Thursday, February 28, 2013

The Check Up

Mom recently had her annual check up with her doctor.  The doctor was worried because Mom's heartbeat seemed abnormal. The doctor scheduled Mom for an echo stress test because, as a care giver, she's under the kind of stress that leads to heart attacks or strokes.  Mom told her doctor that she felt fine and that her heart was beating its normal beat.

Mom had to reschedule the test because her Trigeminal Neuralgia had flared up for the second time in less than 3 months.  The TN pain would have interfered with the test.

On Monday, her TN was still active, but manageable.  She and the technician decided to go ahead with the test.  He started with an EKG which indicated again that she had an abnormal beat.  Mom told him that it was her normal beat and had been her normal beat her whole life. He smiled as if to say "sure".

He followed the EKG with an ultrasound and then had her get on a treadmill. He explained what would happen and they wanted to get her up to 132 beats per minute.  151 would be better but they weren't expecting that rate given her TN flare up.

Six minutes later, there were stopping the test.  Mom's heartbeat had been brought up to 151 and a second ultrasound was performer.  Her heart functioned perfectly.  There was no sign of the abnormal beat being a potential disaster or a danger in any way to her.  Later in the day, her doctor's office called to tell her the results of the test were normal despite her abnormal base beat.

Mom was a little miffed to have to be subjected to the testing.  However, I'm glad her doctor did it and made sure.  Sometimes, caring for the care provider means ignoring the statements of "No, really, I'm fine." to make sure that she really is fine.

Tuesday, February 26, 2013

Visualizing Deterioration

Here is a short video which may help you visualize what Alzheimer's does to a person's brain.

Monday, February 25, 2013

Cases of Early On-Set Alzheimer's

Early on-set Alzheimer's is usually caused by a genetic mutation which runs in families.  There are less than 500 known families in the world with one of the three known genetic mutations which lead to the disease.  However, there appears to be a bit of a growing number of individuals being diagnosed with early on-set Alzheimer's.

This raises a number of questions.  Is better diagnostics leading to more individuals having their symptoms recognized earlier?  Is it actually early on-set Alzheimer's or another form of dementia such as Lewy Body Dementia?  Are there more causes to early on-set  Alzheimer's than just these three mutations?

It is too early to say and the trends will have to be watched and patients will have to be tested to see if they actually have Alzheimer's and if there are more causes to it.

Friday, February 22, 2013

Bowling in 2013

Lyn's been bowling quite well the last couple of weeks.  She's actually been going to the alley angry and her scores have been higher than they have been in a while.  She was showing an upward trend in her scores.

This week, she had a good afternoon and wasn't angry when she went bowling.  There was a 30 point difference between her two scores.  Meaningful?  Probably not but worth noting at least.

When we were talking over the weekend, she was bragged about last week's scores.  I assured her that if she and I were to bowl against each other that she would win.  She's a better bowler than I am on any given day.  I told her that she's always been better at sports than me and that it was one of the things I like about her.  I like that she's good at sports.  I like that we're different.

It was interesting to watch how she reacted to the conversation.  At first, it was like she wanted to prove to me that her scores were good.  There was a challenge and a chip of attitude.  When I praised her skills and assured her she was better than me, she settled in and seemed mollified.  I'm not sure if she was really understanding what I was saying when I was talking about what I like about her, but she knew I was saying something nice that she couldn't really counter.

We'll see if a similar conversation is repeated this weekend.

Thursday, February 21, 2013

Entering a New Stage?

I believe we may be entering a new stage with Lyn.  I think she's transitioning from mild to moderate Alzheimer's.  As I mentioned yesterday, her language faculties are decreasing.  Unfortunately, her moodiness and hostility is increasing.

She's always been temperamental, but we could previously identify causes to her moods.  This is becoming more difficult to discern.  Take, for example, her speech therapy session on Monday.  Mom writes:

"Lyn was in a bad mood and it showed.  Her thoughts were all over the place, it was difficult to follow any train of thought.  If I said anything Lyn would snap at me, contradict me, then glare.  So I hushed.  Her speech therapist tried to get her to stretch to get blood moving.  Lyn had eaten a bowl of oatmeal which usually helps her mood.  Finally, after the struggle, the speech therapist cut the session short by 10 minutes.  Lyn went into her room and the therapist looked so confused.  I told her this didn't kick in until after she had arrived.  I apologized.  

