Wednesday, October 31, 2012

Guess

One of us is in costume for Halloween.  One is not.  I'll let you guess who is in costume.


Happy Halloween!

Tuesday, October 30, 2012

After the Storm


After Hurricane Felix moved on and stopped threatening Virginia in 1995, we were able to resume our vacation plans.  We had planned to visit the Chrysler Museum in Norfolk.  Since the hurricane did not come ashore, we were able to visit without having to contend with downed trees, damaged buildings or flooding.  One thing we did not anticipate, however, were jelly fish.  

We arrived at the Chrysler Museum.  The Chrysler sits on a small inlet.  We walked over to the water's edge and noticed some movement in the water.  The water was packed with jelly fish.  There were thousands sliding over each other in the calm water in front of the museum.  

Checking out the jelly fish
Lyn was fascinated with watching them and we stood there for some time.  We tried to take pictures of them but none of them were ever good enough to show what we were seeing.  

Monday, October 29, 2012

Weathering the Storm

Mom and Lyn are safe and sound in New Mexico.  They are starting to feel the creeping chill of winter coming on, but they are not impacted by Hurricane Sandy in any way other than wondering how my family and I are weathering the storm.  In our Skype conversation on Sunday, Lyn burst into tears when asking if we were adequately prepared and offering advice on having extra water on hand.  I promised her that we would call them each day until Sandy passes to make sure they know we are well and safe.

Mom has been through a hurricane or two in her life and she doesn't like them at all.  When my husband and I lived in Virginia Beach, we went through several.  In 1995, Hurricane Felix  threatened to come ashore while Mom and Lyn were visiting.

Waiting for Felix

It was nerve wracking for them more than it was for us.  Felix ended up staying out at sea and Pat Robertson claimed he had prayed it away.  It was enough of a storm that Mom and Lyn have mostly timed their visits to the East Coast to happen outside of hurricane season each year ever since.

The last significant storm that my family and I experienced before Sandy was Hurricane Isabel in 2003.  It was the last hurricane before we moved further North and further in-land.  It was the first time in years that Mom and Lyn were trying to come in for a visit during hurricane season.  We were without power for 8 days and Mom was seriously contemplating canceling their trip as a result.  I convinced her the power would return before their arrival.  It did.  Just hours before they arrived, the lights came back on and we were able to have our first hot showers in a week.  It was a luxury!

Mom and Lyn are not coming to the East Coast anytime soon.  However, they'll be paying close attention to the news and tracking the storm over the next couple of days, hoping and praying that those of us who are hunkered down in our homes for the duration remain safe and sound.

Friday, October 26, 2012

Oligomers

 Individuals with Alzheimer's have amyloid beta plaques built up in their brains in addition to the atrophy of the brain.  The plaques have been a primary focus of much of the research into the disease.  However, one of the great mysteries of Alzheimer's is how individuals who have lots of amyloid beta plaques in their brain can have normal cognitive functions and little if any atrophy.  When this was discovered, it provided another path of study to examine.

Brain samples needed to be collected from individuals with Alzheimer's disease and those without symptoms of Alzheimer's prior to their death.  The samples from the apparently healthy individuals had to be examined to find those with high concentrations of amyloid beta.  Once those were identified, scientists could then look to see what else was different between the two groups of samples.

Recent findings indicate that there is a difference in the concentration of oligomers in the two groups.  An oligomer is a large molecule consisting of a very few bonded molecules of the same type.  There are many different types of oligomers such as those found in oils, proteins or nucleic acids.  In this case, the oligomers are actually amyloid beta molecules which have bonded together in small groups but have not bonded enough to form plaques.  The individuals who had been diagnosed with Alzheimer's had amyloid beta oligomers in their brain in addition to the plaques.

Just one more piece of the puzzle.


Thursday, October 25, 2012

World Alzheimer Report 2012

Alzheimer's Disease International released the World Alzheimer Report 2012 to correspond with World Alzheimer's Day/Alzheimer's Action Day (Sept 21).  I just found the report today.  This year's report focuses on the stigma associated with  dementia and how dementia is viewed around the world.  In addition to reporting on the organization's findings, the report provides suggestions on how to break through the stigma we face as caregivers as well as individuals with dementia. If you don't want to read the full 80 page report, then check out the executive summary which may be easier to digest at 14 pages.


We've touched on the stigma surrounding dementia in our lives.  Fortunately, what we have experienced is nothing compared to others.

