Thursday, January 31, 2013

A Reader Request - Part 2

Continuing from yesterday's post on how faith has impacted our experiences as we watch Lyn's Alzheimer's, here are Mom's thoughts:

"This afternoon you asked how my faith helps me in this dementia journey.  I have thought about how to answer and hundreds of things have run thru my brain.  Hopefully this won't be too confusing to anyone.

I was recently asked if I was "mad at GOD" because your sister is mentally challenged and now has this terrible disease.  I answered quickly that there was a time I was very mad.  I think if any parent of a special needs child says they weren't mad is telling a lie.  I was mad, swore at HIM because there was no reason for my child to be less than perfect, because I didn't know how to take care of her and didn't want to deal with special needs.  I couldn't dwell on being mad for long because she needed my attention, my care, my love.  One night of no sleep I sat looking at her as she tried to drink more than one ounce I marveled at how cute she was, how wonderful her coloring was and how sweet a disposition she showed.  It wasn't her "fault"; nor was it mine.  

Because of my life long faith, I had learned there are times we just accept.  There are times when no one has an answer for the why.  I firmly believe HE has some plan and we don't know what it is.  Will we ever know?  Yes but not in this life.  I know that whatever that plan is HE has included me.  I have quit asking and now accept.  Would I change things for her if I could?  In a heartbeat.  I watched her and could see HIM teaching me patience, teaching me acceptance of others, teaching me not to judge others.  Have these lessons been learned?  Somewhat, I'm still working on it.  

Beginning in Sept 1978, I learned each day I had to turn the day over to HIM and that's difficult for someone like me.  I knew that as long as I trust GOD things will work out.  My Catholic faith teaches me that there are things that are accepted on faith.  So now, this horrible brain disease is robbing her of so much and it breaks my heart.  But, I've always prayed that HE takes her before me and it seems that prayer will be answered.  And that's ok.  I have faith in GOD, I have love for HIM and I trust in HIS wisdom.  I accept what is when I can't change it.   I thought I couldn't care for her but know I can, I did.  She is safe, healthy and happy.  

I will continue to ask HIM to help me each day and thank HIM each night.  I don't have to have concrete answers because I have faith.

Wednesday, January 30, 2013

A Reader Request - Part 1

Previously, I've invited you to offer up suggestions about topics you would like to see us address on Dementia be Damned.  I am serious about that offer and will gladly take reader requests.  I don't have all the answers, but I'm happy to ponder the questions you pose.  A friend of mine suggested that he would find it interesting to read a post about the role that faith has or has not played in this journey with Lyn.  To adequately answer this question, we need to have two posts because my answer for this question differs from Mom's answer.

If this topic is not a topic of interest to you, please feel free to skip today and tomorrow's posts.  Today, I will speak about my own view of faith and how it impacts my experiences with my sister and her Alzheimer's.  Tomorrow, Mom will provide us with her perspective.

First, let me start with a bit of context.  I was baptized and raised Catholic.  I am a 3rd grade CCD drop out.  I left the Church in high school.  I attended a nominally religiously affiliated liberal arts college and struggled with my faith for a number of years before settling where I happily am today.  I am a Humanist.

Yes, my Mom knows.  It has been obvious for a very long time.  I am not exactly subtle.

I'm constantly looking for the truth.  I want evidence and repeatable methods.  I want to understand you, Lyn, Alzheimer's and everything else that crosses my path.  I believe that it is a moral imperative to try and make the world a bit better for all of us.  If I can improve life for some one else, then I can improve it for all of us; just a little bit at a time.  This is part of why I became a foster parent.

As my sister moves through the stages of her disease, my need to understand and to try to make things better comes into play in several ways.  First, I want more information.  I search for the latest scientific papers and studies.  I read over an hour a day, most days of the week, on just the topic of Alzheimer's.  I then try to distill it for Mom and for you.  Second, I write this blog.  I want to document what we're seeing with my sister and I want to share the knowledge I'm gaining with anyone interested because maybe, just maybe, a connection will be made that makes a difference.  I want to record Lyn's life and help people understand why an intellectually disabled woman with Alzheimer's is worth writing about.  Finally, and probably most importantly, I just want to do what I can to take care of Lyn.

