Monday, March 31, 2014


Yesterday, Mom and Lyn took two of our young cousins to one of the museums in town.  Museums are not Lyn's favorite choice for an outing.  She agreed to it because she enjoys spending time with the cousins and just going out.  She also agreed because she got to pick their lunch location after the museum trip.  She chose Wendys to no one's surprise.  While Mom and the cousins were viewing the displays at the museum, Lyn would follow along, often sitting on a bench out of the way when she was able.  It was a calm morning.

Afterwards, they returned to Mom's.  The cousins had been invited to stay for dinner and they readily accepted.  This allowed me to see them because we still were able to Skype.  My cousins are very accepting of Lyn and understand that routines are very important to her.  They said a quick "Hello" to me but occupied themselves by playing with Nikka while Mom, Lyn and I spoke.

As we spoke and they played, Lyn became jealous of their interactions with Nikka.  Nikka was so excited to have extra hands petting her that she ignored Lyn when Lyn would call her over.  Lyn would hardly look at the camera or engage in the conversation because she was watching Nikka intently.

She knew she shouldn't ask the cousins to stop petting Nikka.  They were doing nothing wrong.  She wasn't upset at the cousins.    She just did't like the fact that Nikka was clearly enjoying their attention.  She is so used to having Nikka's attention all to herself that she gets jealous if Nikka gives attention to others.

Friday, March 28, 2014

What Would Dolly Do

By now, you have probably realized that my brain sometimes makes absurd connections that make me, and hopefully you, laugh.  Well, here's another one.

Lyn was watching TV and saw a commercial for Soma bras this week.  The commercial prompted her to announce that she needs new bras and that she really does prefer the Soma brand.  (She's never worn a Soma.)  She also stated that she needs a DD cup now.  (She's not much more than a B cup, C if she's pushing it.)

Mom shared this with me and I howled.  What would Lyn do with a DD?  Well, that thought reminded me of a song by Kristin Chenoweth called "What Would Dolly Do?"  I'm not much for Country, but this song made me laugh the first time I heard it and it jumped to mind when I learned of Lyn's newly declared bra size.

Happy Friday!

Thursday, March 27, 2014


Every day after Lyn gets home from day hab, she asks what's for dinner and if Mom is going to cook dinner soon.  She's pretty consistent and asks at the same time even on the weekend.

Some days, she'll be unhappy that Mom is fixing chicken or steak or carrots or whatever because she's never liked chicken or steak or carrots or whatever.  We've gotten used to her declarations of not liking something she liked a week ago.  Honestly, these declarations come from the fact that she no longer remembers if she likes or dislikes a food.  It is her best guess and an attempt to feel in control or relevant to the decisions being made.

The advantageous aspect of forgetting what you do like is also forgetting what you don't like.  This has allowed Mom to make dishes which Lyn would previously reject.  In the past year, Lyn has eaten things that she's not eaten in over 20 years and has been happy with what was on her plate.

Unfortunately, the forgetting has expanded and now she's starting to forget if she's even hungry.  Take yesterday for example.  She asked Mom what was for dinner.  Mom said "Steak.  Are you hungry?"  Lyn thought and said "I don't know if I'm hungry or not."  Mom caught her breath and decided to cook dinner, keeping Lyn to her regular schedule even if Lyn wasn't sure.

This is a common problem with Alzheimer's patients.  As their brain dies, they may no longer taste or smell food as well as they once did.  They may not recognize hunger or thirst.  When they do, they may even get distracted and forget to eat or drink.

Additional Information:
Alzheimer's: Making Mealtimes Easier
Food, Eating and Alzheimer's

Wednesday, March 26, 2014

Of Dogs and Laps

At my home, the dogs have a rule that states "If there's a bottom on the floor; there's a dog in the lap."  It is a simple rule and one that my kids understand just as well as the dog.  This is, apparently, a universal dog rule or nearly so because Nikka knows it well.

Then again, Nikka will find Lyn's lap when she's on the couch, too.

Tuesday, March 25, 2014


In June 2014, independent game company Fayju will release a game called Cascade.  The game is a result of a collaboration between a Dr. Jody Mason, Senior Lecturer of Biochemistry at the University of Essex and Gaz Bushell, digital artist and games developer.  The game is intended to educate those who play it about Alzheimer's.  Hopefully, this will raise awareness of the disease and increase empathy towards those who have it.

