Friday, September 30, 2011

Sometimes the Attitude Brings on the Sugar

Sometimes, Lyn's attitude gets away with her.  As with all of us, she has her crabby moments.  She may talk back to Mom reminding her to do her chores like make her bed or take out the trash.  She may snap "I know how to brush my teeth!" if Mom reminds her to brush them before bed.   If she goes to be crabby, there's a darn good chance that she'll wake up crabby.  Normal stuff.

On Monday, Mom had to wake Lyn so she'd have enough time to get dressed and eat something before her speech therapist arrives for their weekly session.  The therapist has asked that Lyn eat breakfast before the session because Lyn's more focused then.  Normally, Lyn hates eating breakfast. 

Well, the night before, Lyn went to bed crabby. She snapped at Mom about both the trash and the teeth.  In the morning, Lyn was such a ball of sunshine and happiness that she snapped at Mom about eating breakfast and her teeth again.  Mom had enough and told her to not use that tone of voice.  Lyn burst into tears.  She had enough time to settle down, eat and apologize before therapy began.

When the therapist arrived, Lyn decided to be sugar sweet.  The therapy session lasted an hour but by noon, Lyn was being so solicitous and sickingly sweet that Mom was sick of that too.  We usually make jokes about her sending us into a diabetic coma with her sweetness.

I can honestly say that this is not a new development.  She's always doled out the sugary sweet behavior whenever she's been reprimanded for being crabby.  It used to drive me nuts when we were teens.  She would do everything she could to make me angry while I was doing homework.  It was deliberate and calculated.  The moment she heard Mom's car pulling into the driveway, the sugar would start oozing.  I chuckle about it now because I remember so many times when she'd say "I was good today, right?  I didn't interrupt your homework."  At the time, I think my jaws were pretty firmly clenched and a twitch bothered my eye. 

Now, if only I could remind myself to chuckle when my younger child pulls the same devil/angel switcheroo.

Thursday, September 29, 2011

Can We Say "Stupid"?

Mom suggested the title for today's post.  I think it summarizes her feelings about the appointment with the neurologist pretty succinctly.  I'll let Mom tell of today's appointments.

"Lyn had the EEG and did well.  The tech said she normally doesn't allow family to be in the room.  I said I understood but I have to be back there.  I'll sit in a corner quietly and then Lyn will be cooperative  and calm.  It worked.  The EEG took about 30 minutes.  Lyn looked confused when the tech  gave instructions because they were more than 2 steps long.  Finally, she was able to do what was asked after being instructed 4 times.  I kept my mouth shut.

We then had about 40 minute wait until appointment with the doctor.  We ran an errand and came back.  When he called us in, Lyn gave me a look that said "Do we really have to do this?"  He didn't see that, fortunately.  He said the EEG was "perfectly normal."  No seizure activity.  He still thinks that Lyn's symptoms of memory and skill loss are stress related anxiety, behavioral issues and just moodiness.  I asked about her forgetting how to use the washing machine.  He said maybe someone other than me should teach her.  OK, but why and how could she have forgotten that after washing her own clothes for  20+ yrs.  He didn't know.  The stress, anxiety and moodiness are traits we see in people with brain injury.  Ok, I know that.  But she doesn't fall into the 'brain injury' dept.  Being born with brain injury is the same thing?  No answer from the doctor.

The labs he did came back normal.  He said 3 times that after the neuro-phyc testing is completed we should see a psychiatrist and get Lyn on a low dose of anti-depressant.  That is NOT going to happen because I really don't believe that's the route we need to go."

Neither Mom nor Lyn want to see this doctor again.  He is not listening or taking her symptoms or skill changes seriously because he believes she's too young to have dementia.

Wednesday, September 28, 2011

Have We Not Progressed?

I came across this article, Differential Diagnosis of Dementia, from 1986.   In reading through it, it struck me that the diagnostic steps reads as if the article was written more recently.  In the 25 years since this article has written, it seems that we have not progressed much.  As we've found over the past several months, dementia, especially an early diagnosis such as Lyn's is still a differential diagnosis.

Tuesday, September 27, 2011

This Week's Appointments

Lyn's got two appointments scheduled this week.  She has a repeat EEG to see if there is some deep seated epileptic seizures happening in her brain which are not evident externally.  The neurologist ordered this EEG because he doesn't believe her seizures ever stopped.  Personally, we find this theory hard to believe because we've not seen anything in over 25 years.

Her other appointment is a followup with the neurologist himself.  This will happen after the EEG and he should be giving them his assessment of what he believes is going on with her.  After he meets with them, he will provide a write up of his diagnosis to her primary care physician.