Lyn is my sister and I love her.  It matters to me how she feels and how she spends her time.  It matters to me that she's changing as a result of Alzheimer's.  I want my children to have a record of why Lyn matters and why it is so important to try to help her.  I don't want them to think that we can just hope for some miracle to happen.  I am not expecting a cure to be found in her lifetime.  However, I want them to see that sometimes, even when we know that we won't change the experiences of the person we set out to help, that we keep at the work we have chosen because there is value in caring and value in the work itself.

I have had several people say to me that they are praying for Lyn, for my family or for me.  I thank them.  While I don't pray, I appreciate the well wishes, the love, hope and support I hear in such statements.  I understand the comfort of ritual.  I just don't accept things on faith.

Tuesday, January 29, 2013

Energy Intensive

Our brains make up about 2% of our body mass.  It is actually a relatively small organ.  However, it is very demanding and uses as much as 20% of the energy we use in a day.  The demands of our brains are such that if a fly is starving, it will shut down its ability to record long-term memories.  As the plaques build in the Alzheimer's brain and the brain begins to fail, it is not able to use the energy available to it.


A research project is underway to stimulate the brains of individuals with early stage Alzheimer's using Deep Brain Stimulation (DBS).  Essentially, an electronic "pacemaker" is implanted so that electric pulses may directly stimulate the brain.  The hope is that this will improve the the functioning of the declining brain.

Perhaps, the stimulation will assist where the natural metabolic processes have lost efficacy.

Monday, January 28, 2013

Freshman Impacts

Higher education is close to my heart.  I worked at a college for years before leaving to support colleges and universities in the commercial sector.  I love when professors are creative and inspire their students to stretch their minds and abilities.  I love it even more when those students have an opportunity to see that their work can positively impact their community.

A group of freshman engineering students were assigned the task of designing and developing systems to stimulate elderly dementia patients.  The students had to research ways to stimulate the patients and the materials they would need to build their projects.  Their final designs were then delivered to a nearby nursing home where they were put to use.


Friday, January 25, 2013

Science Friday

My husband was listening to Science Friday on NPR last week and heard a clip he felt was worth sharing with you.  The clip, "Dementia Takes the Stage in 'The Other Place'", is an interview with playwright Sharr White.  He discusses his play and the research into misfolded proteins which sparked his interest in writing a play about Alzheimer's.

The play sounds very emotional and interesting.  If anyone is able to see it in New York, I would be very interested in hearing your thoughts.

Thursday, January 24, 2013

Resuming Regular Bowling

After the fall Special Olympics games and through the end of 2012, Lyn did not bowl weekly as practice for Special Olympics.  Day hab did continue some bowling.  However, it was not a weekly event.  Practice for Special Olympics has resumed.


So far, there have been three practices in 2013 and you can see that her scores are again all over the place with a spread of 70 points in December and January.  Since the start of the year, her high has been 135 and her low was 74.

We'll see how her scores progress in 2013 and I will continue sharing them with you.  Here are her 2011 and 2012 scores.

2011 Scores


2012 Scores

Tuesday, January 22, 2013

Even More Puzzles

A year ago, I wrote about Lyn's love of puzzles and her increasing frustration with them.  There were months in 2012 when she wouldn't pull out a puzzle at all.  Her frustration kept her from wanting to try to put pieces together.  Then, with the changes we're seeing more and more, it became more an issue of "out of sight, out of mind."

Last week, Lyn found a puzzle and decided to work on it.  Surprisingly, she sat there for over an hour.  In that hour, she was able to successfully put three pieces together.  The puzzle was from a box that had 500 pieces which made up 3 different puzzles.  After an hour sitting and staring, she put it away in frustration.  She announced to Mom that she wanted to do another on.  When Mom suggested a puzzle with 300 larger pieces, she rejected it saying it frustrated her too much.

