Wednesday, July 27, 2016

A Bug in fMRI

Functional MRI (fMRI) scans have been used for years in trying to study and to diagnose Alzheimer's in living patients.  This goes back at least 16 years.  Thousands of scans have been collected and used in many studies looking for a prevention or treatment of the disease.  Unfortunately, a bug has been found in the software which helps interpret the scans which may cause those scans to now be unusable at worse and suspect at the least.

The software divides the brain into tiny units called voxels.  It looks for clusters of voxels showing activity.  The problem is that the sheer number of voxels turned out to be significantly more than the software could handle which results in false positives.

There are three different software packages involved and there's a 70% chance of at least one false positive.

The impact on patients who have been misdiagnosed is huge.

The impact on the studies relying on this data is huge.

Tuesday, July 26, 2016

Checking In

Lyn has developed a new habit.

When she's out with her Community Access or respite providers, she will call Mom.  She will tell Mom about an accident she saw, provide a traffic report and encourage Mom to go a different way (even if Mom's not going anywhere) or to just check on what time she's to come home.  Mom describes her voice as unsure.  Mom recognizes Lyn's seeking assurance and comfort.

It's a small change but it is notable.

Wednesday, July 20, 2016

Yard Sale

Dayhab had a yard sale this weekend and Lyn wanted to participate.  She went and had a great time.  She helped set up and even sold a few things, earning $7.  She was delighted.


Tuesday, July 19, 2016

SIS 2016 Reschedule

The SIS review for Lyn was originally scheduled to happen this Thursday.  The person who will conduct the re-evaluation only needs to meet Lyn for a few minutes.  Lyn will be picked up by her Community Access staff a few minutes after the start of the session so that she can go enjoy herself without sitting through the session.  The evaluator wants to speak with individuals on Lyn's team who have known her for at least 3 months.  Lyn's case manager is not available and so they have decided to reschedule to early August.

I'm actually very happy they have rescheduled.  There was no way for me to participate this Thursday because I have to visit one of my clients.  However, I happen to have scheduled a day off that coincides with the reschedule date.  I've offered to participate via Skype.

I cannot imagine how difficult this whole process would be without the available technology that we use.  It has been a while since I've been able to participate in one of Lyn's meetings and I hope the evaluator is open to me being in the room virtually.

Monday, July 18, 2016

Want

An exchange between Mom and Lyn.

L: Know what I've always been wanting?
M: No.  What?
L: Either a poster or a shirt.
M: Ok.  But what kind of poster or shirt?
L: Star Wars.
M. Really?  I didn't know you like Star Wars.
L: You don't know me a lot.  I've always loved Star Wars.

Mom says she still has a lot to learn about Lyn.

Thursday, July 14, 2016

The Freezer Incident

Recently, Mom stepped into her garage and discovered that at some point in the prior week her chest freezer had died.  It's been hot in New Mexico with temps above 100F.  She has no idea how long the freezer had been thawing other than long enough for all of its contents to be ruined.

She had to scoop out the contents and hope it didn't exceed the trash container's limit for the city to take.  Fortunately, it was collected.  The freezer was cleaned out and scrubbed down to minimize the smell before it was rolled to the curb for collection.

Lyn was returning home from Community Access when it was taken away.  She announced to Mom that "A big white truck with two men took the freezer.  There was writing on the truck but they got it."  Mom tried to let Lyn know that they were from the city and were supposed to take it.  Lyn wasn't convinced and informed Mom she didn't know what she was talking about.  Over the next two hours, Lyn repeated the conversation three more times.  At one point, Mom told her that it was good the freezer was gone and it would have even been fine if the men had stolen it.  Lyn did NOT like that thought at all.

Mom's got a new freezer and, once the temperature drops to more reasonable levels, she can start her holiday baking.  Her freezer is normally stocked with baked goods so that if she needs cookies or muffins she has then at hand.  Perhaps I can convince her to send me a loaf of Ethiopian Honey and Spice bread this year.  It is divine!

Wednesday, July 13, 2016

Nighttime Confusion

Lyn's nighttime confusion and sleep cycles disturbances are becoming more evident.  Lyn's doctor has suggested that Mom try to keep Lyn up later in the evening instead of letting her give in an go to bed at 4pm.  We're trying to keep her on a more normal sleeping schedule in the hopes that she'll sleep more soundly at night.