Mom will let us know what comes out of these appointments.

Monday, September 26, 2011

Hands Off, Buddy!

First, the scores.

Now, the story.

The guy who paid for the athletes' bowling came down to where Lyn was sitting.  Without announcing himself or greeting her in any way, he came up behind her and put both arms around her.  He frightened her.  Lyn's respite provider was right there and loudly said "Hey!  Hey!  Hey!  What the hell are you doing?"  He let go and Lyn rushed over to her provider.  He said he just wanted to wish her luck and was told to tell her by keeping his hands to himself in reply.  

Later, he came up & told the coaches he now would like to take everyone to the movies.  Both Mom and Lyn's respite provider have alarm bells going off now because of his actions.  He has spoken to Lyn once before.  However, that doesn't give him the right to touch her, especially without her permission.  

When Lyn got home that afternoon, she had to be repeatedly assured that she did nothing wrong.  She didn't like him hugging her or coming up on her from behind.  Mom coached her on yelling "No!" really loud if he touches her again but suspects Lyn will just freeze again.  Mom reiterated that no one has the right to hug someone when it is not wanted.

Fortunately, Lyn's never out in public unattended.  Her respite provider is very protective of her.  She alerted the team coaches to the man's actions towards Lyn but they didn't react.  Unfortunately, there are some coaches and care providers who believe that as long as they can see what is going on, then everything is OK.  They would not have intervened the way Lyn's provider did this week.  

Some would argue that it is a tough decision.  Lyn's legally an adult and can choose to hug someone if she wants.  We agree to a certain extent.  In this situation, Lyn didn't make a choice.  It was forced upon her unexpectedly.  I don't care if you're intellectually disabled or not, that's not acceptable.

And to Lyn's respite provider, Thank you!  I appreciate knowing you're looking out for her.

Sunday, September 25, 2011

Her Team Agrees

On Wednesday of this week, Lyn's team had their monthly status meeting.  Her team is always present and these meetings happen in Mom and Lyn's home.

In this month's meeting, they reviewed the recent changes that have been documented by Mom, Lyn's respite provider and her speech therapist.  They reviewed the interactions with the neurologist and the clinician who is performing the neuro-psych testing.  They agree that the neurologist did not listen and they fear that he has made up his mind about Lyn's case.  They feel my thoughts about him possibly reading the notes in more depth after their meeting are overly optimistic.

The team is in agreement that Lyn should see the neurologist again at the end of this month for a follow up EEG.  At this point, they're hoping to consider the current set of tests as a baseline.  However, they're not sure that his assessment is going to seriously consider the changes they are all observing and documenting. They are also hoping to factor the results of the neuro-psych as part of Lyn's new baseline.  They will then use all the test results to gauge future changes and test results against.

In the meantime, there is apparently a new group of physicians and clinicians associated with the University which has an interest or focus on dementia in the intellectually disabled.  Lyn's team is going to see if they can get Mom and Lyn in touch with this group.

Saturday, September 24, 2011

The Casino Man

Sometimes, my sister and her respite care provider take a trip out to one of the casinos to spend a few hours there.  Lyn enjoys playing the slots and considers any win a good win.  It doesn't matter if she wins $0.05 or $2.00.  She's got the lingo down pat.  She can tell you about "cashing out" as well having to get all three images to match on the slot machine.  Lyn's respite provider is back.  So, off they went to the casino for an afternoon.

While playing, she said a man she knew came over to say "Hi."  She said it was a long time since she saw him.  Mom asked who it was and she looked puzzled.   She didn't remember his name.  Mom asked who recognized who.  She was "feeding her machine" when he came over.  He asked how Mom was and to tell Mom he said "Hi."  Lyn still couldn't remember his name.  Mom dropped the topic to keep her from getting upset.

A couple of hours later, Lyn said "Remember the man who used to be at Church where Grandma went?"  Mom put two and two together at that point.  A man at a casino who also went to Grandma's church could only have been the former priest, Father T.  Father T enjoys a good game of poker and was known to take his mother to Vegas each year.  "Yes, that's who it was" she said and was excited.  

Lyn has known Father T for over 20 years.  She knew his name two weeks ago when she asked Mom a question about him.  She's now beginning to struggle with names.

About all this, Mom says, "I can't say if she's really failing this fast or if I'm being overly cautious."  I figure we'll just document it now to see if there is a pattern.

Friday, September 23, 2011

What time is it?

When Lyn and I were in high school, I dated a guy in my senior year who passed the Lyn litmus test.  He was always very polite to her.  One day, he really showed his patience with her.