Wednesday, October 24, 2012

Apple Sauce

Every fall, Mom makes apple sauce.  It is thick and chunky and wonderfully spiced.  It was like magic when she would whip it up in our youth.  There always just happened to be too much apple sauce for the prepared jars and we'd have to have the hot apple sauce ladled over the vanilla ice cream which just happened to be in the freezer.  Magic, I say.

It is that time of year and the magic is happening again.  Mom writes:

Last week, I had half of the big bag of apples left from our trip to the Manzanos.  I had been to the grocery store and almost bought the single serving packs of applesauce for her lunch.  I stopped myself when I remembered we have apples.  So, I came home, cut them and cooked them up, peelings included.  She wanted to know what I was doing and I said "Making applesauce."  She looked a little surprised but didn't say anything.  She wasn't to be picked up for Merry Makers until 6pm.  This gave her time to come and supervise.  As they cooked, I prepared the jars.  When I began running the cooked apples through the processor, she "wondered" if I was going to put sugar and cinnamon with it.  Yes, I promised I would. 

When it was done, 5 pints, I did the water bath.  There was about 1/2 pt that went in a bowl for the fridge and I offered a taste.  She took it and a look of shock!!!! "I had no idea you knew how to make this."

Sorry I've never made applesauce.  Well, hadn't made it in about one month.

Tuesday, October 23, 2012

A Sunny Seat

Some days, you just have to set the research aside and enjoy a sunny spot along the path.


Monday, October 22, 2012

DIAN Trial

The Dominantly Inherited Alzheimer's Network (DIAN) is an international group of researchers focused on understanding a genetic cause of Alzheimer's in the hope that their findings can be applied towards those who suffer other forms of dementia.  The network is conducting a study to see if they can identify biomarkers of Alzheimer's from the adult children of individuals who have been diagnosed with an inherited form of Alzheimer's.  The study began in 2009 and will be completed in 2014.

It will be several years before the study is finished and more years before the results can be integrated possible treatments.  However, the researchers and study participants hope to help find a possible treatment for the disease.

Additional Information:
Catching Alzheimer's Early: The "Dian" Trial
Investigational Drugs Chosen for Major Alzheimer's Prevention Trial

Friday, October 19, 2012

Team Meeting

As I mentioned yesterday, Lyn's team got together to discuss the TEASC recommendations.  In attendance were Lyn's speech therapist, two ladies from day hab, two case manager, the nurse from the agency which provides the case management, Mom and Lyn.  

They started off the meeting by saying that the TEASC report is considered an official document that bears weight in Lyn's case management.  They then went through all of the findings and recommendations and discussed each one.  

When they discussed the TEASC's finding that Lyn has an anxiety disorder such as agoraphobia, the team was a bit surprised that Mom stated she believe that one to be incorrect.  She pointed out that there have been multiple statements from Lyn's care providers that she has atypical Sundowners.   A therapist who has known Lyn for over a decade  happened to call last week to check on her and also disagrees with the agoraphobia suggestion.  

The team has agreed that Lyn should be seen by a geriatric neurologist who may help them better understand the course of her Alzheimer's progression.  (Mom has already called to get Lyn scheduled.)  They also agree that there's no reason to repeat an MRI.  However, they are seriously considering repeating the EEG and the neuropsych evaluation within a year to compare to the ones done a year ago.      They will all look for opportunities to increase Lyn's exercise in a manner to which she will cooperate and participate.  Mom will continue attending the Alzheimer's support group monthly.

The primary recommendation for which there was disagreement was in the use of medication to slow the progression of Lyn's Alzheimer's.  Lyn does not want to take medication.  Period.  Full stop.  Mom doesn't see a reason to slow the inevitable.  Lyn has a terminal condition for which there is no cure.  Several members of the team stated that the meds would help keep Lyn as high functioning and independent as possible.  However, the meds do not work for everyone and carry significant risk of serious side-effects.  

The truth of the matter is that early on-set Alzheimer's is aggressive and is progressing with Lyn as we speak.  Most recently, Mom has realized that Lyn has had a significant hygiene change that is impacting daily life.  When Lyn goes to the restroom, Mom has to send her back 2 to 3 times to go clean herself properly.  If she's menstruating, Lyn wouldn't even change her pads until bath time if she wasn't reminded to do so every couple of hours.  

It is hard to say where Lyn's capacity will be in 6 months.

Thursday, October 18, 2012

The Stay Calm Book

On Tuesday, Lyn's team gathered together to have their monthly meeting and to review the TEASC recommendations.  During the meeting, Mom was telling them about the weekend trip up to Jemez and how Lyn got nervous at the end.  Mom stated that she doesn't want Lyn to dictate the agenda 100% of the time which is why she didn't turn around when Lyn said she wanted to go home.  Lyn decided to interject and came up with a great idea.  I'll let Mom explain.

