Friday, August 29, 2014

Sage Test Reminder

I've noticed myself struggling to remember a word here and there.  Recently, it took me a minute to remember the name of Richard Dawkins and at work I completely forgot the name of a form I wanted to show a colleague.  Of course, I found the form after our meeting was over and was able to send it to him.  I also have realized that I may ask a question more than once of my husband or my eldest and, I hate to admit, I have actually forgotten small conversations that my husband and I have had in the past year.  So what does this mean?  Is it time to worry?

I have also been asked by a couple of people this week if I was concerned that I am at risk for early on-set Alzheimer's because of my sister's diagnosis.  As I explained to both people, we don't know if Lyn's Alzheimer's is connected to her intellectual disability, a genetic mutation or a family trait.  Alzheimer's has been evident in my Grandmother and her sisters before they passed.  Their Alzheimer's, however, was not early on-set and the ladies all passed well into their 80s or 90s.  Lyn is the only family member that we know of with early on-set Alzheimer's.  As a result, I tend to suspect it is either a mutation or connected to her birth and her disability.

In both conversations, one was with one of my doctors, the individual pressed on the issue asking me if I forgot things that I shouldn't.  I laughingly gave the examples cited above and said "...but we all do that."  I may misplace my keys but I still know what they look like and when I find them, I know what they are.  When I was groping to find the name of Richard Dawkins, I stated "Oh, you know!  He's been on 'Inside Nature's Giants' and is friends with Christopher Hitchens."  Don't ask me why Mr. Hitchens name came to mind when I'm much more familiar with Mr. Dawkins work.  It was just the connections my brain was trying to make to get to the name I wanted.

My doctor asked if I could take a test that would give me insight, would I?  I told her about the Sage Tests and promised to take one again.  It has been about 8 months since the last time I took the test.  Previously, I took test 4 and this time I took test 2.  After taking the two tests, I can see how one grading schema can be applied to all four tests.  I am pleased to report that my score has not changed.

There's nothing for me to worry about.  These minor memory burps are not early signs of dementia.  These are the signs of a person who is juggling a full-time job, an active family, the blog and other personal hobbies.  These are the signs of a normal person who is choosing to focus on some things more than others.

Wednesday, August 27, 2014

Down Syndrome Provides Insight into Alzheimer's

It has been known for years that individuals who have Down Syndrome have a higher rate of Alzheimer's, particularly early on-set Alzheimer's than the rest of the population.  Down Syndrome is also called Trisomy 21 because the disorder is caused by three copies of the 21st chromosome.  It appears that one of the genes on the 21st chromosome is involved in the production of Beta amyloid, an amino acid which has been implicated in the production of amyloid plaques in the brain.

In all the reading I have done since Lyn's diagnosis, I read time and again that the rate of Alzheimer's is particularly high.  However, what I did not previously pick up on is that by the age of 40 all individuals with Down Syndrome have the pathology of Alzheimer's.  This means that they have the amyloid plaques in their brains even if they are not yet demonstrating clear cognitive or memory issues.  Perhaps we have previously missed this because so many die very young as a result of cardiac issues and, until now, they really have not been the focus of concerted or widely available research.  What research has been done has been mostly focused on how to improve their cognitive abilities or reverse other effects of the syndrome.  This may be changing.

Scientists have enlisted the help of individuals with Down Syndrome in a study to see if a new drug may be used as a preventative therapy.  One of the issues with testing such a drug has been identifying someone who may develop Alzheimer's years in the future when there is no obvious indicator for them to have it now when such a therapy may be most effective.  Could I develop Alzheimer's in 10, 20 or even 40 years.  Sure.  Would I be a good candidate for a long-term study into a preventative drug?  Not without significant testing to see if I'm already at risk though I'm not showing symptoms.  An individual with Down Syndrome, however, is a great candidate because they are essentially guaranteed to get Alzheimer's if they live long enough.  We see Alzheimer's in a couple of people my sister has known through Special Olympics and, like her, they are only in their 40s or 50s.


Tuesday, August 26, 2014

Unplugged and Instructed

We keep Mom up and running with a laptop.  It is a retired corporate item which is slicked and refurbished before we get her set up with it.  Every few years, we replace it with a newer refurbished item.  When we were there earlier this month, we took her another laptop to replace one that she's had for at least 3 years.  It worked great for a week after our departure and then it failed.  As a result, Mom's forceably unplugged until she receives the older one which was brought back with us.