Lyn came up to my then boyfriend and asked him if he could help her tell the time.  Using the clock in the kitchen he spent over a half hour trying to explain how to tell time using the long and short hands on the clock.  He would go over one step and ask if she understood.  She would repeat what he said and nod.  When he asked her to put it all together to tell him the time, she would stumble over the minutes, getting the time wrong.  He would start over, clearly feeling like he was making progress and she was just moments away from really getting how to tell time from the analog clock in the kitchen.

Mom and I stood and watched and waited.  She tried again to tell the time and he again went over it with her.  An hour was rapidly coming to a close and there was only so much stifling of our laughter that we could do.

Mom finally called out "Lyn, what time is it?"  Lyn looked to the digital watch at her wrist and rattled off the correct time.  My boyfriend just hung his head in defeat.  She had played him and successfully monopolized his time.

She may be challenged, but the girl is not stupid.

Thursday, September 22, 2011

One Doctor's Opinion

Lyn is a participant in New Mexico's DD Waiver program for the intellectually disabled.  The program places many requirements upon the care providers beyond training and certification.  There are many procedures they are required to follow.  For example, they are required to keep all medication in a lock box.  They have to keep daily logs of the participant's activities.  They even have to follow a specific procedure to administer medication and document if the medication was taken or refused.  The care providers actually have to go through more procedural steps and documentation than that required of foster parents.  (I'm a foster parent who can safely make that comparison.)

Any time a participant visits a doctor, the State's policy requires that a particular form is completed and signed by the attending physician.  Mom forgot this form when she took Lyn to the neurologist earlier this month.  So, the next day, she ran it by his office along with a self-addressed stamped envelope.  He completed the form, signed and mailed it back to Mom.  The report has now been included in the monthly log which will be turned into the State.

The form essentially asks why the physician saw the Waiver participant, what was the diagnosis and course of treatment.  On the form, the doctor states the reason for the visit was memory loss.  For his diagnosis, he lists

  • Static Encephalopathy with mild-moderate mental retardation
  • History seizure as teen
  • Mood d.o. with anxiety  (?)
  • Dementia vs Pseudodementia

Please note that the question mark is his.  This is an interesting development because it seems to be a bit of a change from their first visit.  On that day, the doctor listed the following medical codes on Lyn's exit sheet.
  • 300.4
  • 348.30 
  • V77.99
Mom has worked for doctors' and psychologists' offices for over 20 years.  She has handled their billing and insurance issues.  As a result, she's familiar with the codes used when filing insurance claims and looked these up.

They are:
  • 300.4 - Dysthymic Disorder (depression)
  • 348.30 - Encephalopathy - includes deginerative diseases of the brain
  • V77.99 - other & unspecified indocrine, nutritional, metabolic & immunity disorders
When the doctor met with my sister, he made it clear that he didn't believe she has dementia because of her age.  He also suggested that she needed psychiatric help for anxiety.  When they left the office that day, he had not read through any of the notes Mom provided him and, based on what he wrote on her exit sheet, it appeared that he had just decided she was anxious and depressed.

Now, this new form seems to indicate, to me at least, that while he's not 100% convinced that she's got dementia, he may be a little more open to the possibility.  His question mark next to the "Mood disorder with anxiety" is part of what is leading me to think he's not as convinced that she's depressed as he was at that first meeting.  The last bullet, Dementia vs. Pseudodementia (symptoms of dementia brought on by depression), also seems like he's now considering the possibility that she's not depressed.

This is just my reading of his notes.  I, of course, may be wrong.

Wednesday, September 21, 2011

Bead Work

Another craft Lyn enjoyed was working with plastic beads to make different designs.  She would use a plastic frame to hold the little beads in place as she put each one where she wanted it. 

Here is an example of her work.  I keep this one on my office desk. 

Those beads are small.  They're only about 5 cm in diameter and about 5 cm in height.  If you bump the plastic frame, they go everywhere. 

Once you have a pattern or shape the way you want it, you then grab the iron to heat the beads enough to melt into each other.  (Mom would do this step for her.)  The heat from the iron is what causes the shape to stay together.  If you don't melt them properly, they don't stick and the project breaks.

Lyn had made a number of these bead shapes.  My youngest child has a frog she made from these beads.  I don't think she's made one in over a year.  The beads are too small for her to work with comfortably and her patience is no longer sufficient for the task either.  Maybe she just lost interest in this as a hobby.  I'm not entirely sure. 

This change is a mixed one for us.  While we don't like to see her give up a hobby she once enjoyed, Mom doesn't mind the beads no longer being found everywhere.