Mom writes:
She interrupted, in a loud voice, "you know what we could do?"  Everyone turned and looked at her as I asked "What?"  She said, "We could make me a book with pictures where we are and I could look at it while we drive."  You could all but see lightbulbs go off over all of us.  I said that was an excellent idea.  "What things would you like in it?"  She wants pictures of where we are going.  I said I was glad someone was smart and could think of such a great idea.  I got The Look.  Her speech therapist told her that was one of the best ideas she'd ever heard.  We decided on Sunday we'll go find a book. We will pick out pictures and glue them in it.  When we go someplace, she can look through the pictures and get an idea what to expect.  She said "It will calm me down."  There was a picture in the paper of trees turning colors and she wanted that one cut out since it looked like the trees in Jemez. We will go thru some photos as well.


Wednesday, October 17, 2012

Digital Clock Drawing Test

Researchers at Georgia Tech have come up with a digital version of the clock drawing test.  The clock drawing test has been around for some time and is a pretty quick and easy way to see if a patient has a cognitive impairment.  Their research (PDF) lead them to write the ClockReader System to allow an individual to take the clock drawing test without the need for another person to be present for the administration or evaluation of the test.  This will allow patients to be tested regularly for signs of disease progression.

Tuesday, October 16, 2012

The 26 Mile Yard Sale

Lyn accompanied Mom and their lovely neighbor up into Jemez yesterday.  They wanted to see an arts and craft show and initially didn't know about the 26 mile yard sale until a lady mentioned it at the craft show they attended recently.

The yard sale began in San Isidro where you turned off the highway to go north to Jemez.  They didn't know what to expect and found yard sales at houses every mile or so.  The 26 mile yard sale was a coordinated event to bring folks up that route where they may not normally go looking for a yard sale.  They didn't stop because they were looking for the art show at the Jemez visitor center.  The visitor center had several tables set up for the artists.  At one table, Mom commented to her neighbor that the pottery for sale was actually Acoma in origin.  The artist confirmed saying she was from Acoma but lived there in Jemez.

After viewing the items up for sale, they went on into Jemez springs and stopped at a little coffee shop for lunch.  The place was busy and had wonderful food including bison burritos and tortillas that were red from having tomatoes incorporated into them.  As they left the coffee shop, Lyn commented that they didn't need to continue on.  She was ready to return home.  Mom let her know that they were going to continue North at least to Soda Dam which Lyn has visited numerous times in her life.  Lyn agreed to go that far.  As they drove past the dam and saw the people climbing on the rocks, Lyn told Mom she could turn around now.  Mom deferred a few more minutes because she and the neighbor were enjoying the colors around them.  Jemez has such red soil, the leaves were changing and the sky was that distinctive blue for which New Mexico is known.

Mom started looking for a place to turn around shortly after passing the dam.  She had glanced back and noticed Lyn was getting nervous.  By the time they had retraced their steps and gotten back on the highway to return to Albuquerque, Lyn was shaking.  They were home by 2 in the afternoon.

It seems like Lyn's retracting from the world a bit more.  Previously, she would not have gotten nervous until late in the afternoon.  Now, she's less willing to travel out of Albuquerque unless they will be returning home right after lunch.  She's also spending less time out with her respite provider.  Her new normal has her coming home about 7pm instead of 8 or 9 and being ready for bed right away.

Monday, October 15, 2012

Another Area Games

On Saturday, Lyn competed once again in another area games.  She and Mom had to be out at location by 7am and had to factor in the traffic from the balloon fiesta.  By taking a more Westerly route, they were able to avoid the balloon related traffic.  As they were driving, they got to watch the dawn patrol confirm the conditions were right for mass lift-off and the first wave of balloons raise into the sky with the sun.

Mom watched each game, praising each frame.  Mom comments, "Oh, the changes I could see in what she did & how.  I praised each frame.  She stood sideways, didn't look to see where to throw it and just threw.  But she had fun and is proud of herself and that's all that counts."  

Lyn had three games to bowl and did quite well.  She scored a 134, 97 and 114.  Her scores were good enough to bring in a second place ribbon!  She had fun and was excited to participate.

They were done by 10am and were looking for a meal.  By noon, they were back home, heading for a nap.  It was a great morning for Lyn.

