Friday, February 28, 2014

Seth Rogan Speaks

Comedian Seth Rogan has become an Alzheimer's advocate since meeting his wife Lauren Miller.  Lauren's mother has early on-set Alzheimer's.  In 2011, Seth and Lauren went public with their Alzheimer's story and began their advocacy work.

To help fund Alzheimer's research, they founded the Hilarity for Charity organization which uses comedy to raise funds.  By April of 2013, they had already raised over $400,000.

Earlier this week, Seth spoke to the Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies advocating for more funding for Alzheimer's research.

He is funny, compassionate and totally on point.  He spoke for about 6 minutes and brought his experience with his mother-in-law to the discussion.

It is a shame that only two Senators remained for the speech.

Wednesday, February 26, 2014

APOE E4 and Infant Brain Development

Here's an eye opener for you.  The primary genetic variation which predisposes an individual to Alzheimer's, APOE E4, appears to impact the development of the infant brain.  Let that settle into your thoughts for a moment.

A gene variant known to increase a person's risk for Alzheimer's (late-onset; not early-onset) appears to measurably change how the brain of an infant with the variant develops.  The volume of areas of the brain typically impacted by Alzheimer's in these children is lower than the volume of the same areas in children without the E4 variant.  Additionally, the amount of myelin, insulation on a neuron, is lower in these children.

The study is preliminary and has looked at a small set of infants.  The study was just recently published and it will be decades before the findings can be fully correlated or confirmed with the onset of Alzheimer's.  Additionally, while individuals who have the E4 variant are at higher risk of developing Alzheimer's, most will not develop the disease.

This study is fascinating because we may have a way to identify some individuals who may need additional observation and earlier intervention because of the structural brain differences which can be detected so young.

Tuesday, February 25, 2014

My Little Gimme Pig

One of my hobbies is crochet.  I have made a couple of things for Lyn including a pair of mittens.  I share pictures of all I make with Mom and Lyn and it is not unusual for Lyn to comment that she wants something that I've made.  When someone says "I want" a lot, that's a gimme pig.

This week, I completed a rainbow stuffed animal for my youngest.  Lyn decided the toy was cute and declared that I should make her a rainbow shirt.  Mom told Lyn that it would be too scratchy and the conversation was ended.  When Mom relayed this to me, I offered to find a rainbow t-shirt to send her instead.  It turns out to have not been necessary.

Lyn has already forgotten about the conversation or her desire for a rainbow anything or another crochet item from me.

Monday, February 24, 2014

IT Support

Over the years, my husband has provided computers and IT support to Mom and Lyn.  When Mom's computer is upgraded, Lyn gets the retired model.  She typically only looks at pictures or plays solitaire or a bowling game.

Last week, Lyn was struggling with her computer.  When she would turn it on, it would try to boot up.  Within a minute, however, it would shut down.  She complained to Mom.  The computer did the same thing when Mom checked it out.  Mom told Lyn to leave it until IT support would be available. She mentioned a desire to talk with my husband about it during our Skype conversation.  Her other option is a neighbor but he was unavailable.  Lyn was content knowing that one of the two men would be willing to help.

A day or two later, Mom decided to dust in Lyn's room while she was at day hab.  As she dusted Lyn's desk, she discovered that Lyn's computer was unplugged.  Mom plugged it in, waited a few moments and then tried booting up Lyn's computer.  It worked!

Mom was pleased and told Lyn, "I have a surprise for you.  I fixed your computer."

Mom writes: OMG, I wish you could have seen her face.  She turned red and informed me that I didn't know about computers, "only (the men) do."  I told her to calm down and not use that tone of voice with me.  "Come here and I'll show you."  We went back and I turned it on and stood back.  She was not a happy camper.  I showed her the problem was a cord was unplugged.  "Yes, I like it that way."  It was very, very difficult not to burst out laughing.  I told her that was why it wouldn't stay on and she was to leave it plugged in.

When we spoke this weekend, Lyn informed me that she's decided to just go to Best Buy and buy a new computer the next time hers won't turn on even if it was because she unplugged it.

Wednesday, February 19, 2014

Daily Challenges

Some days are more challenging than others.  Some weeks are even more challenging.  This seems to be one of those weeks.  Yes, it is only Wednesday.

