Friday, September 28, 2012


Lyn was either a freshman or sophomore in high school when this picture was taken.  She and the smiling young woman behind her were performing in from of their classmates and friends.  They were laughing as much as they were trying to get through their routine.  

The young woman is, of course, older now and wheelchair bound.  However, she's always been warm, happy and just bubbly.  She and Lyn were good friends from very early on in their education.  

I don't remember why this performance was held.  However, the smiles on their faces speak to me of the laugher these two have shared.

Thursday, September 27, 2012

Research Underway

Scientists are continually looking for new ways to research Alzheimer's Disease because a new direction of study may lead to a better understanding of the processes changing the patients' brains.  Treatments cannot really be targeted or identified until the base processes are identified.

One research opportunity that is being followed is using induced pluripotent stem cells from Alzheimer's patients to grow brain tissue in a laboratory setting.  The Alzheimer's patients provide skin cells which are used to create stem cells.  The stem cells are then coaxed to grow into brain tissue.  The brain tissue is genetically the same as the patient who contributed the skin cells.  This allows the scientists to work with tissue that is ethically and safely collected.  The patient doesn't undergo a dangerous brain biopsy.  The scientists get access to (potentially) impacted tissue without waiting for a post-mortem donation.

Another path of study is focusing on nanoparticles as a delivery mechanism for getting the drug of choice to the desired parts of the body.  The opportunity with nanoparticles is that they can cross the blood brain barrier due to their extremely small size, allowing medicine to get in the brain itself.

Wednesday, September 26, 2012

Visual Cues Study

A researcher at Grand Valley State University has received a grant from the National Institutes of Health to study how Alzheimer's patients rely upon visual cues to navigate their environments.   Alzheimer's causes vision problems in approximately 60% of patients.  So, this study will hopefully explain what the patients with compromised vision are relying upon to identify where they are and how to get where they want to go.  It has already been found that strong visual contrast can impact how much an Alzheimer's patient consumes in food and beverages.

This study may not be of benefit to the patients with posterior cortical atrophy because a different mechanism is in play.  Posterior cortical atrophy, an atypical variety of Alzheimer's, is a bit different in the impact to the patient's vision.  With this form, there is disruption between what the eyes see and what the brain interprets.  Author Terry Pratchett has this form of Alzheimer's.

Tuesday, September 25, 2012

Worth Reading

Sometimes, you just have to let others tell their stories.  These two are worth reading.

Ann Johnson, diagnosed at 52, continues to lecture on dementia to bring awareness to it.

David Esquibel was recently diagnosed at 53.  Already, he is looking for ways to serve as an advocate.

Monday, September 24, 2012

A Fall

On Friday, Lyn went to Merry Makers to dance and socialize with her friends.  She and two of the guys were headed to the door into the lobby when she tripped over someone's foot.  She fell and landed on her left shoulder.  The staff of Merry Makers immediately were there to help Lyn up and make sure she was ok.  Lyn's respite provider also rushed to her side.  They put ice on the upper arm where she said it was uncomfortable.  She wasn't seriously hurt, just a bit bruised. 

Lyn didn't want to go home and decided to stay for the rest of the evening.  She didn't dance though.  She sat and watched and sang.  By the time she got home, her arm was bruised.

When an accident happens, even a minor one, the team has a series of reports to fill out.  The respite provider has one report.  The staff at Merry Makers has another report.  Mom has a third report.  Additionally, Lyn's case manager has to be notified within 24 hours.  Notification happened within the first two hours.  

Friday, September 21, 2012

She's on Fire

Lyn had a GREAT day yesterday!

She was feeling better than she has in two weeks.  In the afternoon, she went bowling and scored big.

She scored a 127 in her first game.  She had one strike and a number of spares.  Her second game brought in a 154 with three strikes and a couple of spares.

She wanted Mom to call me and our Uncle right away to tell us her scores.

Way to go Lyn!