The therapist has another dementia patient and has noticed that a few days after he finishes antibiotics his mood is ugly.  Lyn had finished antibiotics a few days earlier for her sinus infection and we wonder.  When our neighbor got into the car Lyn was very quiet.  After dropping Lyn off at day hab, our neighbor commented that she seemed "off".  I told her about earlier and we agreed these will come into play more and more often."

If Lyn is moving into the moderate stage of Alzheimer's, she's entering a very difficult stage.  I cannot say if one stage is harder on her than another.  However, this stage is particularly difficult for the care givers because of the increased aggression and confusion.  This is the stage where there may be hallucinations, paranoia and delusions.  If an individual is going to become physically aggressive, it is at this point in the progression of their disease.  She may begin to get confused and believe that a person is someone else entirely.  Illness will exacerbate her symptoms and increase the recognizable rate of decline.

I know what I wrote above sounds clinical.  That's my writing voice.  I worry deeply about them both.  If Lyn is entering this stage, I hope she passes through it quickly.  

Wednesday, February 20, 2013

Let Me Put It Another Way

On Sunday, Lyn made sure we had our weekly Skype conversation.   We got through the regular set of questions about the various members of my household, pets included.  She told us they had purchased their PBR tickets.  She was practically bouncing in her seat when telling me.  When she was done, she sat back to watch and listen while Mom and I chatted.  

I let Mom know about a request for supplies for some of the K9 handlers the U.S. has stationed in Afghanistan.  Lyn interrupted to say that she didn't understand.  What did K9 mean?  She was genuinely lost in the conversation and we quickly explained that K9 meant dogs.  We changed our terms to talk about "the soldiers and their dogs" which she could understand a bit better.  

I don't tend to have a poker face, but Skype is improving that. I have a small window and can see my own expressions which I use to make sure I don't reveal dismay or sadness to Lyn.  The truth is that I was a little surprised that she no longer recognized the term "K9".  Words and their meanings are slipping from her faster than any of us would like.  

When she asked us to clarify the term for her, she stammered and had multiple false starts to the question.  Both Mom and I knew what she wanted to ask and we had to keep ourselves from just jumping in and finishing her thought for her.  She deserves the courtesy of our listening more than we have a need to just get to the next thought. 

After the call, I sent Mom an email asking for confirmation of what I was seeing in her speech pattern changes.  Mom confirms.  She writes:  "This is the new norm I think.  She'll begin to say something and go back and repeat or say "let me put it another way."  Trouble is, she hadn't gotten it out to begin with.  I have quit watching with such a critical eye, it was too much.  I note changes but know it's part of this new life."

Even Mom's lovely neighbor has noticed and just smiles as Lyn tries to wrangle her words into order. 

Tuesday, February 19, 2013

Cheering for the Plummer

Sunday night was PBR night.  Lyn was very excited.  She had her dinner on a tv tray and she was stationed in front of the television where she could eat and cheer at the same time.  She directed Mom to call us to tell us who was competing.

Mom called to tell us the important news.  A bull named Plummer Butt was in the night's line-up.  He's a big cream bull with black spots and a black nose.  Lyn likes him because his name makes her laugh just like Booger Butt did before he retired.  A few years ago, my eldest spent a week with Mom and Lyn and Lyn introduced the child to Booger Butt.  I'm not sure who laughed harder; Lyn or my child.  Lyn wanted to make my child laugh on Sunday by sharing the newer bull's name.

As she ate her dinner, she cheered for Plummer Butt and screamed in delight when he bucked off the rider at 3.6 seconds.  She's already counting down the days until they go to the Pitt for the PBR event in March.  She's excited because they've already bought their tickets.  If you think she's engaged when cheering on the bulls and riders from her living room, you should see her scream herself hoarse when she's at the arena.

(I wondered how long it would be before I actually typed the words "Booger Butt" on this blog.  Now, I know.)

Monday, February 18, 2013

Update on the Human Connectome Project

When last we heard about the Human Connectome Project, it was August 2011 and a lot has happened since then.  They were in the early stages of the study at that point and even though a few images had been released, there was still more to collect.  The project actually began in 2009.

In September 2011, the specialized Connectome Scanner was delivered to Massachusetts General Hospital.  The hospital is a participating partner in the study.  The Connectome Scanner uses diffusion MRI technology to map the flow of water along the neurons of the brain to reveal the internal map of how the neurons connect to each other.

In January 2012, the project released data from the first three human subjects.

In March 2012, the study announced that the structure of the brain is built on a three-dimensional grid-like structure.  It is a surprisingly simple structure of fibers running parallel or perpendicular to each other creating curving boxes.

