "I don't know about that."  This made her laugh internally and we had to find our focus for the sermon.
    After Mass we went to Jean's house for croissant-sandwiches of turkey breast, and soup.  Mom seemed more herself, but more like her new self, rather than her old.  She was chipper, but slightly askew.
   We left and headed for Fred Meyer's to get a new battery for her watch.  While I did that she went to the loo.  When I came out of the jewelers, I waited for her near the restroom corridor.  And I waited.  And I waited.  And I waited.  I was a little anxious that she'd wandered off...and then I spied her waaaaaaay down the other way trying to walk through the check out line in the wrong direction.
   I stopped her and she told me I was supposed to be in the jeweler's.
   "And where were you going, then?" I inquired.
   "To find you, " she responded.
   Okay.
   So we bought her a couple of eyebrow pencils with a sharpener, and four bottles of gummi vitamins, which should last a couple of months.
   We headed home while she marveled at the tress and the lack of taste in color some people had for their homes.
   We arrived and she was quite tired, but happy.  She was under the assumption I'd stay for a glass of wine and dinner, but I explained I needed to get home.
   Jean had given Mom some roses from her garden, and we put those in a vase and in the window -to inspire and beautify her room, she said.
      She was happy.  She was content.  She was putting on cooler clothes that I had brought her when I re-entered the room after checking in with the aid. She made no mention of how the clothing had magically appeared, but apparently decided it was all natural!
    I kissed her ta-ta, told her I'd be back Tuesday morning and we'd have a bit of a day then.
   A simple, sweet, but memorable day.
  

The Differences Between AD, LBD, and PDD - Part One --- In a nutshell

Okay.  Bear with me.  I'm overloaded with information and I'm just beginning to understand and sort out what I've learnt.    Piece by piece.  Step by step.

I've been feeling rather ignorant, at sea, drifting in the wind, or what have you, about what the causes are of Lewy Body Dementia.

Exactly what do the experts say it is?

Interestingly enough, they now are determining that it actually falls in the center of the spectrum between Alzheimer's Dementia (AD) and Parkinson's  Dementia (PDD).

Wow!  Say you!  However can that be?

Well, after doing my own research, and reading many articles and watching several videos and webinars (many of which I will spare you, but they do have marvelous information!) I'm beginning to feel excited and stimulated about learning more and more and more!  It's actually fascinating.

Dr. Lewy

Lewy Bodies were first noted by Dr. Frederic Heinrich Lewy in 1912.  He didn't notate, though, that the neruonal inclusions (Lewy Bodies) were typically included in the mid-brain structure called the Substantia Nigra, which controls voluntary movement, regulates mood, and produces the neurotransmitter, Dopamine.

Substania Nigra Diagram

With Parkinson's Disease, and Huntington's, the lesions seem to predominate on this portion of the brain which leads to a loss of Dopamine to the Striatum portion of the brain.   This is also called The Forebrain.  This section of the brain is responsible for learning, motor control  and a substantial number of other cognitive functions, which are then delivered to the ganglia for more processing.
(Whew!)


First of all, Dopamine is produced thoughout the brain.   Dopamine serves as a neurotransmitter  and is a precursor of other necessary materials used by the brain, such as epinephrine.


With Lewy Bodies, The inclusions (or Lewy Bodies) are more predominant among other areas of the brain, including the Cerebral Cortex, where most of the brain's functioning occurs.  However, they are still present in the Striatum.  This prevents the brain from delivering the Dopamine to the other relevant parts of the brain - but as I can see, it's not so much there as it is elsewhere.  Here's where I have to tell you I'm fallible.

With Parkinson's, as the disease progresses, there is a  greater and greater loss of Dopamine in the Striatum.  And, the loss appears to be more asymmetrical.

With Lewy Bodies, the loss of Dopamine is similar to that of PD patients in the Striatum, but the loss is considerable compared to those with Alzheimer's, or AD.

Also, the loss of Dopamine in LBD patients in the Striatum is more symmetrical than that of PD patients.

The use of PET and SPECT imaging can reflect the differences in Dopamine loss between AD patients and LBD, but not between LBD and Parkinson's.

Now, AD patients also show a greater number of Corical Protein Beta-Amyloids, or Plaques, which are folded proteins on the brain, which in this case are abnormal, and cause the dementia, along with tangles of neurons.
    Those with LBD showed these same Cortical Amyloids, but to a much lesser degree, while they are even fewer in those with PD.

Beta-Protein Plaques

Now, even with PD, having these cortical Amyloids creates motor and cognitive disfunction, so you can imagine that with AD and LBD these deposits would afflict greater harm.

Here is where I will cease for now.  I will continue to build on this in the near future, as time allows.  

UPDATE: Mother has her appointment scheduled for the Neurologist who is well into the LBD investigations on Tuesday, 6/10.  Hopefully we will be well-armed with questions, concerns, and some semblance of knowledge!

At this point, Mom is confused, and bounces back and forth with her thoughts.

She latches on to a thing, such as her watch, and keeps coming back to it.  The staff has also found she is obsessed with her hand cream that was prescribed to her.

Perhaps her latest agitation is because of another resident passing this past week, and it was someone Mother knew in the past, as well as someone her friend, Nancy knew as well.

We don't know.  But we are realizing more and more that routine is vital!

1. Also, please note that there were several sources used in today's blog, many of which I linked to for your continued education.  
2. I do owe thanks, as well, to LBDtv and SNMMI for their wonderful (but terrible sound) webinar on Molecular Imaging from 10/12/2012, with Dr. Martijn Muller.