On Monday, Lyn had speech therapy for the first time in three weeks.  She had been ill prompting a cancellation.  Her therapist was ill next.  Fortunately, both were able to meet this week.  Lyn really struggled with the session.  She was unable to convey any of her exciting weekend to her therapist.  She had slept and it was gone.  When they worked on her reading, Mom noted a decline in words she could recognize.  Mom watched as Lyn was able to identify the word "dogs" on one page.  When the page was turned and the word was available on another page, Lyn was no longer able to recognize it. Without seeing the book, I can only speculate that Lyn may have been relying upon other clues on the the page, such as a picture, to help her identify the word.

She spent Monday afternoon with her respite provider.  When they returned home, Lyn was tired and confused.  She could not remember how they had spent their time.

On Tuesday, Lyn's team meeting was held and Lyn's attitude was peeking through.  Her team got a bit of a flavor for Lyn that they don't often see.   Lyn snapped her answers, glared at Mom, was hateful in her tone and withdrawn when not speaking to anyone directly.  She's convinced herself that the staff leave the house after the meeting to go sit in their cars and laugh at her.  Assurances that they do not went no where to ease her mind.  When they left, Lyn went into full paranoia mode.  Only Nikka could calm or redirect her successfully.

Yesterday afternoon, Lyn called to Mom from the bathroom.  "I don't know what happened."  Her period had started but she didn't know what it was.  Her last one was about 2 weeks.  It lasted only about 3 days.  She's had one hot flash that we know of.  She may have had more.  We're, honestly, hoping that menopause is starting.

Here's to hoping that the week gets better.

Tuesday, February 18, 2014

Our SAGE Results

Last month, I shared with you information about the SAGE tests which are available for all of us to take at home.

There are four interchangeable tests which are designed to help identify individuals with cognitive impairments.  Mom, my husband and I all decided to take the tests.  Any score greater than a 17 is considered normal and nothing to worry about.  We all had identical scores of 20 out of a possible 22.  There was one question which we all answered in the same manner and believe our answer to be correct.  However, since it didn't match the test exactly, we've decided to not award ourselves those points.

The tests are free, readily accessible and easy to execute.  The great thing is that we can take them once or twice a year on our own and bring them forward if we ever see a score dip below 17.  As time progresses, we'll also have built up a collection of the tests which will help identify our baselines.

I am not concerned that taking the tests even twice a year will provide us with practice which can skew our test results.  We plan to rotate through the tests.  Additionally, the skills being tested are ones that we use on a daily basis without even realizing it.  Finally, the specific tests have been found to consistently provide an indicator of difficulties no matter how much the test taker tries to perform at their best.

Monday, February 17, 2014

Worked Up

Lyn was wound up yesterday when I spoke to her.  I never really figured out why she was wound up.  She, of course, denied it.  However, I did learn that she had a busy weekend with a few things settling in past the dementia.

She spent the day at the zoo on Saturday with her respite provider.  At some point in the day, they had come to a stop at an intersection and her respite provider spotted four young boys trying to start a fire up against a school.  911 was called immediately.  Lyn told me "The cops went this way and the firetrucks went the other way!"  It was quite exciting.  The boys stamped out the fire and scattered when they heard the sirens.  Lyn got to watch the whole affair.

On Sunday, she was excited because they went to the craft store to buy a birthday present for a cousin.  While there, she found two stamps to add to her collection.  They were letters she had not yet acquired and she's so proud she wants to show them off.

The Bosque is also on fire again.  The fire is huge and she could see the smoke from the middle of the city.  She seemed more excited about it than agitated or worried.

All in all, I think her entire weekend was enough to ramp her up.  Hopefully, she was able to settle enough to sleep.   She has a busy day today scheduled.  There's no day hab due to the holiday.  However, she and Mom are visiting the cousin to help celebrate the birthday.

Friday, February 14, 2014

Valentines All Around

Lyn and Mom sent Valentines Day cards to my children this week.  Lyn signed the cards before they were put in the mail.  On Thursday, the cards had arrived here and Lyn didn't remember signing them.  She asked Mom "I need to sign my name?"  It took a little time for Mom to figure out what she was talking about.  Once she did, Mom tried to explain that Lyn had signed her name to the cards for my children and that the cards had already been mailed off.

It didn't compute.

Mom decided to redirect Lyn from her confusion by giving her an early Valentine.  Lyn was happy and the redirection worked.