I love this idea!  Gaming, in all its varied forms, is a popular activity which, in this case, is being harnessed as a force for good.  You may be flying around inner space and shooting at some baddies, but those baddies are plaque tangles and the space is the gaps between neurons.  

When the game is released, I'll give it a go.

Monday, March 24, 2014

PBR 2014

I had spent part of the day working in my garden and missed the call from Mom and Lyn.  When I tried to call them back, I had missed them.  They were off to keep a date with the annual PBR show there in town.

My sister loves the cowboys and the bulls of the PBR and watches it on TV whenever she can.  For several years now, Mom has made sure that Lyn was able to attend the live performance.  

Lyn was happy because she got to see Bushwacker in his final tour.  In telling me about the day, Lyn was as focused on telling me about the police, EMT and fire department presence as she was about the bulls.  She was very proud that she unzipped her purse at the security check point and the officer didn't find anything problematic.  

Apparently, one of the bulls went after one of the horses after he bucked off the rider.  The bull fighters got some of the action as well.  She also told me about a bull that tried to climb out of the shoot before the bull rider even was mounted.

She thought about buying a tour program but was unwilling to spend $15 on one.  She thought about buying a t-shirt but didn't want to spend $30 on it.  So, Mom's going to check the PBR store on-line to see if prices are a little better.  

A young bull rider named Guytin Tsosie was introduced to the crowd.  He's a Native American who has never been very far from home and he was overwhelmed with being the center of attention.  He is so good that he had been invited to attend all three days of the invitational and ride all three events.  The PBR officials have invited the young man to continue riding through the rest of the season.  When it was announced, the crowd shook the building with their cheers.  We wish him well.

Lyn was happy despite the chaos of the venue.  

Friday, March 21, 2014

This is Your Brain on REST

It has been a good week for Alzheimer's in the news.  Another study was announced this week which gives us just one more tidbit of information in understanding the disease.

Scientists at Harvard have released the results of a study which indicates that the REST protein helps protect neurons from oxidative stress.  In short, the more REST round in a brain, the less cognitive decline found in the brain as the brain ages and is exposed to various stressors.  This may actually explain why some individuals who have the plaque tangles associated with Alzheimer's never develop cognitive symptoms.  This raises the possibility that if you can increase the levels of the protein in the brain you may be able to help the brain protect itself.

Additional Information:
Fetal Brain Protein Reactivates in Old Age, May Fight Dementia
Protein Protects Aging Brain

Thursday, March 20, 2014

2014 Alzheimer's Facts

Yesterday, the Alzheimer's Association has released the 2014 Alzheimer's Disease Facts and Figures report.  The link takes you to the PDF of the full report.

While I find the above video a little difficult to watch (let's blame my headache), the report's announcement page has some great additional information and highlights the disproportional impact Alzheimer's has on women because they are more likely to be diagnosed with Alzheimer's than a man and because they are also more likely to be the care giver of someone who has Alzheimer's.

Wednesday, March 19, 2014

New Shoes

Lyn needed new shoes.  Apparently, white ones and black ones are not comfortable any more.

The neon rainbow ones are most comfortable this season.  As long as she's happy, that's all that matters.

Tuesday, March 18, 2014


When I first saw the word "musashi" when reading through the news last night, I got it mixed up with Mushishi, a line of yarn which I like.  I was close but had to double check the labels on the hanks in my stash to be sure and found my error.  Musashi is not yarn.  It is not, in this case, a reference to Miyamoto Musashi, the famous Japanese swordsman.  Musashi is a protein which, it turns out, is critical in the process of forgetting.

We tend to focus on the need to remember and often pay little attention to the fact that we forget until it raises a moment of inconvenience such as a missed appointment or anniversary.  However, forgetting is as important to proper brain function as is remembering.  Musashi intervenes in the encoding process and allows us to forget information which is not needed permanently.  This means that the process of forgetting is an active process even if it seems haphazard and frustrating to us.

Our brains seem to work best when there's a balance between musashi and adducin which helps retain memories.  With this discovery, scientists have another area to investigate in connection with Alzheimer's.