Friday, October 12, 2012

Indecision

I spoke with Mom and Lyn the other day on the phone.  They were checking up on a couple of cold in my household.  I heard several moments of confusion in Lyn's voice.

It turned out both the washer and dryer finished their cycles at the same time.  Lyn didn't know what to do.  Mom had to walk her through the steps to remove the clothes from the dryer before transferring the load from the washer to the dryer.  Mom passed the phone to Lyn and Lyn spoke to me while Mom initiated a new dryer cycle.

Multiple demands for her attention now overwhelm Lyn.  Mom has to break the tasks back down to more manageable units for Lyn to process.  Two months ago, the two machines shutting down their cycles at the same time would not have been too much for her.

Thursday, October 11, 2012

Bell Tower Supports

In the spring of 2002, Sacred Heart Parish in Albuquerque requested a two I-beams from the remains of the World Trade Center buildings in New York.  The church was preparing to build a new bell tower and wanted to incorporate the beams into the building.  It was apparently the first such request for salvage pieces to be incorporated and memorialized in a new structure.  Many new structures have since been built incorporating September 11 steel.


When the beams arrived in Albuquerque, they were set up in a parking lot across from the church so that visitors could come and see them.  Mom and Lyn went one afternoon before they were incorporated into the new bell tower.  Lyn didn't understand the significance of the beams and was just along for the opportunity to be out and about.  When Mom reached out and touched the beams, Lyn commented "You look so solemn."  Mom was deeply moved even though her companion was not.

Wednesday, October 10, 2012

Solanezumab

Earlier this summer, pharmaceutical company Eli Lilly announced their results from phase III trials of their drug solanezumab.  Yesterday, they announced that their findings have been independently confirmed by ADCS.

The results are not what Eli Lilly had hoped to announce because the drug did not achieve the goals Eli Lilly set for the tests.  Solanezumab, a monoclonal antibody, was targeted to slow the rate of neurologic decline as a result of Alzheimer's Disease by removing the build up of beta amyloid.   However, there was a slowing of the cognitive decline noted in trial participants who had mild Alzheimer's.  In other words, solanezumab may actually have a moderate clinical benefit.

Additional Information:
Mixed Phase III Results for Solanezumab in Alzheimer's Disease

Tuesday, October 9, 2012

Like New

Yesterday morning, while waiting for speech therapy to begin, Mom and Lyn got to watch the balloons fly towards their house.

A large blue balloon landed in the field about a block away from their house and Lyn was just beside herself with excitement.  She took a picture.  The passengers in the balloon disembarked and more loaded up from the chase crew vehicles.  A few minutes later, the balloon lifted off and continued on its way.  Lyn wanted to know if they knew anyone who was on the balloon.

The balloons flying over the house were a great distraction for Lyn.  She couldn't focus on her therapy session until Mom lowered all the shades.  They were all around the house.

After therapy, they had to drive over to day hab.  There were still several hundred balloons in the air.  Lyn was so excited that she was shaking in the car ride over.  She kept pointing out all the balloons that she was spotting.  Mom says the delight in her face, the dancing of her eyes was like someone who had never seen the fiesta before.

Most mornings, Lyn looks out the patio door to count how many balloons are up.  Typically, there are anywhere from 2 to a couple of dozen at any day of the year.  Lyn's seen the balloon fiesta nearly every year of her life.  She's had hundreds of balloons fly over the house.  This is true of the current home, my grandparents home and the home where we grew up on the other side of town.   So, it is not like she's never seen this.

It is good to know that the balloons still evoke such delight and excitement in her!

Monday, October 8, 2012

On the Go

Lyn has been on the go this week.  In addition to day hab, she had her regular bowling afternoon and did quite well.


During one of the day hab activities they decided to go bowl a single game.  They hadn't really planned it in advance and Lyn wasn't prepared with her own ball or shoes.  She was angry and did poorly.  It was the first time one o the other day hab attendees had beaten her.  He was elated!

The weekend ended up being busy as well.  The International Balloon Fiesta has started and she's been able to see the mass launch on Sunday.  (Saturday's was scrubbed due to weather.)  She will be attending the special shapes balloon glow later in the fiesta.

Lyn, Mom and their lovely neighbor also attended two craft shows.  Lyn had hinted that should anyone want to go out to lunch, she had two $5 bills and a couple of $1 bills and could pay for herself.  She's subtle like that.  They went out to lunch and she was very happy.

Friday, October 5, 2012

In Peak Shape

A couple in their 80's has climbed Mt. Kilimanjaro to raise funds for the Alzheimer's Society of British Columbia.  Their efforts have raised more than $24,000 as a result.  They were part of the Ascent for Alzheimer's team which raised more than $210,000.



