Friday, July 31, 2015

Postcards Part 1

When I went to New Orleans in April for my annual corporate conference, Mom asked me to send Lyn some postcards.  I was able to find some while between sessions and started mailing them to her about halfway through my stay.  Lyn was excited to receive the mail because it was addressed to her and she liked the pictures.  When I travelled to Chicago in June, another postcard was found and mailed to her.  I've done it twice more now in connection with the trips I've taken with my family.  Each time, she is delighted to get them in the mail.  I actually have two more sitting on my dining table so I can spread out the cards she gets.

Lyn has also started receiving post cards from a friend we've made through our participation in Memory People and from a former neighbor.  She is keeping her postcards and loves to pull them out to look at the pictures again and again.

She doesn't know what to do with her face all of the time when we try to take her picture, but I assure you that she's happy looking at her cards.

Mom commented on how many she's collecting and how Mom only gets bills and junk mail.  Lyn, ever humble, quipped back "Well, I'm just more popular than you."

Thursday, July 30, 2015

In His Own Words

I've mentioned Rick Phelps before.  He's the author of _While I Still Can_ and the founder of an online support group for individuals who have memory issues and the people who care for them.  The video below is him giving us a bit of insight into Alzheimer's.  Rick has early on-set Alzheimer's and the video was recorded in 2012.

Wednesday, July 29, 2015

Calling 911

Mom writes:

She wanted me to "be happy to fix dinner."  So I pushed my luck and began to fix meatloaf.  Hmmmm, no argument.  

She came into the kitchen to throw something away and I could see how tired she is.  I asked if she was folding up.  "Yes, I'm ready to drop right here."  I hugged her and said to go ahead then I'd have to call 911 and the paramedics would come, pick her up and check her out.  She began to laugh so hard that Nikka came in to see what was happening.  I asked if that's what she wanted me to do, call 911?

The laughter began again and I kept asking her to answer me.  She couldn't.  I waited till she quit laughing and then said I needed an answer.

"Sure they can come and check me out anytime."

I sent her to go get her bath while dinner cooked.  I told her they should check me out.  "No, you're too old."


Tuesday, July 28, 2015

An Academic Dispute

Two academic institutions in California have gone to court over a research grant worth $55,000,000.  This case is of note for two reasons.  First, universities have traditionally had an unspoken agreement that research funds follow the principal investigator if that individual leaves university A for university B.  In this case, university A objected strongly citing that grants are made to institutions; not principal investigators no matter how key a role that person plays.  This is particularly true of grants made by the National Institutes of Health as in this case.  Second, the funds in question are involved in the Alzheimer's Disease Cooperative Study.

The case is an interesting one and is going to have an impact on many research projects going forward when the principal investigator is being courted away from the institution employing them at the time the grant is awarded.  Depending upon the situation, a scientist may be willing to abandon the funds and the project which helped them secure the new job offer in the first place.  Additionally, it may make it more difficult for institutions to hire their way into established research projects.

What will this do to the science?  In this case, university B has to return all funding, equipment and data.  University A has to confirm that everything has been returned intact.  The problem?  The people best equipped to do this may no longer be associated with the project, having just been poached away.

Hopefully, it is not that dire and staff remain who can continue the work.  However, the work has been interrupted, the staff shaken up and political impacts remain.  It will be interesting to see what will happen with the study and if this case detrimentally impacts it.

I welcome any feedback from our friends in academia who can comment on this situation.

Additional Information:

Grant Dispute Throws an Unwritten Rule of Academic Poaching Out the Window - The Chronicle of Higher Education
UC San Diego wins legal battle in dispute with USC over Alzheimer's project - Los Angeles Times

Monday, July 27, 2015

Skyping While Driving

My family and I had an opportunity to visit the beach for the weekend.  It had easily been a dozen years since our last seaside foray.  We were to be gone for the whole weekend and while we expected to leave the beach early Sunday, traffic on the East Coast, particularly on I-95 can be challenging at best.  I couldn't guarantee that we'd be home in time to Skype at a reasonable hour.

Knowing that our drive home would be a bit long and potentially prevent me from being able to Skype with Mom and Lyn, I had to figure out an easy option which wouldn't confuse anyone while still allowing us to communicate face-to-face.  Fortunately for us all, Skype already solved the problem for us.  I simply added the Skype app to my phone, logged in and we were Skype enabled while mobile.  Mom had to do nothing different than she normally did.