Lyn picked out a second puzzle and put it away for the same reason within 5 minutes.  She tried again with a third before giving up for the night.  The puzzles haven't come back out since.

They have been put away and are again out of mind.

Monday, January 21, 2013

Hubris


It has been two months since Lyn saw the new neurologist.  He had promised to send Mom information about medication which she and Lyn should consider.  He also promised to send Mom a copy of his report.  He had asked Mom to leave with him her copy of Lyn's MRI images which were on CD.

Since Mom hadn't heard from him in so long, she reached out to his office last week after learning that Lyn's primary care physician had received the report from the neurologist over a month ago.  With disappointment, we have to report that the CD with the MRI images appears to be lost.  The neurologist never sent a report to Mom and his report to Lyn's primary care provider indicates that Lyn doesn't have Down's Syndrome and that he sees no logic to support an Alzheimer's diagnosis.  

Mom is, understandably, deeply frustrated.  Many years ago, the medical community didn't want to believe it was possible for individuals with Down's Syndrome to have Alzheimer's.  Now, it is accepted  that having Down's places the individual at high risk for early on-set Alzheimer's.  I believe what we're running into is much the same thing.  

Lyn is intellectually disabled.  She's had brain damage from birth. Thus, they believe, this is a natural progression of her brain damage.  The two neurologists who have examined her cannot see beyond their own experiences with or their  preconceptions of the intellectually disabled to see that she can have both an intellectual disability and Alzheimer's Disease.  I believe hubris is in play here.

If this was a natural progression of her brain damage, wouldn't we have seen decline through out her life?  She learned and achieved for decades, even after the year of seizures.  If this was just her intellectual disability, would we expect to see dramatic loss of life skills in such a short period of time?  For example, when I visited in December, she was only occasionally asking Mom to help her tie her shoes.  Now, she can tie the right shoe but not the left.  She has even had to switch to a different bowling bag because the one she had was too difficult for her to manage.  Her new more simple bag was a birthday gift  last week.  

No.  These changes are not just a result of her intellectual disability.  They is not a result of her "faking it" or some Munchausen-like report from Mom.  They are the result of her brain dying due to Alzheimer's.

Friday, January 18, 2013

Fear Less; Hope More

Pauline Phillips was a beautiful woman who provided a tremendous amount of character to her writing over the decades in which she tried to make the world a more genteel place.  You might have known her as Abigail Van Buren or Dear Abby.  She worked under the pseudonym from 1956 until her retirement in 2002 which was a result of her Alzheimer's diagnosis.  She passed away yesterday at the age of 94.  She leaves a lasting legacy in her words and in her children who have become advocates in the fight against Alzheimer's.

As the first part of her favorite toast states, may we "Fear less; Hope more."

Thursday, January 17, 2013

The A4 Trial

The NIH announced earlier this week that it has funded four studies overseen by the Alzheimer's Disease Cooperative Study (ADCS).  All four studies are worth reading up on but one jumped out a bit more to me.

One study will see if drugs will help prevent Alzheimer's in 1,000 elder patients who have already been found to already have amyloid plaques and are showing subtle cognitive changes.  The study's hypothesis is that the drugs will clear the plaques and reduce the cognitive decline by 25-30%.  This study is hoping to administer the drugs earlier in the disease progression.  The thought is that earlier intervention will produce greater positive results in preventing cognitive decline for the patients.

My question is how these 1,000 patients were identified for the study.  Were they being evaluated for their subtle cognitive changes before the scans were done which lead to the finding of abnormal amounts of amyloid plaques?  Or where the plaques found because the patient's brains were scanned for other reasons?  It may seem like a small question, but it is significant.  If the patients were already symptomatic, then the study's administration of the plaque clearing drugs may be too late.