Monday, March 17, 2014

Making Faces

Yesterday, Mom and I had our regular Skype conversation.  During our conversation, my Uncle called to speak with Mom for a few minutes.  Knowing the call was going to be just a few minutes, we kept the Skype session going.

Lyn just stared at me.  She wasn't sure what I was going to do or say and was content to just look at me.  I smiled at her and she smiled back.  I crossed my eyes at her and uncrossed them.  She's never been able to cross her eyes.  So, she looked to her left and then to her right.  I crossed my eyes, stuck out my tongue, kept my right eye in and rotated my left eye out and back in, then did the same with my right eye.  (Yes, I can rotate my eyes independently.  I used to think everyone can.  My husband tells me it is not a normal skill.)  She scrunched up her nose and eyebrows and twisted up her mouth.

I was delighted that she was trying to stay engaged and started laughing.  She started laughing too.  She got that we were being silly and started to make faces at Mom while Mom kept talking.  My Uncle asked what was cracking us up and wasn't sure what to say when Mom told him that "The girls are just making faces at each other on the computer."

It only lasted a few minutes but it was fun and spontaneous.

Friday, March 14, 2014

Travel Choices

For years, Mom has wanted to take Lyn to Disney World.  There's always been one reason or another which has postponed the effort.  The challenges of traveling with Lyn being one of the reasons.

Traveling with Lyn poses challenges, it is true.  However, Lyn's wanted to go for a long time and her time is increasingly short.  Mom thought about it and decided "Why not?"  Why not take Lyn and enjoy Disney while she still can?  Why not throw structure to the wind for a few days and just do it?  Lyn knows nothing of Mom's thoughts.

Twice this week, the topic of travel has come up and Lyn has initiated it.  They drive past the airport frequently and drove by just as a plane was taking off.  Lyn asked where the plane was going.  Mom stated that she didn't know.  Lyn proposed that the plane and its passengers were going to Disney.  Lyn stated she wants to go to Disney.  Between then, they decided that Lyn didn't have the cash sitting around for a trip anytime soon.

Lyn doesn't know that the tickets have already been purchased.

Thursday, March 13, 2014

Good Bye Governor

Lyn's internal governor is failing.  She spends her day working very hard to stay in the moment.  It is exhausting and by 3pm she's worn out.  She's not able to control her reactions, attitude, paranoia or fears when she's tired.  She's a crabby, angry, anxious woman when she's tired.  Even I can hear The Tone in her voice when I call in the evenings to check on them.

She's been starting to obsess about the concept of safety.  Is it safe to go to someplace with the folks from day hab?  Is it safe to go out after day hab?  Is Mom sure it is safe?  Mom's repeated answers are not assuring her and the subject gets revisited multiple times.

Mom has also noticed that her confusion increases a lot when she's tired.  She doesn't understand even single-step instructions.  Last night, she was asked to match some socks and could not despite each pair of socks being different from the others.

Evenings are tense with her short temper.  Fortunately, she frequently goes to bed by 7pm.

Wednesday, March 12, 2014

Presentation Preparations

Mom has been scheduled to present on early on-set Alzheimer's and how it is impacting Lyn.  She will be presenting twice this month.  Once for the staff of the agency which manages Lyn's care and once for the staff at day hab.  There are new employees in both locations and keeping folks educated is the goal.  Mom wanted to speak about Alzheimer's a bit more broadly but has been asked to keep it specific to Lyn because the attendees interact with her.  Mom has shared her notes below:

My daughter is a client. She is intellectually challenged. However, 3 years ago at age 40,she was diagnosed with a terminal, brain disease, Early On-Set Alzheimer's. Anyone younger than 60 is considered Early on-set. This is just one type dementia. The only way to know, for sure, what type dementia is a post-mortem. This doesn’t mean that she’s had Alzheimer's for 3 years. Probably she’s had it more than 10 years. By the time symptoms appear the brain has been dying for several years. The plaques and tangles have spread.