Thursday, September 20, 2012


The last section of the TEASC evaluation report on Lyn continues below:


1.  Along with strategies for managing her cognitive declien, Lyn could benefit from treatment of her anxiety.  One place to start would be desensitization and relaxation breathing.  With anxiety disorders involving fear of going out, the more the feared thing is avoided, the more the anxiety grows.  Therapy involves using relaxation techniques along with having Lyn take small risks and then increasing challenges as she's successful.  A psychiatrist or counselor could help Lyn and her family work on this.

2.  Because Lorazepam has been helpful in allowing Lyn to successfully manage stressful situations, we recommend using it on a regular basis to allow her to be out or cope with larger groups of people.  If it were too sedating, she could try a smaller dose.  The purpose of it would be to help Lyn do more things, and potentially, for her to be able to travel if desired.  In some individuals, Lorazepam can be disinhibiting or cause confusion.  This does not appear to be the case with Lyn.

3.  At the current time, there are no medications that significantly improve cognition in people with dementia.  The two types of medications used with dementia primarily slow progression.  In many people they have no side effects, but in others the side effects are problematic.  A consultation with a geriatric psychiatrist or with a neurologist who specializes in dementia (such as (suggested neurologist)) is recommended.

4.  Lyn indeed appears to have early onset dementia, which may occur in patients with underlying developmental disability.  Treatable causes have been ruled out with a normal MRI and EEG (although EEG was done a year ago), and unremarkable blood work including B12 and thyroid function studies.  A practice parameter from the American Academy of Neurology suggests no further workup is indicated unless specifically suggested based on the individual's history (Creutzfeldt-Jakob disease, tertiary syphilis).  The only question is whether an EEG should be repeated as Lyn has had a significant cognitive decline since last year when her EEG was performed.  Also, repeating the neuropsychometric testing might be considered in the next year or two to help monitor disease progression, however repeating the MRI scan is likely not of great benefit and is not recommended at this point; this question might be raised if Lyn is able to see a dementia specialist such as (suggested neurologist).

5.  Research has shown that exercise may be the best treatment for improving alertness and decreasing stress.  Because Lyn has some problems with weakness, we recommend continued P.T. as well as other physical activities.

6.  The Alzheimers Association can continue to provide both educational information and caregiver support.

Wednesday, September 19, 2012

Impression and Diagnosis

Continuing on the TEASC's report on their evaluation of Lyn, I'm quoting the actual report below.  Most of the interjections in parentheses are in the report.  Mine are in italics:

1. Dementia, mild.  Probable Alzheimers type.
2. Anxiety disorder, most consistent with agoraphobia (anxiety when out of home or in crowded situations)

Discussion:  Sundowner syndrome generally appears at the same time that significant dementia/cofnitive decline is noted.  The development of evening anxiety (when out of the home) that began 15 years ago is more likely to be a specific form of anxiety (such as agoraphobia), which can have many symptoms in common with sundowning.

Diagnosing dementia in individuals with developmental disability can be challenging.  Traditional IQ and many other neuropsychological tests done may not reflect actual abiliies.  It is more helpful to keep track of independent activities of daily living and basic activities, monitoring functional changes over time.  It is also critical to get labs and other tests to rule out medical causes.  (The workup done in 2011 was quite thorough).  Since being seen by (neurologist) and (clinician who performed the neuropsych eval) a year ago, Lyn has continued to have more functional decline.  Her general mood is good, and there is no indication per family of any depression.  Anxiety appears to be specific to being out in the evenings or in new situations, especially with groups of people.  This would argue against "pseudo dementia".  Her decline is most consisten with dementia.  However, anxiety does not appear to be restricting both Lyn and her family from doing things they used to do together (i.e., have people over, take trips, etc.).

The reason for using IQ tests Normed on a "normal" population is to gauge how much an individual's intellectual functioning is different from the functioning of other individuals their age (children or adults).  Comparing results with a normal population is what allows us to determine that a person is functioning lower than average, within average range, or higher than average.


I found this diagnosis to be very interesting for a couple of reasons.  First, it is good to have confirmation from the multi-disciplinary TEASC team that we really are looking at dementia.  Second, the offering up of agoraphobia is an interesting conclusion that we've never had suggested or considered previously.  Finally, the last paragraph provides an explanation as to why tests used for the normal population are used in connection with the intellectually disabled population.  We have previously questioned this and it is nice to have a logical reason.