When they were back from church, she called my cell to see if "now" was a good time.  I assured her that I was doing nothing more than sitting there crocheting at 70 miles an hour.  We switched over to Skype and started our conversation.

Lyn immediately started to chastise me for speaking on the phone while driving.  Through the wonder of technology, I was able to turn the camera to face my husband, allowing Lyn to see that he was driving and I was just holding the phone.  Her tone immediately changed as she sang out a hello to him.  He was driving and she could see he had both hands on the wheel.  We were free to speak and her objections were cleared.

Keeping Lyn's regularly scheduled conversations happening seems to be increasingly important.  She counts down the days to that face-to-face even though we may speak a couple of times via phone during the week.  Her temperament is more and more testy and going a week without a conversation really strains her as we found out while my family and I took a week off earlier this month.  In that case, we had gone to Canada and had very limited cell data allowances.

After seeing the strain the missed week put on her and Mom, I felt it important to keep that appointment this week despite the drive.  Fortunately, I rarely travel internationally and, had I thought about it more at the time, I could have worked around that through access to the hotel's wifi.  So, going forward, unless we're in the middle of the woods with zero reception (a highly unlikely event for me personally), we should be able to keep our regularly scheduled Skype conversation.

Technology can be a beautiful thing.

Friday, July 24, 2015

Go Outside

I don't know how this fine July day is where you are, but it is beautiful here.  Go outside and enjoy the sun!!

Thursday, July 23, 2015

Hardly Working Hard

When Lyn goes to her twice weekly physical therapy appointments, she works hard for the therapist.  The moment he's out of site she refuses to cooperate.  She will not perform the exercises while she's at home.  She will not perform the exercises at day hab.  She will ONLY do them for the therapist.  Even with the two hours of work a week, there has been no improvement in her gait or her stability.

Mom suspects that some of Lyn's instability is being done for effect while some of it is real.  At home, Lyn's able to get out of a chair without significant issue most of the time.  At church, no matter how stable she is before or after Mass, you would think she's on the verge of needing a wheelchair.  She hasn't used the kneeler in a year or two.  She can hold onto the pew in front of her to pull herself up to a standing position.  When she's walking down the isle to receive communion, she staggers back and forth while you see very little of that when she's walking in upon arrival.

Her physical therapist has been working with her to get her comfortable using her walking stick.  Earlier in the week, as they were leaving therapy, Mom asked Lyn to show her what they had done.  Lyn walked up a set of stairs using the cane while talking the whole time.  Mom asked her to come back down.  Lyn put her can one step down, looked confused, picked it up and walked down without using it.

Lyn has good days and not so good days.  That's the Alzheimer's at play.  However, Lyn also has always liked an audience.  She can be manipulative and has been known to exaggerate her disabilities when she felt like the attention was worth it.  For example, she pretended to not know how to tell time and asked my boyfriend to teach her.  It is going to be interesting to see how stable Lyn is when my family and I visit next month.  With my husband around, will she be unstable and needing help or will she be functioning well?

We'll soon know.

Wednesday, July 22, 2015

Of Differences and Risks and Impacts

On the way home from work yesterday, I listened to an article on NPR indicating that women progress through Alzheimer's faster than men.  We've known for some time that women are at higher risk for Alzheimer's.  We don't know why they're at higher risk or why they progress faster.

Looking up this article lead to several other connected concepts.
  • The pathology of Alzheimer's differs by race.  When brains are autopsied after an individual dies with Alzheimer's, there are significant differences in the findings.  For example, blacks have a higher rate of Lewy Body Dementia along with Alzheimer's than whites.  However, most therapeutic approaches have been developed off the pathology found predominately in whites.  This has been an issue in the treatment of other diseases as well and once again speaks to a need to research more using subjects of multiple races.
  • Alzheimer's affects caregivers more than the patient.  Yes, the patient is aware of their cognitive decline and they have anxiety, delusions and hallucinations.  However, it the caregiver who has to intervene with the behaviors which result, who has to arrange respite care if any is possible, who as to care for the patient and who faces the physical toll of the stress of that care.
  • Caregivers benefit from counseling.  This one seemed kind of obvious to me, but I put it here in case a caregiver has not considered working with a counselor.  The stress of caring for an Alzheimer's patient should not be downplayed.