If she gets up in the night, she's just as likely to come see what's going on as she is to go back to bed. When she comes into the living room, the resulting conversation makes it evident that she thinks it is supposed to be morning.  She will ask if the sun is about to come up.  She will indicate that she needs to get dressed for the day.  She has even made her bed before leaving her room and it may be 9pm when she gets up.

Confusion over night and day is, unfortunately, common with Alzheimer's.  We've got the black rugs in front of the doors now and have convinced her they are there to catch the dirt or to block an air draft.  There may come a time when we have to add door alarms.  We will continue to evaluate the need for that.

Tuesday, July 12, 2016

Word Search

Lyn has had a couple of doctors appointments.

Her optometrist followed up on her different pupil sizes.  He can't explain it.  However, he indicates that if Lyn's pupils were different sizes as a result of something significant, she would have taken a turn for the worse by now.  That being said, Mom's to go to the ER if there is drifting, drooping or sagging of either eye or eyelid.

Lyn also had her quarterly visit with her primary physician.  She has not lost any weight since the last check.  She was having a pretty sharp day.  At the end of the year, Lyn will have blood work which will see if she's pre-menopausal.  She's having shortened intervals between menses and hot flashes.  Lyn described it by fanning herself and flapping her arm.  She's of the age to be in this stage even if it weren't for the Alzheimer's.

Lyn told her physician that "Sometimes, the word search in my head doesn't really work."  Both Mom and the doctor commended Lyn for her description and tried to not giggle.

Monday, July 11, 2016

Decoupage

A week can make a difference.  How do I know?  On Saturday, I found myself in the fabric store with two patterns and seven fabric selections before ending up at the grocery with enough fruit for making jam.  When I find myself being creative, I feel my brain kicking back in.  It took the rest of the week but I'm feeling more like myself again.

I received some lovely comments from readers.  Thank you very much for the supportive and understanding notes.

Lyn is doing very well.  She has started working with her Community Access service provider.  She's happy but comes home exhausted.  Lyn wants me to use this picture of her because "it's a great one of me!"


Of course, she's right.  

They decoupaged a box as one of their first activity choices.  Lyn proudly showed off the results when I spoke to her this weekend.  

Wednesday, July 6, 2016

Taking This Week

This will be the only post this week.

I've been sitting in front of my laptop for at least two hours today thinking "I need to write something."  The truth is that I don't have a post in me about Lyn or Alzheimer's.  I need to rest my brain for a bit.  I took the day off from work to recover from our holiday weekend travel and found myself just sitting, wanting to find the moment of stillness, the opportunity to just breathe and not worry about who needed what by when.  See, I do really well with providing the what by the when and others rely on it.

Work has been intense for a few months as we approached the launch day for a project that was in development for two years.  It was a huge effort and my team and I put our hearts into it.  It's not perfect.  We see the gaps.  We've already started work to fill in those gaps and deliver the next phase of the effort.  However, it is GOOD and solid and we're proud of the work.

At home, my kids have started summer break.  Each year seems harder than the last but for different reasons.  The homework battle never ends and both now have summer academic work on their plates.  They will need a bit of prompting and tonight's attempt ended in an emotional conversation with my youngest about what lead to our adoption.  We've been warned that these conversations will happen and will be repeated as the child achieves different milestones.   Despite the warning, these conversations can leave you gasping internally.  I remember revisiting old hurts repeatedly as a child.  Each time I considered why my father abandoned us, I was surprised at how raw it felt for me despite my previous examinations of the topic.  The same is proving true for my kiddo.  While I'm playing a different role in these conversations, they are no less of an emotional minefield for either of us.

So, this is my post.  This is my "I need to change the laundry but don't really give a damn," my "sitting on the couch existing to the rhythm of the dogs' snores is enough right now" post.

My little one has gone to bed and I can stop being the adult.   I will grieve for my child's confusion and pain over other people's actions and decisions.  I'll switch out the laundry but it's not getting folded tonight.  Tomorrow, I'll put on my adult face for work and do what needs to be done there.  Tonight, I'm going to make a drink and veg.  I'll return to the blog in a few days.

Until then, know that Lyn is safe and happy.