Tuesday, September 20, 2011

An Unexpected Kindness

Mom took Lyn to bowling last week because her respite provider was on vacation.  When they arrived at the bowling alley, the athletes were told to keep their money.  Someone made a donation to cover the cost of the games for all the athletes for two weeks.  The gift was made the previous week which allowed the coach to have a thank you card for all the athletes to sign.

Mom asked if the donation was anonymous or could the donor be made known.  The coach said "See the bald man with the little boy in the red shirt?  He did it."  Mom recognized the gentleman because he and his son are frequently there when the athletes have their practice.  

When the card was signed, Mom asked if she could take it to him because she wanted to thank him, one parent to another.  She and the gentleman had a great conversation.  She not only conveyed thanks for the unexpected donation, but also conveyed her gratitude for his kindness because too often people choose not to see the athletes or make fun of them.  It turned out that his sister has Downs syndrome.  He had watched the athletes bowl for several months and wanted to do something for them.  

He recently approached the coach to ask if he could pay for the team's bowling.  She quickly accepted and let him know that the team has 24 athletes and the games cost each one $4 each week.  The cost didn't sway him and before he left that day, he had pre-paid enough games to cover the team for two weeks.

Only two games were played this week.  Lyn's scores were 98 and 129.

Monday, September 19, 2011

A Church Meeting

Mom is very active in her church.  She frequently attends week day morning Mass in addition to Sunday Mass.  She's a lay minister, a teacher and a wedding coordinator for her congregation as well.  As a result, she occasionally has to attend evening meetings in connection with her duties.  Normally, she would arrange for Lyn to be out with her respite provider when an evening meeting was scheduled.  This past week, she was unable to secure the respite provider's time so Lyn accompanied her.

When they were at Church for the meeting, Lyn was subtle but clearly expressed her discomfort with the situation and her desire to leave.  There were about 10 participants and Lyn knew everyone in the room.

They started at 6 PM and by 7:15 it was dark outside.  She had put her jacket on the back of Mom's chair.  She said she was cold and put her jacket on.  She was hugging herself and had a worried look on her face.  She sat quietly and listened, laughing when the participants laughed.  She wouldn't look at Mom but her knee began "bumping" against Mom's knee.  When this started, Mom leaned over and told her they would soon be done.  Mom assured Lyn that she was doing ok.  She nodded.  She didn't act out, didn't speak out, didn't misbehave but she was uncomfortable.  We didn't finish until 8:15 and she was really nervous by that point.

On the way out of Church, she asked multiple times what the time was.  As soon as they got home, she got ready for bed.  She was asleep by 9 PM.  When Mom left for Mass  in the morning and she was still snoring.

At Church, the priest asked if Lyn was OK.  He said she looked very tired.  Mom explained how as the evening progressed she became more and more uncomfortable even tho she knew where she was and who was with her.

I'm honestly surprised she didn't burst into tears.  

Sunday, September 18, 2011

Fair Time

It is the time of year for fairs.  State fairs, county fairs, and even some town fairs can be found for a day's enjoyment.  Every year, Lyn enjoys going to the New Mexico State Fair.  At the end of the week, she and Mom spent most of the day there.

Normally, they would drive to a designated Park and Ride location to take the bus into the fairgrounds.  That option was discontinued this year.  So, Mom paid for parking on the fairgrounds itself.  Lyn was not happy about this.  She likes taking the bus to the fair.  She had fixated on riding the bus the night before and had to have the reasons for not taking the bus explained multiple times.

Once at the fair, they wandered around and looked at lots of the exhibits.  Because they went early in a week day, they didn't have to contend with large crowds.  They did avoid one environmental building because of the bus loads of elementary school children that packed the place.

Mom told Lyn, "Now's your chance.  If there's any kind of junk food that you want, have at it."  When they got hungry, Lyn spotted the Ashbury Cafe and declared that she wanted a piece of pie.  She had chocolate chip and Mom had apple.  When they hit the Native American Village, Lyn wanted fry bread. So, Lyn's lunch consisted of pie and fry bread.  Not too bad, if you ask me.

Overall, they had a pretty good day.

Saturday, September 17, 2011

A Grandma's Response

I thought I'd share with you the note Mom sent my oldest child in response to my post about Grief and Children:

Sweet, compassionate, understanding, funny, caring, intelligent, loving, kind hearted.  What are all these words about?  You.  Why do I say this?  First of all, because it's true and I love you.