Tuesday, July 21, 2015

Music Moves Her

Like many other Alzheimer's patients, Lyn still responds to music.  On Friday, her respite provider took her to the concert at the Zoo.  A dose of meds kept her anxiety at bay which let her make it a late night.  As you can see, she enjoyed herself.


Many thanks to her respite provider for sharing the clip of her enjoying herself.  I greatly appreciate it!

Monday, July 20, 2015

Looking Beyond Beta-Amyloid

I spent most of last night helping my husband bottle up over 8 gallons of honey from two of his hives.  We have more to do tomorrow, but I think we're about 3/4 of the way through the frames he pulled from his hives.  As a result, I didn't have much time to write and a link from a friend provided an interesting tidbit of news.

Scientists have long focused on beta-amyloid in their search for an Alzheimer's treatment.  An article on NPR yesterday indicates that some are moving beyond beta-amyloid in a search for a treatment, focusing instead on stopping the buildup of both tau and beta-amyloid by preventing proteins from misfolding.  While this approach will not cure Alzheimer's, the hope is to slow the progression of the disease.  The article discusses two companies targeting misfiled proteins, one of which uses a virus.  It is an interesting article and worth a read.

Not to sound like a broken record, but both treatments have been shown effective in mice.  Mice are different animals than humans and we have yet to see a treatment that works successfully, even minimally, for humans even though several have worked on mice.  So, for now, I'll remain cautiously optimistic.

Friday, July 17, 2015

She Gets It

On the way to day hab yesterday, Lyn and Mom had to change their route due to traffic.  Along the way, they spotted an egret walking beside the road.  Lyn asked what it was and Mom told her.  After several minutes of silence, Lyn burst out laughing.  Mom asked what was making her laugh.  It took a while for her to gain control enough to croak out a response.

"You guys didn't believe me about the chicken!  Now do you?!"  She had to wipe tears from her face, she was laughing so hard.  Caught off guard, Mom told her she was "100% right.  We should know better than to doubt anything you say."  Lyn's subtle response was a simple "Ha!  I told you!"

Lyn used to ask what was on the blog each morning.  She's long since stopped doing it.  She didn't know yesterday's blog was about the chicken.  She also didn't know that Mom had inquired about it.  Randomly, her neurons fired and made a connection that delighted her and made Mom laugh too.

Thursday, July 16, 2015

The Tale of the Chicken in a Sack

On Tuesday, I spoke with lynx and she told me about her exciting day at day hab.  One of the staff asked if she and the other clients wanted to see the chicken in his office.  The chicken was in a brown paper bag.  It was lying down, "getting ready to take a nap."  Its eyes were open.  She said it had brown and white feathers.  She was very excited to see the chicken.

I asked her where the chicken came from and she was a bit disgusted with me for not knowing that it came from "the chicken store on Lomas."  I asked a few more questions about the what the chicken was doing.  She insisted it was just lying down.

I was a bit dismayed and asked to speak to Mom.  Mom reiterated everything that Lyn had said, confirming that Lyn's statements had not changed all afternoon.  Mom and I didn't have the heart to break the news to Lyn that the chicken was dead and not napping.  We were flummoxed as to why the staff member would bring a dead chicken into the office in a paper bag.  Mom promised to ask about it on Wednesday when she took Lyn to day hab.

Fortunately, during the day, Mom emailed me with an update.  Mom had asked a staff member about the incident and learned the following.

The staff member who had shown the chicken to Lyn had a pet chicken who had recently died.  This was not the chicken in the bag.  Another staff member had bought him another chicken as a pet.  The chicken was alive and it was quietly resting in the bag when Lyn looked at it.  The bag had holes so it could breathe easily.  The chicken was purchased in the South Valley; not at a chicken store on Lomas.

Mom and I have gotten a good laugh out of this.  We are glad to know the chicken was alive and that we were wrong about it.  We are amused that Lyn was right and that we didn't believe her, thinking she was interpreting things through the haze of Alzheimer's.  We're glad to know the chicken has a home.