  • Her speech patterns have changed. 
  • She is becoming more unsteady when walking on uneven surfaces or stepping off a curb. 
  • She cannot make simple decision some days. I now have to help her pick out a shirt each morning. I have to wash & brush her hair. 
  • She no longer can work the washing machine. That was my first clue there was a problem. 
  • She is beginning to forget names. When we Skype with her sister and nephews on Sundays, she will use the boys names, when they are in screen. If they are not visible, she’ll say “the boys” or keep repeating “how are , where are…” 
  • She will rise to the occasion. She will work hard to answer what she thinks you want her to say or do what she thinks you want her to do. 
  • She is beginning to show signs of paranoia. IE: after regular team meeting she saw her case managers at their cars. They are talking, perhaps laughing. She has said, more than once, “they’re talking about me or laughing at me.” I assure her that is not the case, they may be talking about going to lunch or their busy schedule. She’ll look at me with great doubt in her eyes. 
  • Because she “works” so hard, mentally during the day to do what she thinks she should by 3pm she’s exhausted. She eats dinner 4-4:30 and it’s not unusual to be asleep by 6pm. 
  • A-typical Sundowner’s. 
  • Food choices, one week she’ll like chicken or hot chocolate. The next wk I’m told that she never liked them. 
  • People forget things in the order they learned them. For example, we teach our children to feed themselves, first by hand, then with a spoon, then a fork and then a knife. We teach them to put the napkin in their lap. Now, my daughter, usually keeps the napkin on the table by the plate. She will ask me to cut her meat. Although, when out she will struggle because she knows what you want her to do. This is a great strain on her brain. 
  • So how do we deal with all this? With Alzheimer's patients, you go into their world. If something is said that makes no sense, go along with it unless it’s something that will cause harm or endanger her. If it’s not going to change the course of history—so what. We tell “fiblets”. Not really a lie. A fiblet is told because I want her safe, feel secure and not feel that she did something wrong.You never argue with an Alzheimer's patient, you won’t win. 

The doctor who assessed her most recently said the meds on the market today have been tested on patients over 60 yrs. They don’t know the possible side effects on anyone younger than 60. The meds, over 60, can slow down the progression but someone in their 40 – possible death. I don’t want to take such a chance with her. As the brain dies the body will no longer know when it’s hungry, thirsty, sleepy. She might not be able to walk. She might become a vegetable. She might wander. Her immune system will not fight disease as it has. I already see that.

She knows her brain is changing and that frustrates her. I try not to use the words Alzheimer's or Dementia around her.It makes her mad.She’ll say “I don’t have that diagnosis. I’m just Lyn.”

Tuesday, March 11, 2014

A Predictive Blood Test

Researchers have come up with a blood test which predicts if a person will develop Alzheimer's in the next few years.  The findings are preliminary and needs to be confirmed.  If it is, this is a could be a game changer.

Update:  A new article on the test has been published.

Monday, March 10, 2014


One of Mom's neighbor's has added a dog to their family.  The dog is a lovely red Pit Bull who looks like he could be related to Nikka.  He's a very calm dog who seems pretty non-reactive to anything or anyone.  He's big though and could easily put his front paws on the top of the wall dividing their yards.

Before Nikka was added to the family, she was fostered in a home with other dogs.  However, when she settled in with Mom and Lyn she decided she no longer wanted to be around any other dogs.  Nikka was not happy to discover the new neighbor and Mom had to intervene to keep her from climbing the wall to get to him.  For the past couple of weeks, Mom was having to go out with Nikka because she couldn't be left outside unsupervised.  Nikka wouldn't agree to doing her business when on the leash.  She never has.

Mom decided that the best option was to raise the height of the wall to the point where Nikka cannot jump to get her paws on top or pull herself over.  She spoke to the neighbor and explained the issue.  The neighbor was very open and agreeable to having the wall modified.  Last week, the work was done.

The day was a cold and blustery one.  Lyn was still fighting her cold.  (She's better now.)  It was very upsetting to Lyn that there were men in the yard working and it was too cold for her to be out there with them.  The men weren't the problem.  The illness and weather conspiring to keep her in was the problem.

Once again, Mom was able to find a solution to the issue of supervision.  Lyn stood in Mom's bathtub to watch the men work.

Fortunately, the work only took two hours and both problems have been solved.

Friday, March 7, 2014

Alzheimer's is Under Reported

Rush University has just released a study, Contribution of Alzheimer Disease to Mortality in the United States, which indicates that Alzheimer's is under reported as the cause of death by doctors and coroners.  They tend to list the cause of death as the acute, secondary condition in play when a person passes such a pneumonia or a urinary tract infection.  However, the Alzheimer's patient's pneumonia or urinary tract infection become fatal because their body is no longer able to fight the infection due to the damage done by the Alzheimer's.