Mom's gone through a bit of withdrawal and Lyn's on a tear about the computer problems being Mom's fault.  Lyn told Mom that my husband had gotten the computer set up right and that Mom needed to just follow his instructions on how to handle it.  Mom clearly had it plugged in wrong.  Lyn stridently insisted that it get unplugged and plugged back in properly.  Mom unplugged everything in front of Lyn and plugged it back in.  The computer didn't turn on despite these efforts.  Lyn's response was just "Oh."

Lyn's not limiting her instructions to Mom to computer issues.  Mom had sneezed and Lyn came quickly out of her room to teach Mom the proper way to sneeze.  Mom listened to Lyn's instructions and was able to confirm that she had followed proper procedure.  Lyn was not convinced.

Monday, August 25, 2014

On Pluto

Finding first-person accounts of Alzheimer's disease or other dementias is becoming increasingly easy.  While the number of individuals who have been diagnosed with dementia has been increasing for several years, I think part of the increase in these accounts is a result of more people writing about their experiences.

One of the first I encountered is While I Still Can by Rick Phelps.  Rick was diagnosed with Early On-Set Alzheimer's when he was about 54.  Rick has created a very active support group for individuals with dementia or individuals who care for them called Memory People.

One of the most recent accounts is titled On Pluto: Inside the Mind of Alzheimer's by Greg O'Brien.  Mr. O'Brien is a reporter who was diagnosed with Early On-Set Alzheimer's a couple of years ago.  Using his professional skills and his knowledge of Alzheimer's acquired from watching a couple of his relatives, including his mother, pass from the disease, he decided to write about Alzheimer's from his own perspective.  On Pluto provides you several ways to gain access to Mr. O'Brien's perspective because there is a book, a movie and a blog.

Who better to talk about Alzheimer's than those experiencing it.  Check these out.

Friday, August 22, 2014

Bowling While Angry

Lyn has, for weeks, talked smack about going bowling and beating me.  She was insistent that we add bowling to the list of activities for our visit.  We, of course, obliged.

We planned the day to start with an early trip to the zoo, lunch at Tim's Place and then round it out with an early afternoon bowl.  Lyn wanted to bowl first but was mollified when we pointed out that the bowling alley would be cooler than the zoo in the afternoon.  While we were at the zoo, she started suggesting we go to lunch after we bowl.  We pointed out that my youngest was hungry and should eat first.  As the morning progressed, she got more antsy to bowl and more irritable with me.

Ah well.  No surprise really.

When we made it to the bowling alley, it was still an early hour.  However, I was fighting a major headache and the thought of 2 or 3 games was just brutal.  When Lyn started telling Mom we had to pay for at least two games, I quietly held up one finger over her shoulder, begging for mercy.  By this point, Lyn was seriously mad at me and the smack talk escalated.

She paid for her game and marched to her lane.  She got madder when she realized it would take us a few minutes to rent shoes, pay for our game and find balls that we could manage.  We're not the bowling enthusiasts that she is, after all.  By the time she could toss her first ball, she was in full arrogance and anger which she directed towards me.

I made the mistake of trying to take her picture and she snapped at me "Not now!"  If she had known how to flip her middle finger, she would have.  Instead, she flipped her whole hand at me.  I was startled enough that I lowered the camera as I pressed the button.  The shutter snapped as she whipped around to wait impatiently for her ball.

I put away my camera before wrapping my arms around Mom's neck and hugging her.  We both quietly chuckled as she apologized.  "She can be a real brat sometimes."  "Yes.  I know.  I won't take it personally though."  I laughed.

As the game progressed, she kept it up.  She would loudly challenge me each time I went to get my ball, trying to rattle me.  Normally, she's not one to show poor sportsmanship.  She historically has cheered others along while still being competitive.  This day, if we acknowledged her strike, she'd smirk and say "I know."  About the 8th frame, I finally looked over my shoulder after getting my ball and being verbally abused again and just said "Enough" and gave her my best Mom glare.  (You know the one.  It is the one that a misbehaving child can sense from atop a display they've climbed three store isles away and it makes them look in your direction where you mouth the words "Get down" and the child complies without actually hearing the words.  Yeah.  That one.  I learned it early and well.)  She snapped her mouth shut.

We wrapped up the game.  My head was feeling a bit better and I could have gone for a second game but wasn't interested in dealing with the attitude anymore.  So, we wrapped up.  Lyn won.  She beat us all by at least 9 points.  Some of us had a much larger deficit.  However, she was too angry to accept our congratulations.  She was even mad that she had to wait for the rest of the family to finish up on the next isle.