What an amazing feat this couple and their team mates have accomplished!

Thursday, October 4, 2012

Picking Pumpkins

It is October already.  Fall is here and the leaves are starting turn.  The pumpkins in my yard are ready for being cut off the vine.  I've harvested two already and will harvest a third this weekend.  Lyn is not into gardening though she will help out from time to time.  She does, however, enjoy the occasional day trip out to a farm or an orchard.


Lyn has gone pumpkin picking more than once.  She doesn't go looking for the largest pumpkin or the one with a great side to hold a good jack-o-lantern face.  She likes the round ones that are not too heavy.  She also won't go very far into the field because she doesn't want to have to carry the pumpkin back very far.  Regardless, she enjoys herself and picks a nice pumpkin.

Wednesday, October 3, 2012

LABrainS

The Louisiana Aging Brains Study (LABrainS) is also known as the Pennington Study because it is being conducted by the Pennington BioMedical Research Center.  The study seeks to track the cognitive status of 2,000 Louisiana residents who are 60 years or older with no signs of cognitive decline or symptoms of dementia.  Participants are reviewed annually to see if any dementia symptoms or cognitive changes can be detected early.

The study is a long term study and results are starting to be announced.  It appears that Louisiana has a higher rate of dementia than other states.


Additional Information:
How's Paul: One year after first Pennington evaluation

Tuesday, October 2, 2012

Break in Routine

Breaks in routine are very hard on Lyn because she relies on consistent activities in order to know where she is in her day and what she can anticipate coming up.

Lyn's respite provider has had her car in the shop for the past several days and has been unable to take Lyn out as they normally are scheduled to do.  Mom has sought out daily activities more than normal as a result.  They have gone out to an early dinner, taking their lovely neighbor to one of my favorite restaurants.  They drove out to an orchard in the mountains to pick apples.  They even went out to breakfast at Tim's Place after getting their flu shots.


Despite providing a daily activity, Lyn has asked multiple times each day about her respite provider, the provider's car and when they would be back on schedule.  She's ended in tears on their way home from dinner with the neighbor.  Mom had to work very hard to keep Lyn from going into an anxious state on their way to the orchard because it was further out than the directions seemed to indicate.  The further they drove, the more worried Lyn became.

Lyn knows they should be back on schedule by Thursday and she's counting down the days.  So is Mom.

Monday, October 1, 2012

Questions Over Dinner

Last night, as my family and I were sitting down to dinner, my eldest suddenly asked "Why does Aunt Lyn still treat me like I'm little?"

I wasn't expecting that question.  However, Lyn is her own answer.  I explained to my eldest that "Aunt Lyn's brain is damaged and the damage is growing.  To Aunt Lyn, there's a part of her brain that remembers how she treated you when you were younger.  That's the you that she loves and knows.  She isn't treating you like you're younger to insult you.  She treats you  like this because that's all she knows how to do."

My eldest was wading through a day's worth of consequences for poor choices and really didn't get to see or speak to Mom and Lyn when I was having our weekly Skype conversation.  When my eldest came in to tell me that one task was done and ask what was the next chore on the list, Lyn clued in very quickly who I was talking to off camera.  She called out a sweet "Hello" to my child.  That's all she did.  However, puberty has kicked in and my child was already feeling sensitive because both my husband and I had to lay down the law.  I really don't think the issue is with Lyn in this case; but with my child who is trying to grow and claim more independence.

After my explanation, my eldest asked for confirmation with "Aunt Lyn's brain is dying, right?"  I confirmed that, essentially, that's the case.  My youngest nearly panicked.  "Aunt Lyn's dying?!"  It was the first time my youngest had considered that as a possibility.  My youngest is only now clueing into the permanence of death and is very focused on that as a topic because of our dog's recent death.  I had to adjust my answers and quickly to calm my youngest down.  I switched to reminding my youngest that "Aunt Lyn's brain works differently than yours does and hers is not working as well as it used to work.  Yes, her brain is dying.  But!  She's not dying today and we still have time to see her more."  "Next week?  Next month?"  my youngest queried.  "Aunt Lyn's not going to die until you're older.  You don't need to worry right now."

My youngest looked to my eldest for confirmation.  My eldest nodded sagely and supported my statements with "Aunt Lyn's OK today.  She's not going to die for a couple of years."  My youngest accepted this assessment and returned to the food on the plate.

I'm never sure what's going to be asked over dinner.  I'm just glad a crisis was averted.