The studies continue and the Project is making data available.

Additional Information:
The Symphony Inside Your Brain
Human Connectome Project pieces together neural data through brain scans
Scans Reveal Intricate Brain Wiring

Update 2/19/2013:  This article came to my attention after I wrote the above post.
Obama to Back Brain Mapping

Friday, February 15, 2013

Oximetry Review

A year ago, Lyn underwent an oximetry test before being placed on oxygen at night.  Her results were so low, she was at risk of passing away in her sleep at any time.  She's been on oxygen for a year now, using an oxygen condenser while she sleeps.  She was not put on a CPAP machine because she would not agree to a sleep study and the specialist did not believe a mobile sleep study would be sufficient.

Last night, Lyn had to go through the oximetry test again.  It was necessary because she has to be recertified as needing oxygen during sleep.  She was not happy to know that she had to submit to the test.  Yes, The Look came out in full force.  Fortunately, the test is pretty unobtrusive.  She just had to have one finger gently clamped into the oximeter's sensor.  She was not allowed to sleep with oxygen on because it would defeat the purpose of the test.

We should know shortly what the results are and if she is recertified to continue using the oxygen condenser.

Wednesday, February 13, 2013

Three Month Check Up

Yesterday, Lyn had her three month check up with her primary care physician.  It went well.

The doctor did find that Lyn has the beginnings of another sinus infection and has put her on antibiotics to knock it out before it gets worse and knocks her out.  Lyn complained of her ear feeling plugged.  It wasn't.  There's no build up of fluids or wax in her ear.  Lyn also complained of the top of her head hurting still.  The doctor was unable to determine a cause of the discomfort.  She did suggest it could be muscle spasms.  However, as long as there's no dizziness or vision issues, Lyn and Mom don't need to worry about it.  Both issues seemed to have resolved once the doctor checked Lyn over.

After the doctor's visit, Mom took Lyn to day hab.  She came home without her lunch because one of the employees had cooked lunch for everyone.  It was chicken spaghetti.  Lyn typically doesn't like to try new foods.  However, this dish won her over and she enjoyed it, saving her packed lunch for today.    

Tuesday, February 12, 2013

The Mayor

When I lived in Virginia Beach, the mayor of the city was Meyera Oberndorf.  She is a lovely, fiesty lady who really looked out for the city and its denizens.  She was mayor from 1988 until January 2009.  I met her a number of times when she attended events at the college where I worked.  She was always sweet, charming and quite the power house.  I remember when she had a menora installed on Mt. Trashmore.  It was controversial the first year it was in place but she was determined to have the city recognize more than just Christmas.

Unfortunately, Mrs. Oberndorf has Alzheimer's.  The article is long but worth the read.  

Monday, February 11, 2013

The Annual Trip to the Circus

A couple of months ago, Mom received a call from a representative of the Shriners offering Lyn tickets to the Shrine Circus again.  Lyn immediately responded that she wanted to go again.  She and Mom were treated as guests of the Shriner's to yesterday's matinee performance.

It is such a treat for Lyn.  Despite the chaos of the three rings, she's able to calmly enjoy the afternoon.  She reports that her favorite act of the show was the flying motorcycles who were "jumping into the ceiling."

She spoke with every Shriner member she could easily identify and two state police officers.  She thanked the Shriners for their kindness.  She told them and the police officers that she appreciated them and the work they do.  There were lots of surprised smiles all around.

Friday, February 8, 2013

Wound Up

Lyn had a pretty good afternoon bowling yesterday.  Her scores were better and closer together than they were at last week's practice.

Unfortunately, Lyn was a bit wound up.  She had decided she wanted to start buying her lunch once a week.  The staff at day hab have said numerous times that they'd take her anytime she wanted to buy lunch.  She's gone twice now with money and twice been disappointed because other demands have prevented her from being able to get a happy meal at McDonalds.  She gets very mad over small slights and misunderstandings.  To avoid this, she and Mom have decided to just go back to packing her lunch each day.

Thursday, February 7, 2013

Imaging Amyloid

The Society for Nuclear Medicine and Molecular Imaging along with the Alzheimer's Association have recently published guidelines for the use of PET scans to look for amyloid clumps in the brain.  The guidelines outline when a PET scan looking for amyloid clumps is an appropriate diagnostic tool.