Tuesday, July 14, 2015

Bird Watching

Lyn sits on the floor frequently.  She's comfortable there and it invites more contact with Nikka.  Yesterday, she sat on the floor to watch the birds.  Nikka backed up and sat on Lyn's lap to watch the birds with her.

The bird feeder is visible straight through the backdoor and despite the angle of the picture, they were actually turned to face the door.  They watched the birds for at least 15 minutes before tiring of that activity.

It's what buddies do on a Monday morning.

Monday, July 13, 2015

Sage Testing Others

While I was away last week, I had the opportunity to offer the Sage Tests to a couple of folks I know. I had offered to them in the Fall but they weren't ready to consider what the Sage Tests may reveal.

The Sage Tests are designed to help you evaluate your cognitive functioning.  They have been developed by a medical school and have proven highly effective in helping people identify when or if they need to speak with their doctor about how their brain is working.  They are primarily geared towards helping identify potential onset of Alzheimer's disease.

There was reason to offer the tests to the folks who took them.  What we learned was that both are functioning in normal ranges.  It was good to see the results and the actual tests they took because it highlighted that their problem solving skills are in good shape.  For example, the test asked them to draw a clock face with the hands in specific positions.  From a discreet distance, I was able to observe how the clock face was drawn and saw them make a circle before adding in the 12, 3, 6 and 9 in that order.  They then filled in the missing numbers.  After I scored their tests, I asked why they drew them that way.  Their answers revealed their thought processes were focused on getting the numbers in the right place and the right order.  This took spatial reasoning as well as number order knowledge.

One of the individuals does have a concerning memory issue.  It is different than what I've learned about Alzheimer's and I encourage that individual to raise the issue with a doctor.  Even if the Sage tests indicate normal cognitive functioning, there can be other issues at play which impact a person's ability to recall.  For example, memory can be impaired by depression or a poorly functioning thyroid.  This is one of the reasons why doctors look at multiple body systems when a patient presents with cognitive or memory challenges.  I personally can attest to this.  I have a hypo-active thyroid.  When I take my thyroid medication regularly, I notice my memory is sharper.  If I forget to take it for a few days, then my memory is muddy and I forget to take the medication again.

If you or someone you care for has memory issues which are a concern, consider the Sage Tests as a quick way to evaluate cognitive functions.  If the results are below 17 points, then speak with a physician and seek additional, more formal evaluations.

Friday, July 3, 2015

July Holiday 2015

Tomorrow is the Fourth of July and my family and I will spend it eating too much and laughing with my husband's cousins as they stage their own fireworks show.  It is a loud, colorful, mosquito-eaten day which we enjoy.

Tomorrow, Mom will most likely have to medicate both Lyn and Nikka so they can survive the night without having full-blown anxiety attacks.  Neither are able to tolerate the sounds of thunder much less fireworks or the occasional gunshots.  I think their fear stems from their inability to anticipate when a boom is going to happen or understand why they are happening.  If you're caring for an individual with a form of dementia, you may find they are highly agitated during storms and fireworks shows.

For those of you who don't enjoy the booming fireworks, I hope you have a quiet evening where you and your pets feel safe and secure.  For those of us who relish the noise, I hope you have an enjoyable time and remember to be gentle with those who feel differently.

Enjoy your holiday however you spend it.  We'll return with posts on Monday, July 13.

Thursday, July 2, 2015


Progressive Supranuclear Palsy (PSP) is a rare brain disease in which small, pea-sized lesions form in the brain causing loss of balance, complex eye movements, blurred vision and progressive dementia.  As the name indicates, the disorder is progressive and gets worse over time.  Many of the symptoms mimic Parkinson's disease which makes it hard to diagnose.  

Lynn's physical therapist asked if Lyn had been evaluated for it.  She has not.  He indicated that the symptoms he's seeing are similar.  Regardless of the cause of her gait issues, the therapeutic approach is the same.  

Mom placed a call into Lyn's physician to give her the name of the disease and to see if Lyn needs to be evaluated or if it can be ruled out.  I've not noticed the eye movements described in the link above.  I doubt that PSP is a factor here.  Even if it was, according to the NIH, mortality is usually within 10 years of the onset of symptoms, often as a result of aspiration pneumonia.  Aspiration pneumonia is also a risk with Alzheimer's.  Neither have treatments available.  So, even if it is PSP, she's got a progressive neurological disease.