Lyn was prepared and had a Valentine ready for Mom as well.

May you have a smile today.

Thursday, February 13, 2014

Snow Days

This winter has brought a number of storms to the East Coast.  We are currently under the sway of winter storm Pax and are anticipating as much as a foot of snow.  Our school system announced its closure last night.  This made me think back over the early years with Lyn.

Through the time I was in elementary and Lyn was in middle school, we walked to the end of our street to our babysitter's house for after school care.  The sitter took care of us when school was out as well.  Snow days were no exception.

When I was old enough to stay home without the need for constant supervision, Lyn stayed with me.  Snow days, summer days, vacation days were all the same unless we were at our grandparents or off to camp.  We would stay home together and watch tv and squabble.  Those were the days she perfected her ability to annoy me to distraction.

Mom worked for an escrow company at the time and there was no such thing as telecommuting.  Mom was a single parent and our snow days didn't mean that her employer closed.  So, she still had to get to work on time.  Fortunately, the snow days in Albuquerque were few and far between.  We had more delayed starts to school than cancellations.

We didn't even own a snow shovel.  We'd take a broom out and just sweep the snow off our step and walk when necessary.  

Wednesday, February 12, 2014

The Pittsburgh Compound and Florbetapir

The Pittsburgh Compound is a radioactive compound which was developed to successfully cross the blood-brain barrier.  It is significant to Alzheimer's research because it attaches itself to beta amyloid plaques for a short period of time before it clears out of the brain.  The half life of the compound is 20 minutes.  This allows for the plaque tangles to be seen by the use of a PET scan.  It took over 10 years of research to identify the compound and it has been available for use in research since at least 2004.

The compound allows for the tangles to be identified in living patients.  This is significant because Alzheimer's was previously only fully diagnosed through a post-mortem exam.  The hope was that the compound would aid not just in diagnostics, but also in researching other compounds which could be made small enough to cross the blood-brain barrier for the purpose of clearing out the tangles.

In the years since, that research has not yet resulted in a cure.  However, another compound has been created.  It is Florbetapir.  Florbetapir is similar to the Pittsburgh Compound in function however, it is based off of a different chemical and has a radioactive half life of 110 minutes.  It received FDA approval for use in diagnosing Alzheimer's in 2011.

Tests have continued on the two compounds to determine if they really were imaging the plaque tangles.  The final confirmation required the brains of previously imaged patients to be physically examined in a post-mortem exam and the plaque tangles counted.  Those count where then compared to the results of the scans done with the the Pittsburg Compound and a second set of scans done with Florbetapir.

A year ago, an article was published with the findings that both sets of scans were found to be consistent in their results with the results of the autopsies.

Tuesday, February 11, 2014

It is All a Matter of Perspective

When Mom and Lyn were at the circus, they encountered an individual Lyn knows.  The individual is wheelchair bound and was with a care provider.  They were seated in front of Lyn, Mom and their lovely neighbor who had joined them for the show.  Off and on through the show, Lyn and her friend would comment back and forth to each other.

Before the show was over, Lyn's friend and the care provider left.  Mom turned towards their lovely neighbor and commented that "It must be difficult to care for special needs."  Her neighbor gave her an incredulous look before laughing.  It took a moment to realize that she too cares for an individual with special needs.

Monday, February 10, 2014

Circus 2014

Several weeks ago, the representative from the Shriner's Circus called Mom to see if Lyn would like tickets to this year's show.  The tickets were graciously accepted and they were able to attend yesterday's matinee.

As they approached the venue, two clowns approached and called to Lyn by name.  They had been prepped before the show and knew who they were looking to greet.

Lyn was excited to visit with the clowns and didn't seem in any way surprised that they knew her name without having been previously introduced.  During the show, the slapstick antics of the clowns got her laughing to the point that she had tears streaming down her face.

Their seats were front and center allowing them to have a great view of the entire show.  Shortly after they arrived and settled, another clown brought the Grand Potentate over to meet Lyn.  He welcomed her and thanked her for being their special guest at the show.  Lyn was very flattered and pleased by the attention.

She settled in with a box of popcorn and watched the show.  The trapeze and the motorcycle acts were her favorites.  Mom spent as much time watching Lyn's enjoyment of the show as she did watching the show.