We had tears in the car on the way home.

She was hateful to me but it was only me towards whom she was hateful.  She didn't act out towards my family or Mom.  Mom usually catches the brunt of it.  From her perspective, it had to have been hard.  All she wanted to do was beat me at bowling.  She did.  However, the day didn't go exactly as she wanted and she struggled with it despite enjoying the three places we had grouped together for the day.

Thursday, August 21, 2014

Gran Quivira

We braved an hour and a half drive from Albuquerque out to Gran Quivira.  Gran Quivira is the largest of the three ruins which are collectively known as the Salinas Pueblo Missions.  Gran Quivira is also the furthest from Albuquerque.

The day was beautiful and called for us to hit the road.  New Mexico is having its first actual monsoon in years and is as lush as I can ever remember seeing it before.  The grass was tall and there was a profusion of wild flowers.  There were pollinating insects galore.  We were struck by the variety of native bees and thrilled to see hummingbird moths for the first time.  Even the park ranger who has worked there for over 20 years commented that he had never seen so much green there before.

On the hill at Gran Quivira, looking West
 The paths around the site are paved and proved easy for Lyn to manage with the use of her walking stick.  With all the sunlight and open spaces she was comfortable walking around.  As a result, we were able to stroll through the ruins, enjoying the sights.  (Later in the week, she struggled to stay calm in the Museum of Indian Arts and Culture in Santa Fe because the lighting was lower and done for theatrical effect.)

One of the small kivas sits beside some of the housing ruins.
Lyn humored us as we toured the ruins before sitting down for our picnic lunch.  She had wanted to eat first but didn't argue.  As we came down the hill, Lyn took a moment to rest on one of the benches beneath a tree.

As she rested, the park ranger came down the hill on his way back to the guest center and greeted us. My eldest had a question and took the opportunity to ask.  We learned that the piles of rocks in each of the ruin's rooms covered a 50 gallon barrel which is buried in the sand that has been back filled into the rooms.  This is a crude drainage system, the ranger explained.  It is necessary to prevent the walls from being damaged by the ground washing away in heavy rains.  He admitted they were infrequent except for this year.

This exchange took just a couple of minutes and before it was over, Lyn had gotten up and walked determinedly away.  She did not even attempt to interact with the ranger.  That was deeply surprising to Mom and me given how much she likes to be the center of attention.  She had swung her cane up parallel to the ground was was making haste down the hill towards the car, never once looking back to see if we followed.

Wednesday, August 20, 2014

Walking with the Stick

Months ago, I told you that my former step-father had made Lyn a walking stick to help her with her balance issues when she is out and about.  When he had finished it and sent it to her, she refused to show it to me.  All I knew was that she had requested a riot of colors and that she was keeping it in her room to keep it clean.

When it was suggested that she use it on the day trips to Santa Fe or around town with Mom, Lyn refused saying she preferred to hold onto Mom's shoulder.  Mom went so far as to ask my step-father to speak with Lyn and encourage her to use the walking stick.  He did.  He talked about Mom getting older and that Mom might not be able to handle Lyn hanging onto her shoulder.  He asked Lyn to promise to use it.  She begrudgingly did and he thought the issue was solved.  It wasn't.  She stormed out of the room angry and still refused to use the cane.

Mom and I talked about this the night that my family arrived for our visit.  We decided to apply a bit of peer pressure and enlisted the help of my husband to convince Lyn to use the stick.  We assured her it could be cleaned.  It was made for use, after all.  We told her Mom may be too distracted corralling my little one that her shoulder may not be available.  We also pointed out that the paths would be uneven and the stick would help her.  Lyn eventually gave in and agreed to take it with us to Tinkertown the next morning.

We did not exaggerate or lie to her.  As you can see from this picture of Tinkertown's entrance, the place is not your standard or well laid-out museum.

It has narrow paths in the building.  The floors are uneven and patched used license plates.  The lighting is poor and the construction is a hodgepodge of pieces cobbled together.

The cane was perfect.  She was able to use it without a problem and she managed without once having to reach for Mom's shoulder.  She didn't always let it touch the ground, sometimes carrying it a couple of inches above the ground.  However, it was there when she needed it.

It is a beautiful cane made of hand turned dark wood with a tight grain.  The handle is carved to look like a toucan's head.  My step-father did a very good job on the cane.  We kept insisting that Lyn use it with each trip we took during our week.  Hopefully, she'll start to use it more.