Wednesday, January 16, 2013

Confirming History

In 1901, Aloysius Alzheimer started following the case of Auguste Deter, a 50 year old woman, who was showing signs of dementia despite her early age.  After she died in 1906, he published his findings and introduced the world to Alzheimer's Disease.  While his description of the disease has been refined over the years, he correctly identified it as a specific condition different than other neurological issues.

After her death, Alzheimer had Deter's brain brought to a lab where he prepared slide to study.  The stains applied to the slices of her brain allowed him to see the plaque which we associate with this disease.  The slides were were lost and were not found again until 1997.

Last week, research was published which confirms that August Deter had Alzheimer's.  DNA was extracted from some of the brain samples preserved in the slides and analyzed.  The results show a single genetic mutation caused her early on-set Alzheimer's.

Tuesday, January 15, 2013

Three Day Celebration

Lyn's birthday celebrations continue today.

She is excited that a friend of the family will pick her up from day hab today to take her out to an early birthday dinner.


She was very surprised when Mom and their neighbor returned to day hab today with the pizzas and cake for lunch.  She was the center of attention and was her most delightful self.  She decided to help make sure that the staff and other day hab clients all got enough to eat.

This was better than how she responded to the neighbors helping her celebrate Sunday night.  Even though she was at home, she was anxious and surly.  Fortunately, they know what's going on with Lyn and are not offended when she's having an off day.

I spoke with Lyn last night and wished her a Happy Birthday.  She was so animated and excited.  She told me that the Target gift card I sent her was just the right size.  When I asked her age, she correctly told me 42.  I acted shocked and said "You're older than me!" as if I hadn't known that before.  She just giggled.

Monday, January 14, 2013

They Say its Her Birthday

Today is Lyn's birthday.  She's 42.


Two neighbors came over for dinner last night and helped her celebrate.  Today, Mom is surprising her with a pizza party at day hab.

Happy birthday, Lyn.  May it be a good day!

Friday, January 11, 2013

Contemplation

Earlier this week, Lyn decided her stomach hurt and she wanted a bubble bath to feel better.  This is nothing new and is a long standing practice of hers.  After a few minutes, Mom noticed the hall light was on.  She got up and went to find out why it was on.  The sun had not set fully yet and Lyn's bedroom is right next to the bathroom.

Mom came around the corner and found Lyn standing in front of the linen closet.  The door was open and he was holding her pajama bottoms in her hands.  Mom asked if she needed help.  Lyn said she didn't and she was getting ready for a bath "and might need something."  Mom just stood back and waited as Lyn continued just looking in the closet.  The closet has bed and bath linens and extra toilet paper.

After a few minutes, Lyn smiled, closed the closet door and went into the bathroom.  Her new towels were hanging in the bathroom already.  Lyn never decided she needed something from the closet.  Behaviors like this will become more common as her Alzheimer's progresses.  She may not be able to give more of an explanation than she did this time.

Actually, I think she did pretty well even if she wasn't sure why she was just standing and staring into the closet.  Honestly, it doesn't really matter why.  She wasn't upset and that was the important part.

Thursday, January 10, 2013

Want a Daisy?

I just hung up from checking in with Mom and Lyn.  After Lyn was done talking to me, she handed the phone back to Mom with the usual "She has to go now.  She's tired."  I'm apparently tired a lot.  Mom takes the phone and finds me on the other end laughing again.  It is the same with each phone call.  

What has changed recently is the open disapproval that sets in at this point.  Mom and I continue chatting but Lyn has finished an has decided that we need to be finished too.  She has started glaring at Mom and after a while will say again that I need to go because I'm tired.  If Mom tries to distract her, she increases the use of The Look.  It really has reached a point where it is non-stop.  If Mom and I talk for another 45 minutes, Lyn glares and mutters for 45 minutes at least.  

A couple of times, Mom commented that "if looks could kill, I'd be dead."  That upset Lyn even more.  So, now Mom asks if I want a daisy.  When she mentions daisies, I know she's telling me that my sister is being her lovely and charming self.  