The PET scan should not be the only diagnostic method used according the guidelines.  They layout the following simple criteria.  The scans should be used for those showing progressive memory problems, those who have possible Alzhiemer's but are "unusual in their clinical presentation" and those with progressive dementia with an early on-set.  The scans should not be used to confirm Alzheimer's in individuals over 65 years old who meet existing criteria or those who are asymptomatic.

Lyn meets the criteria.

The good thing with the PET scans is that they are non-invasive.  The results they provide can then be taken into account along with the other tests such as a neuro-psych evaluation to help determine if the individual has Alzheimer's or another disease causing their dementia symptoms.

Prior to the release of these guidelines, the FDA approved a radioactive agent called Florbetapir F18 specifically for use with PET scans looking for amyloid.

Additional Information:
PET Scans Helpful; But Not Definitive for Alzheimer's Diagnosis 

Wednesday, February 6, 2013

Working Towards a Vaccine

Last week, it was announced that a research group believes they have found a way to stimulate the brain to work against the build up of amyloid beta proteins in the brain.  Another group announced that they believe that Abeta42, a form of amyloid beta made of 42 amino acids, is the form of amyloid beta which is causing the clumps.  A third group announced last month that they believe the apoE4 protein is the protein which should be focused on to slow down Alzheimer's.

One day, all this research into Alzheimer's and an effective treatment may result in a way to prevent or at least slow the disease.

Additional Information:
The Vaccine Adjuvant Monophosphoryl Lipid A as a TRIF-Biased Agonist of TLR4
Apolipoprotein E

Tuesday, February 5, 2013


Happy 501st!

No, this not about the wonderful people connected with the 501st.  Though we have encountered them at the Rio Grande Zoo.  Imagine coming around a corner after viewing the Polar bears to see Darth Vader and a bunch of Storm Troopers marching along on the opposite side of the green from you.  Not something you expect to see when you're at the zoo.  My eldest and I were pretty excited.  Lyn was not impressed.

Members of the 501st at the Rio Grande Zoo - July 2009

This is my realization that yesterday's blog post the number 500 for Dementia be Damned.  So, today, we'll celebrate the 501st instead.

I don't always look at the stats, but there is some interesting information there.  So far, we've had 22,830 page views.  Google searches, Facebook and Metafilter are the sites that provide the largest number of references here.  The post with the most page views is the one I wrote calling coconut oil into question as a treatment for dementia.

Most of our readers are in the United States.  However, we have regular readers in the United Kingdom, Canada, Germany and France.  I've noticed a growing number of readers originating in Brazil, India and the Phillippines.  Ireland has even popped up on my radar.  Welcome one and all!

So, thank you for reading any of the first 500.  Hopefully, we'll have another 500 more.

(An aside to any members of the 501st who might read this.  Why is Neil deGrasse Tyson not listed in your ranks of honorary members?  This seems like a missed opportunity that should be corrected.)

Monday, February 4, 2013

Ski Bunny

As a Special Olympian, Lyn has competing in a number of different sports.  The sport she's competed in the longest is bowling.  The sport she competed in for the shortest time was gymnastics.  She's also done various track and field events and she skied for a number of years.  In all the sports, however, Lyn   worked hard to learn the rules properly so that she was not disqualified during competition.

When Lyn skied, she raced down-hill; not cross-country.  The rules stated that she had to use the ski poles.  Lyn hated using the poles and strongly objected to it.  She didn't want to use them.  However, her coaches helped her understand that she had to use the poles.  And so, she did.

At the start of her race, Lyn held the poles straight out in front of her.  She didn't tuck they under so the points were behind her.  They were out front like she was ready to joust.  We always worried that someone would be in front of her while she raced and that they would be horribly skewered.  Fortunately, that never happened.

She loves the snow

She may have had an unorthodox style, but it worked for her.  She took a number of gold medals this way.

Friday, February 1, 2013

Evolving Criteria

Did you know that the criteria being used today to evaluate a patient for Alzheimer's are the same ones suggested in 1984.  They were proposed by the organizations which were the predecessors to the National Institute of Neurological Disorders and Stroke an the Alzheimer's Association.   I was actually surprised to realize that 29 years later, we've not evolved our criteria significantly.

In 2011, new guidelines were proposed at the Alzheimer's Association International Conference in a public workshop.  The summary of the workshop is Alzheimer's Diagnostic Guideline Validation: Exploration of Next Steps.

It is actually an interesting and relatively short read.  The summary discusses the challenges for implementing a new set of guidelines.  The biggest of which is answering the question of "how soon is too soon to treat?"  The criteria will be evolving as scientists and doctors work to answer this and other questions.