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. 

Moving Forward....????

Ah.  The sweet smells of Spring.

As I recall, last year, at this time (I wasn't blogging then) Mom was in her first full month at St. A's.  She wasn't happy.  She was convinced she'd been hijacked by my two oldest brothers, and her furniture was, as well.

Mom at lunch on Monday.  She wasn't thrilled about the photo op - can you tell?

There was confusion, but moreover, she was as angry as a swarm of bees about her furniture being in her room.  She stated quite often and clearly, that she would prefer it go back "home" and she'd be content to sleep on the floor.  Well, we couldn't let that happen.

We learnt, too, that too many activities with the family made her somewhat grouchy and demanding.  Remember, we were all in the learning stages of the illness and her condition, as well.  Some of us were exhausted from the emotional and physical stress of dealing with the matters at hand, and, of course, having to deal with this situation.

Mom was shuffling and stooped as she walked.  She complained about her right side and shoulder being quite tender and shooting pains going up and down.  Vicodin wasn't working very well, and we were having some troubles getting the doctor to see her (especially in the fall, when the doctor decided not to make in-house calls anymore).

As to her medications, Mom was having an issue with the vitamin C pills - they were large, and she complained they were a bit dry.  Now she has gummies - and she enjoys them.

It would appear she is growing better.  But appearances can be false!  Oh! Fie! Fie! Fie!

I was able to find the following link to a pdf from the National Institute on Aging,  - it's free, and it's on LBD, symptoms, medications, etc.  Even though I've been reading a great deal on this form of dementia, knowing there are so many out there who've not realized it exists, it really puts things together in a concise, easy to understand manner.  

Here it is: Lewy-Body-Syndrome-Pamphlet


Now, you can download it, print it, whatever.  It does a great job of explaining.

As I was perusing and poring over the text, I had to think about the changes in Mom over the year.

1.  Hallucinations - These are still occuring, but they are quite benign compared to earlier before diagnosis.   The medications seem to have lessened them to memories, or at least dreams that seem to be real for her.  A Positive!

2.  Shuffling & Walking - Since she began Physical Therapy, and the Massages are Deep Tissue now, she is more able to get around without the stooped posture, and the pain has lessened, although the complaints are there.  Her massage therapist reports that she complains of pain in certain areas which are consistent from week - to - week.  This is also a positive, but the pains will probably grow with stiffness as the disease progresses.

3.  Troubles Swallowing - This is now growing more evident.  At first, as I stated above, she had some issues with the pills.  She still seems to have some problems, but the staff puts some pills in with pudding, which helps her swallow them with more ease.  I tend to give her a milkshake or ice cream which makes her face light up while she swallows them.
     Yesterday, at lunch, after the dentist visit (they were so wonderful!  They didn't even charge!), I took her for a drive around the area and then to a pub.  She was having difficulty swallowing her hamburger.  Once in a while, this would be normal, but she had problems with most of the meal - and drank a great deal of water and iced tea.  This gave me pause, as I hadn't thought about this issue much in the past.

4.  Stooped Posture - Mom is gaining weight - probably from lack of hearty exercise she had grown so used to with her hiking groups, and her daily walks.  But she seems to be standing taller now, and I believe this is owed to the massages and the P/T.

5.  Mood Changes - Mom has been quite pleasant!  This isn't to say she wasn't a warm-hearted person before, but she seems to delight in the small things, now, that she would have poo-poo'd before as nice, but not important.  It's quite interesting to take her about the city where she tells tales of childhood antics, her parents, friends, etc.  Much may be true, but it's a way for her to relate.
    Mom grows stubborn and churlish when her routine is changed - so when the staff goes on vacation she isn't too charmed about that.....
     She does have her serious side more as usual, though.  Now, it's all about moving her furniture back to her home; yet she does call St. A's home.   She has laughed a little more than I recall in the past, as well.

6.  Capgras Syndrome - Nope, not yet.  This is where the patient is convinced someone close to them is an imposter and not really who they say they are.  There are ways to handle this, but each person is different - luckily, not on the list of things to deal with yet.

7.  Blood Pressure - Mom's blood pressure remains stable.  She does take medication this, and enjoys adding the numbers.  She hates the squeeze of the band, though.  I mean, she HATES it!

I believe that's enough for now.

Do please read the pamphlet, though.  It's actually quite complete, and makes me ponder as I read the other books.

Hopefully, Mom will be able to continue to hold off the progression, but for how long, we know not.