Lyn hasn't figured out that referring to a daisy is calling out her glares.  She's not upset when she hears Mom say this.  So, it works out.  She can continue giving The Look and Mom and I can chuckle about it without hurting her feelings.

Wednesday, January 9, 2013

Funding Research

One of the goals for Dementia Be Damned is to share with you information about research being done on Alzheimer's Disease.  Around the world, scientists are working to identify the causes of the disease and create treatments which are actually effective.  They're not volunteering their time.  The work that they're doing is complex and requires many resources in people, instruments and time.  This means that Alzheimer's research is expensive.  Funding for the research comes from different sources.

Large pharmaceutical companies such as Eli Lilly and Merck have an interest in investing in this research.  If they fund the research that leads to a successful treatment, they have rights to that drug for years to come.  The ever growing number of Alzheimer's patients means that many more who could benefit from an effective drug and increase the company's profit from its sale.

Government agencies such as the National Institutes of Health and National Institute on Aging provide financial awards and grants to applicants who successfully petition for available funds.  The funds are limited and the NIH is not able to fund each submitted research proposal.

Another source of funding is through non-profit organizations or private foundations.  The Alzheimer's Association is a non-profit organization that provides research grants in the hope that a cure may be found.  When you give a donation or collect sponsorships to support an awareness walk, you're providing funds to the association that they use to make those grants.

The foundations are usually the result of a a small group of individuals who pool their resources to start an organization which works to solve a very narrow set of problems.  In this case, it is finding a cure for Alzheimer's.  While these foundations have a philanthropist or two at their core, they, of course, solicit more from potential donors to expand their funding potential.  One such private foundation is the Cure Alzheimer's Fund which uses a venture capital approach to funding research.   This approach funds immediate research needs and does not grow an endowment or off-set budgetary expenses at a university.  Such an approach lends itself to higher risk research in the hopes of faster results.

Tuesday, January 8, 2013

Three Between Us

This summer when my family and I visited Mom and Lyn, I took my children to Explora on one of the mornings.  Lyn didn't come with us because it was going to be too loud and chaotic.  It is too loud and chaotic on a good day for my preferences and that day was particularly crazy because a local radio station was providing free admissions for the first two or three hours the facility was open.  (We didn't know when we planned our trip.  Had we, I probably would have avoided it.)

One of the few places in Explora which didn't have a mass of boisterous children was the gift shop.  While I lingered there, I spotted a petri dish of giant plush microbes and realized it was just right to share.



Mom jokes with Lyn that some days, between the two of them, they have at least two brain cells.  Now they have at least three.  Mom keeps her plush neuron by the computer.  I keep mine at my desk cozied up to a plush white blood cell.  (Don't ask.)

Monday, January 7, 2013

Feel Free to Say Hi

A friend from high school sent me a private message on FaceBook last week to tell me that he had spotted Mom and Lyn out in town.  It turns out that he actually spotted Lyn and her respite provider out for dinner.

My friend didn't approach to say "Hi" despite being tempted.  The hesitation was a result of not wanting to cause Lyn any discomfort if she didn't remember him.   I've assured my friend that the next time he sees them, he should feel free to say "Hi."

Lyn and Mom are frequently stopped when they're out and about by people who recognize Lyn.  She's met so many people over the years through the years as a result of Special Olympics or from working at Wendy's that she has no problem welcoming people who stop to say "Hi."  She may not be able to say where she met them or when, but she's so social that she'll gladly chat and wish them well.  She's not uncomfortable if she doesn't recognize someone.  The person came up to speak to her and that's all that matters.

Lyn really never understood the concept of "stranger" and figures everyone is a potential friend.  It is a good way to approach life, I think.  It assumes the best in everyone and most people really are as kind as they seem.

So, if you're ever out and spot Lyn with Mom or her respite provider, introduce yourself and say "Hi."  You'll make them smile.