Tuesday, September 18, 2012

TEASC Results

The TEASC committee with the Adult Special Needs Clinic at the University of New Mexico have sent us their evaluation results.  If you remember, they evaluated Lyn in early August while my family and I were visiting.  The results are in the form of a five page report which was copied to all parties who participated in the evaluation.  My copy arrived over the weekend.  I will not scan the report because it contains Lyn's full name in every paragraph.  However, I would like to share with you parts of the report.

Overall the report is a very interesting read.  It starts off identifying how Lyn was referred to the committee for evaluation.  The second section provides a narrative background description of Lyn, her interests, behaviors and living conditions.  The background provides specific examples of changes noted in Lyn such as the need to give instructions in single steps, the less stable walking gait, increasing frustration with favored hobbies and the loss of skills in using the washing machine or turning the car radio station.  The background concludes with

" (Lyn) was seen on 9/8/11 by (neurologist).  He diagnosted "Static encephalopathy with mile to moderate MR" and commented that anxiety or mood could contribute to symptoms of memory loss.  He suggested Citalopram for anxiety, but family declined that treatment.  On a follow up visit 9/28/11 (according to family) he felt pseudodementia was more likely, and that mood disorder was contributing to cognitive decline."

This is then followed by a brief medical history which lists the Lab/Imaging reports from 2011 and 2012.  The results of the Neuropsych/IQ testing follows along with drug allergies, current medications, family history, developmental/social history, psychiatric history, therapy, residential supports, community service providers, financial support, employment/day hab, school/training and observations.  While these sections are short, they are concise and accurate.

The last two sections are the Impression/Diagnosis and Recommendations.  Therein lies the meat of the document which I will include for you here over the next two days.  They are detailed and, I think, worth the read.

Stay tuned.

Monday, September 17, 2012

Security Blanket

I don't remember when Lyn used a security blanket.  I do remember she had a soft white blanket with a satin border that she loved.  I guess I never thought of it as a security blanket when we were kids and haven't really given it a second thought in the decades since then.  Mom remembers that Lyn would sleep with the blanket clutched to her chest once she learned to sleep in her own bed.

Lyn has been recovering from her recent bout of bronchitis.  During this time, she's reached for a fleece blanket and a teddy bear as she goes to bed.  She's not spreading the blanket over herself.  She's got others for that.  She's clutching it to her chest along with the bear as she sleeps.

It appears that Lyn is showing us another behavior that is a behavior abandoned in childhood.  We'll have to see what happens and if she continues doing this as she recovers more from her illness.  It may be a permanent change.

Friday, September 14, 2012


The picture was from the early 1990's after we'd returned from living in Montana for 18 months.  Lyn, I am sure, didn't want to cooperate and this is an ambush picture.  The camera was angled in Mom's lap to capture my sister's expression when she turned in response to being called.  Classic.

Lyn's on the mend.  It is slow but sure.  She was able to go to day hab by the middle of the week and actually went bowling despite a persistent cough.  Her scores have been pretty consistent for the past several weeks, hovering between 104 and 119.

She came home tired but happy from yesterday's bowling.

Thursday, September 13, 2012

Finding Early Indicators

One branch of research in the fight against Alzheimer's Disease is finding better ways to diagnose the disease definitively before the onset of recognizable dementia symptoms.  The earlier the disease can be diagnosed, the earlier the patient can be treated in the hopes of slowing the progression of the disease.  

One study indicates that evaluating a patient's executive functions may be a way to look for Alzheimer's.  Executive functions allow you to plan and organize, manage time and pay attention among other things.  Executive functions are compromised in individuals with ADHD.

Other studies hope to find that PET scans or fMRI may be able to detect markers in the disease earlier.

Yet another indicates that a blood test may ultimately be derived to  help diagnosis Alzheimer's.

One of the more interesting studies has found that amyloid clusters in the eyes as well as the brain and can be made to cause a probe to fluoresce when present.

