On Thursday, Lyn was evaluated by a team associated with the University of New Mexico's Transdisciplinary Evaluation and Support Clinic (TEASC).  It was a very interesting experience and one in which Lyn was fully engaged.

When we arrived, Lyn went through in-take just like any patient visiting a physician.  Her vitals were checked.  Her blood pressure was in the normal range with a reading of 100/80.  Her weight indicated she had lost 10 pounds of weight since her last weight check about 6 weeks prior.  Mom indicated that the weight loss is mostly attributed to small changes such as limiting Lyn to one soda a day and not having dessert every day.  The weight loss was widely praised and Lyn was beaming as a result of all the positive attention.

In addition to Lyn, two of her team overseeing her participation in the DD Waiver program, Mom and I attended.  We were escorted up to a large conference room where the evaluation organizer asked Lyn if she was comfortable inviting medical students in to observe the evaluation.  Lyn gave her permission.  She was very clear in her statement that she was comfortable with them participating.  A few minutes later, a large group of staff and students joined us.  The group consisted of the program director, a physician's assistant, a psychologist, a neurologist and a dental hygienist.  Accompanying them were five students which included students of nursing, pharmacy, dental hygiene and two medical students.

The program director initiated the conversation by asking everyone in the room to introduce themselves.  We went around the table.  When Lyn introduced herself, she stated her full name followed by "... and I'm the center of attention!"  She was thrilled to be the center of attention for such a large group.

After introductions, the program director started with Lyn's case manager and asked her to talk about Lyn's strengths.  She described Lyn as having a good sense of humor, social and active with bowling or out in the community.  The next member of Lyn's team described her as thoughtful, giving and creative.  When it came to Mom, she described Lyn as helpful and willing to offer advice.  At this point, the evaluation evolved into a conversation in which multiple examples of Lyn's memory challenges were highlighted.

Lyn's sundowning was discussed as was the more recent changes we've documented here for the past year such as the loss of ability to change the preset car radio station, to turn on the washing machine or, most recently, to open her bowling bag to locate her ball.  During these examples, Lyn demonstrated crabbiness, non-sequitors and adamant story telling.  She was engaged and trying very hard to participate and offer her own examples.  At one point, Lyn stated "For a lot of years, I've been doing what I want to do." This was said in context of her decision to quit working for Wendy's.

A classic example of Lyn was up for consideration when she stated that "A month back, Mom got me a bike..."  That month back happened three years ago and Lyn hasn't ridden the bike in two years.  I had to smile at this because this lack time tracking has always been there with Lyn and it never fails to evoke this response in me.

At one point, the psychologist decided to explore the possibility of Lyn being depressed.  We stated that Lyn is not depressed and is a happy person, waking up motivated for the day.  The psychologist asked Lyn directed if she "...ever gets sad...".  Lyn stunned us all by saying "I don't want to talk about it!" and bursting into tears.  Lyn took a couple of minutes to compose herself and then kept her head down on her arms for a couple more minutes.  Lyn is not depressed.  She is, however, very susceptible to suggestions and had an audience.

The evaluation continued for a total of two hours.  Towards the end, it was asked if Lyn was on any medication for the memory problems she is exhibiting.  We confirmed that she was not.  Lyn has expressed a desire to not have the medication and Mom doesn't see the point to putting her on something that is not going to help.  It was asked if Lyn is on Vitamin D supplements and noted that D3 is available in liquid though it is hard to find.

It was also asked if any genetic testing had been done to determine if Lyn actually has a genetic condition causing her intellectual disability.  This question is an interesting one.   At one point, it was theorized that Lyn might have Fragile X Syndrome.  Genetic testing has never been done on Lyn because of cost and because we've actively worked to make sure she never got pregnant.  The team pointed out that if there is a genetic basis to Lyn's current state, that it may be predictive of what her progression will take over the coming years.

I had intended to ask a couple of questions of the TEASC team while there and the questions fled from mind during the evaluation.  I would have liked to ask:

  • Should Lyn's neuro-psych evaluation have been conducted using tests geared for the intellectually disabled instead of a normative population?  
  • If there is early on-set Alzheimer's, would anything significant be visible in the MRI of her brain?  (The MRI done a year ago shows nothing of note.)  
  • Would there be value in repeating either of these tests to see what changes are notable in the year since they were last done?

I have asked Mom to forward these questions to her TEASC team contact.

The term "atypical" was stated several times, particularly by the psychologist who indicated that Lyn's sundowning symptoms are atypical.  Lyn gets agitated outside the home in the evening; but not when she's in her own environment.  Apparently, this is atypical.  We found this surprising because this is also how Grandma behaved when her Alzheimer's began in her late 70's/early 80's.

After two hours, the evaluation ended.  The TEASC team will evaluate Lyn's file and their notes from Thursday's evaluation.  They will report their findings and suggestions.  This report will be shared with us in a few weeks time.  I will update you all when I have the report sent to me.   I am very interested in reading the team's report and appreciate the time they gave us.


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