Afterwards, they went for a late lunch at the Wendy's were Lyn used to work.  Two of her former customers were there and they recognized her.  They came over to speak to her and tell her how glad they were to see her.  She was thrilled!  She didn't recognize or remember them.  That didn't matter.  They knew her and she felt special from their kind attention.

We spoke late in the afternoon.  She knew there would be a message from me on the phone when they got home.  She was right.  She insisted on telling me that they were "not out gallivanting around town."  I laughed at how earnest she was.  Apparently, circus attendance doesn't count as gallivanting.

Thursday, February 6, 2014

The Forgetting

PBS has produced a documentary about Alzheimer's called "The Forgetting: A Portrait of Alzheimer's."  It is intense.  It is worth watching.  PBS has made the full documentary available here

Wednesday, February 5, 2014


There's enough improvement in Lyn that she was able to go to day hab yesterday.  Mom knew she's be up for the day when her mood was hateful and yet her speech pattern had normalized.  The infection has definitely moved into her chest though.  She describes it as feeling like there's a bubble she just cannot cough up.

I called early in the evening to check on her.  She had a good day but was exhausted.  When I spoke to her, she had just finished dinner and was already fading fast.  She couldn't make a decision.  She didn't know if she should watch Wheel of Fortune or if she should take a bath.  Mom suggested that she take a bath since she didn't feel good.  Lyn was in the tub moments later.

The phrase "I can't make a decision" is her new normal.  It used to happen once in a while.  Now, she really cannot make a decision and seeks guidance.

Tuesday, February 4, 2014


I've been sitting at the dining table off and on for a couple of days planning out this year's effort at growing a productive garden.  My husband and I have a couple of raised vegetable beds, flower beds, a couple of bee hives and a small plot of land which we seem to be slowly turning into an urban homestead.  As we're gearing up to start planting this year's crops, my goal is to only introduce new plants onto our property that either provide us with food or provide the bees with nectar and pollen.  That may sound like a crazy limitation but it really isn't.

So how does this foray into gardening have any connection with Dementia Be Damned?  Well, in looking at flowers, I remembered that the language of flowers was popular in the Victorian Age.  Flowers have been used as symbols through the eons.  Flowers are still used for symbolic speech today.  This made me wonder what flower is best suited for marking Alzheimer's.

I've seen Forget-Me-Nots, a lovely little five-petaled flower, used more and more recently in connection with Alzheimer's.  Traditionally, the meaning of this flower is everlasting love or remembrance of those who died in war.  Using the Forget-Me-Not in connection with Alzheimer's makes sense when you think of it as love and remembrance.  However, for me, it remains firmly associated with weddings and romantic love.

In poking around a bit more, I came across the Strawflower.  It is also known as the Everlasting flower because it tends to hold its colors and shape for a very long time when it has been cut.  Traditionally, it means "never-ceasing remembrance."

Syringa, also known as Lilac, means love or memory.

In Japanese tradition, the Red Spider Lily represents "never to meet again" or lost memory.

I've been contemplating a flower tattoo in recognition of how Alzheimer's has touched my life.  Perhaps, I'll get a small posy instead.

Monday, February 3, 2014

On Antibiotics

Late last week, Lyn took a sudden turn for the worse.  Within an hour, she went from her usual self to clearly ill.  The next morning, she didn't go to day hab and Mom took her to the doctor.  Lyn was diagnosed with a major sinus infection and an upper respiratory infection.  She's was prescribed a round of antibiotics.

The congestion is so intense that the oxygen appears to be making it worse.  She sneezed during the night and the mess was so bad that Mom had to strip her bed and scrub the headboard in the morning.

After three days on the antibiotics, she's still not turned the corner.  She's napped each day and stayed home.  She's home again today.  When I spoke to them yesterday, Mom was concerned because she was sounding like the infection was moving deeper into her lungs.  Hopefully, it won't.

Her speech patterns has been impacted.  Mom describes the change as though Lyn was speaking from her 5 or 6 year old self.  Her words are few and her sentence structure is shot.  We're hoping this is just a result of feeling poorly with the infection.  We're concerned that her speech may not recover well when she's over this.  Unfortunately, illness can result in dramatic changes and set back with Alzheimer's patients because the brain just cannot recover as it once did.

When Lyn wasn't up for going out on Saturday with her respite provider, her respite provider came by to wish her well and bring her some balloons to cheer her.

Hopefully, she's feeling better today.