Wednesday, September 12, 2012

90% Reduction

A dear friend of mine shared with me an article proclaiming that scientists have found a new treatment which reduces the amyloid beta protein by 90 percent.  It is a very hopeful and exciting article.

Unfortunately, it overlooks what the scientists actually did.  They "deleted jnk3 genetically" from the mice which serve as a model for Familial Alzheimer's Disease.  Jnk3 is an enzyme produced as a result of a number of stressors which allows the amyloid beta proteins to clump.  While genetic manipulation is not really a viable option yet for humans or even for mice who are already alive, it is a possibility when you are working with the embryo.  The resulting infant would carry the genetic modification and hopefully benefit from the change.

However, this does point out that drugs which could suppress the jnk3 enzyme may prove to be one option for preventing or slowing the progression of Alzheimer's Disease.  Suppressing jnk3 for therapeutic reasons has been under investigation since at least 2003.

Tuesday, September 11, 2012


Over the weekend, a fellow member of MetaFilter posted about the University of California Television site which provides the Osher Mini Medical School for the Public.  At the time of writing this post, UCTV has made available 32 programs about dementia and 42 if you search on "Alzheimer's".    

I think I'm in love. 

Monday, September 10, 2012

Sick Again

Lyn is sick again.  On Friday, she came down with acute bronchitis and pharyngitis.  It is moving into a sinus infection as well.  She's on antibiotics and has spent the weekend in bed sleeping or on the couch resting.  Neither Mom nor I can remember how long ago it was that she last had bronchitis.

Lyn is too sick to go to day hab today and will probably be home again tomorrow as well.

Mom wrote:

I felt like I was transported back 40 years.  As Friday evening progressed, things got worse with her.  By 7:30, she wanted to go to bed.  So I tucked her in.  About an hour later she was up, coughing so badly she was gagging.  She sat on the couch with me, sipping her apple juice.  No fever.  At 9, she wanted to go back to bed so I suggested we prop her up with pillows so she was sitting up.  She couldn't grasp what I was saying.  I said to sit up with her back against the pillows.  When she got on her bed, she slid down and had her head bent so the chin was on the chest.  I tried again.  After 3 times of getting her a bit higher, she finally was sitting with the back against the pillows.  By 10:30, she was out, coughing, tossing and turning.  Back we are on the couch with her leaning against me where she fell asleep.  

The first 3 years of her life, she had to sleep propped up or she would stop breathing.  I spent most nights in the rocking chair holding her upright.  Can't do that now.  I would have if it had been possible.  

Friday, September 7, 2012

I Need This

Today's post is selfish.  I need this smile today and have decided to share it with you.

This picture was taken in the last few years during one of their day adventures.  This was an early fall trip to El Morro National Monument.

Thursday, September 6, 2012


Lyn has loved music all her life.  She will sing along with a song she knows and likes.  She's not in the least self-conscious enough to stop herself from dancing in place anytime a tune inspires the bit lip and the shake of the fists.

Listening to the built-in reel-to-reel
There was always music in the house when we were growing up.  After dinner, Mom would often put on a Johnny Mathis, Patsy Cline or the occasional Elvis album while she cleaned the kitchen and we played in the living room.  She had a number of movie soundtracks including _The King and I_ and _The Sound of Music_.  I loved "Edelweiss" but I don't remember Lyn having a particular favorite.

We had a small, portable record player with a number of 45 records of kids songs, primary Sesame Street.  I remember hearing  Big Bird singing "abcdefghijklmnopqrstuvwxyz" multiple times a day.

Lyn put up with whatever I played in our shared room.  There were years when it was Top 40 and years when it was The Cure.  Ultimately, I think Lyn's preferences settled down to Country.

She has a collection of CDs and was delighted to realize that her computer will play them for her.  She likes to nose about the computer's files deleting things while listening to her music.