Listing the secondary condition as the cause of death leads to the CDC and other organizations tracking inaccurate or incomplete data.  The full impact of Alzheimer's Disease goes unrecognized.  There may already be half a million people who die of Alzheimer's in the US each year already.  Keep in mind that the rate of people who have Alzheimer's is looking like it will triple in the near future.  So, will we see 1.5 million die annually in the US as a result of Alzheimer's?

NBC News has published the story, "Alzheimer's Deaths May Rival Cancer, Heart Disease, Study Finds", in connection with the release from Rush University.  It is worth taking a look at.  The imbedded video is of the story that was run on the Nightly News on Wednesday night.

In connection to the under reporting of Alzheimer's as the cause of death, it is mostly omitted from references in obituaries as well.  When I worked in the Alumni Office of my alma mater, I scrolled through all of the obituaries which were sent to us or which were published locally.  While I wasn't looking for Alzheimer's specifically, I also don't remember seeing it in obituaries.  Mom reads the obituaries in her local paper daily and, while always happy to not see her name listed, was surprised to find Alzheimer's referenced this week for the first time that she can recall.

The obituary was for Barbara T. Lenz, a 51 year old woman with Down's Syndrome.  Her obituary is quite the celebration of her life.

Thursday, March 6, 2014


When you're feeling sick, a nap is a great thing.  Lyn had announced to Mom that she didn't need a nap and it was her decision.  Mom softly agreed.

The day had started off well.  Lyn had woken feeling a bit better.  She felt active and ate well at lunch.  She was in a good mood and didn't argue over anything.

Spring is starting in New Mexico and Mom was able to convince Lyn to sit out in the warm sun for a bit after lunch.  She relaxed into the warmth and soon was fading.  When Mom suggested a nap, Lyn readily agreed.

She changed into her pajamas and napped for two solid hours.  She had to keep her door closed or Nikka was going to crawl up in the bed with her.  By 4:30, Lyn was done with dinner and by 6 she was done for the night.

She has decided she needs to stay home another day.  Mom has sent an email to notify the staff.  Hopefully, another day of napping will help her mend.

Wednesday, March 5, 2014

Watching TV

Lyn's sick again.

She came home early from day hab.  She's got a cold and has already gone through a box of tissues.  Hopefully, this cold won't last too long or go into another big infection.  It was only a month ago that she had her last one.

I expect that she'll spend today napping and watching tv.  Not a bad way to spend the day when you're feeling poorly and you have an attentive buddy at your side.

Tuesday, March 4, 2014

Not to Complicate Matters

In reading through Alzheimer's news yesterday, I found a study on twins with Alzheimer's which was very interesting because it looked at the brains of twins after they had passed.  At least one twin of each pair had been diagnosed with Alzheimer's before their deaths.  Not only had the twins shows similar progression of symptoms; their brains had similar damage.

The part that jumped out at me, however, was the opening sentence of the news release (linked above).  It states, "Despite widespread use of a single term, Alzheimer’s disease is actually a diverse collection of diseases, symptoms and pathological changes."  This stands out because it is the first time I've seen Alzheimer's referred to as more than a single disease.

If this is true, it may explain a number of things that have been previously noted about Alzheimer's  and the people who have it.  Why is it so hard to find the cause; not just an increased risk factor?  Why have we been unable to devise a definitive test?  Why have we been unable to develop an effective treatment or prophylactic?  Why does the disease progress so differently from patient to patient?  We recognize themes and variations on patterns seen with the patients, but my sister's experience will differ quite a bit from that of another person.  It differs even from what we saw with my Grandmother.

Could it be that, perhaps, we've been wrong and we're really dealing with multiple diseases?

Monday, March 3, 2014

Keeping Warm

Lyn complained of being cold as she sat watching Cinderella yesterday afternoon.  Mom was just pulling sheets out of the dryer when Lyn spoke up.  So she wrapped the hot sheets around Lyn.

Lyn was quite happy with the arrangement.  Keep in mind that she had a wool blanket over her lap, had on two pair of socks, sweat pants and a sweat shirt.  She reminds me of our Grandmother with her inability to keep warm.

The sheets made all the difference.