Friday, January 4, 2013

I Was Here

On New Year's Eve, I woke up from my nap on the couch long enough to catch a single song being played on the television as my husband watched the countdown to midnight.  It was footage of Beyonce singing "I Was Here" at the United Nations for World Humanitarian Day.



I've had the song swirling around my head ever since.  Maybe it was how statuesque and striking Beyonce is in the above footage that first caught my attention.  She looks almost like a superhero in white standing beneath the UN's emblem.  However, the chorus is really was resonates with me.

I was here
I lived, I loved
I was here
I did, I've done, everything that I wanted
And it was more than I thought it would be
I will leave my mark so everyone will know 
I was here

When I talk with friends, colleagues, family or total strangers about Alzheimer's Disease, I often get a lot of fear expressed.  I think I've mentioned this before.  They tell me of their fears of loosing the thoughts and memories that they use to define themselves.  They speak of the fear of being aware of the decline.  I don't hear people expressing fear of becoming a care giver to an individual with dementia, interestingly.

I believe that we all want to be remembered in addition to maintaining our own memories.  We want to know that our lives mattered.  If we cannot remember ourselves, then who will remember us?  Who will remember for us?  If we fade from the world before our bodies give out, if our loved ones step away from us because of their own discomfort with our dementia, what mark will we have left?  

If that is the case, then we have waited to long.

You see, Lyn doesn't ask herself these questions.  She never has.  She's never worried about what mark she will leave behind or if people will remember her.  She didn't strive to achieve a level of recognition beyond what the moment brought.  

She was delighted to cite the Athlete's Oath at the start of Special Olympics games.  She was happy to clean your table or restock the cups when she worked at Wendy's.  She was excited to become an aunt and hold a baby.  She danced and sang and squabbled and engaged in each day.  She's achieved more in her life than any of us ever thought she could.  

Lyn has marked several of us.  I suspect there are more than I know who have been touched by meeting her once or knowing her for years.  

Perhaps, dear reader, you have been as well. 

Thursday, January 3, 2013

MRI Advance

Over the holidays, it was announced that an exam using an MRI can now detect the differences between Alzheimer's and frontotemporal lobar degeneration.  The two disorders show similar symptoms.  However, using the MRI successfully to differentiate between these two possibilities is a non-invasive technique which is easier on the individual going through the diagnostic process than being subjected to a lumbar puncture.  

Additional Information:
Is it Alzheimer's or Another Dementia? MRI Scan can tell
Can MRI Screen for CSF Biomarkers in neurodegenerative disease? (Abstract)

Wednesday, January 2, 2013

Alzheimer's Awareness Video

Mom and I have recently joined Memory People, an on-line support group for those dealing with dementia.  One of the things that is different with this group than with other support groups is that membership is open to the individuals with dementia as well as their care givers.  I really like this because it allows us an opportunity to learn from multiple perspectives and to hear from both sides of the disease.

The group was started by Rick Phelps, a gentleman who was diagnosed with early on-set Alzheimer's at the age of 57.  He's put together a video to bring awareness to the topic of Alzheimer's and I thought I'd share it with you today.



Thank you, Rick!

Tuesday, January 1, 2013

Ice Cream

Lyn came home from her time out with her respite provider and was excited to tell Mom about something she noticed while they were out.

Lyn stated, "You know, ice cream is cold.  They opened a new store."  Mom took a guess that a new DairyQueen opened on the west side of the city.  "No," Lyn corrected, "it is the stone place."  "Ah, yes.  Cold Stone." was Mom response.  She was pleased to have made the connection with Lyn.

"No, I'm talking about STONED ice cream." Mom asked Lyn to show her where the new store was when they were out because she'd like to try it.  Lyn promised she would if Mom liked "stoned ice cream."

The following day, Lyn was highly repetitive and interrupting.  When Mom and I spoke, she joked about how a little stoned ice cream might just help.

Happy New Year!