Wednesday, September 5, 2012

Dementia in Women

Yesterday, on my way home from running some errands, I noticed an elderly man and a middle-aged woman walking down the sidewalk together as he pushed a specialized wheelchair through our neighborhood.  I'm not normally in that part of our neighborhood on a weekday afternoon and have never noticed them before.  He and the woman were chatting.  I quickly deduced that she was a home health aid when I saw a wipe cloth in her hands and her position in relation to the chair.  I realized the wheelchair was occupied by a profoundly debilitated elderly woman.  She was nearly in a fetal position in the chair.

I do not know what has brought the woman into this stage in her life.  I assume she is the gentleman's wife.  She could have suffered a major stroke, have a degenerative neurological disorder or is in an advanced stage of dementia to just name a few of the possible scenarios.  I would not stop to interrupt their walk just to satisfy my curiosity.  What struck me, however, was that no matter what the cause was, she was taken outside for a walk.  It is a simple, ordinary act for the vast majority of us.  For this trio, it had to have been a bit of a challenge.  They had to maneuver her into the chair, secure her, and make sure they could meet any immediate need of hers which could pop up during the course of their walk.  Seeing them made me wonder how many care providers are able to get their charges out for a walk even once a week.  Seeing them made me wonder what will happen with Lyn in a year or two.

Unfortunately, in addition to there being more women than men with Alzheimer's Disease, the evidence is mounting that women with Alzheimer's show more deterioration than men.  Of particular note, when women have Alzheimer's they score more poorly than men do on tests measuring their verbal skills.  For years, it has been posited that women have greater verbal skills than men do but this is not necessarily true even in the healthy population.

Tuesday, September 4, 2012

Power of Suggestion

We've known for a very long time that Lyn is highly suggestible.  We have used it in her favor for the majority of her life.  When she was faced with a challenge, we would give her positive support, encouraging her to do her best and she would.  We worked very hard to not suggest to her that she might fail at something or that she wasn't good enough or capable enough to achieve her goals.

Sometimes, a coincidence would reinforce a suggestion which gave it more weight in her mind.  I remember in one of our drives through the open and rolling hills of Montana, that Lyn was chattering away.  She kept commenting that it was odd we hadn't spotted any pronghorn during this drive.  Mom responded that the animals could hear her talking and were shy as a result.  If she was quiet until we crested the next hill, Mom was sure that we'd see some pronghorn.  The hill was about a mile or so away and we drove it in peaceful silence for the first time that day.  We crested the hill and Lyn's jaw dropped as she spotted a large herd of pronghorn just ahead of us on the right.  Mom's expression was one of "Oh crud... that worked... Now what?!"  For the rest of that drive, each time we encountered the pronghorn, it was after Lyn had gone silent for a few moments.

Last month, we witnessed Lyn burst into tears during the evaluation with the TEASC team at the University when the psychologist asked her if she ever got sad.  It was sudden and happened as if a flip had been switched.  This weekend, we believe, it has happened again.

Mom and Lyn were having dinner with a couple of their neighbors who asked how the TEASC evaluation had gone.  Mom summarized the events of the day and included a couple of statements about the seizures that Lyn had experienced in her early teens.  The conversation carried on a few more minutes on to other topics when Lyn stated that at lunchtime at day hab, her head gets tight and she just sort of zones out.  Mom and the two neighbors were caught off guard.

Lyn's statement, raises the question of seizures and are they happening again.  Lyn has shown no signs of experiencing a seizure around Mom, her respite provider, her team or anyone else to date.  She didn't have any the week I was with her last month, either.  We think her statement was a result of the power of suggestion, having been inadvertently planted there by the conversation moments before.  However, her statement must also be considered as a real possibility.  Mom has contacted the day hab administrator to bring the topic to her attention, asking that if Lyn has any episodes they be reported immediately.  No one will bring the topic up around Lyn again.  However, they will keep a closer eye on her to make sure her statement was just that, a statement and not a report of a bigger problem.


Monday, September 3, 2012

Labor Day

Today is Labor Day.  Labor Day recognizes the social and economic contributions of those who work and gives us a day off from the work we do.

Helping disassemble an old shed.

Lyn may not work today, but she's never been one to shy away from helping out.  Her latest project is supervising Mom's selection and planting of several cherry sage bushes.

Enjoy your day.