I know you are sad about the changes happening to Aunt Lyn's brain and I am too.  A long time ago I was mad, very mad, at God.  It isn't fair that she's mentally challenged.  It isn't fair that I had to deal with her being different from her siblings.  But after a while I wasn't mad at Him any more because I began to realize how much she offered.  God has a plan for each one of us  We don't always know what the plan might be but it's there.  I believe His plan for Aunt Lyn was for her to teach me many lessons.  Yes, she has taught lessons.

She taught me to be patient.  She taught me to look at nature's beauty.  She really couldn't talk till she was about 5 yrs old.  But each evening she would come get me and make me step outside or go to her bedroom window.  She would be so excited and say "mama mama mama" and point to the horizon.  She wanted me to see the beautiful sunset and all it's colors  She still points it out most nights and tells me "God did that."  Unfortunately we get busy and don't stop and appreciate the beauty around us.

She taught me how to see life as it is and not make it complicated.  The day our home burned, as we pulled away from the rubble, she patted me on the shoulder and said "at least you don't have to clean house tomorrow."  I realized she was 100% right, my children were safe.  Nothing else mattered

She taught me to see people for what they are.  To see their heart.  She doesn't have the prejudices most adults have.

I want you to know how much joy and love you have given her and because of that given me.  From the time you were a baby she was so excited to have you in the family.  She loved playing with you when we came for your 1st birthday.  Each year, when we come to visit she loves seeing how you had grown.  When you came to visit, especially this year, you made her laugh and helped her play on the computer. You were silly and entertained her so much.  She still is telling people about your visit.  She loves you very much, as I do.  Do you know what she thought was the funniest?  When you came down the hall into the living room crawling like a spider.  She was laughing till tears ran down her cheeks.  Thank you

While it's somewhat frightening seeing her change I don't want you to dwell on it.  She's safe, happy and busy with her activities.  I'll do everything I can to keep her that way.  God will give me the strength I need.  What I want you to do is just be you.  I know you love your Aunt Lyn and she loves you.  She doesn't want you sad.  Focus on school.  Focus on Lego League.  Focus on being a 10 year old kid

I love you so much and that loves grows all the time.  Thank you for your love and concern for Aunt Lyn.  Please remember, your parents and I will always be here for you to talk to about this or anything else

I love you, thank you and want you to know how I appreciate you.


Friday, September 16, 2011


For several years, Lyn has been stitching floss onto plastic canvases.  I believe she was introduced to this craft by an occupational therapist she had worked with for a while.  Lyn doesn't follow any patterns.  She just adds a color that strikes her fancy when she's used up a thread.

Here are some of the many coasters she's made me over the years.

Lyn has never been able to start or end a thread, with or without a knot.  Mom has always been asked to do it for her.  Lyn could, however, thread the needle.  If you're not familiar with the needles used in this craft, they're much larger than a regular sewing needle and half of the needle's length is taken up by the opening for the thread of your choice.  Lyn uses two or three strands of floss.  The needles are large enough that you could easily use yarn.

Lyn has made countless coasters and several sets of placemats.  I once gave her a sphere form, but I don't think she's ever touched it.  She prefers the coaster circles and the large retangles for placemats.  She's working on a new set of four placemats for someone.  I'm not sure who will be the recipient.  Chances are good that she's not decided on that yet either.  It is not unusual for her to have several items in reserve that she can whip out and give to someone on a moment's notice.

Mom reports that Lyn is now unable to get the thread into the eye of the needle.  This is a new change of a skill she's been using weekly, frequently daily, for as long as she's been doing this craft.  More often than not now, she looks to Mom with pleading in her eyes but refuses to ask for help.  If Mom asks if she needs help, Lyn quickly passes her the thread and needle.  Earlier this week, she stated "The thread is too fat."  She's definitely trying to cover up her challenges.

Oh... Don't tell Lyn, but these babies can fly!  She'd be mad if she saw us playing with them.

Thursday, September 15, 2011

Grief and Children

When Lyn was diagnosed with dementia, my husband and I made a point of telling our children before Lyn arrived with my Mom for their annual start of summer visit.  We explained that Aunt Lyn's brain was changing and that she may say or do things a little differently than she did before.  We asked that the children continue to treat Aunt Lyn with love and respect during our visits and our weekly conversations via Skype.

We spent a little time role playing appropriate responses to Aunt Lyn with our eldest because our eldest can be a bit pedantic from time to time.  (The child comes by it honestly.)  In previous visits, this child would challenge statements Aunt Lyn made and do much to prove knowledge on the point being discussed.  This child is not good at tolerating inaccurate facts.  We literally practiced how to respond to Aunt Lyn if she made a statement like "Snakes have legs."  Our practiced response would be "That's very interesting, Aunt Lyn.  I didn't know that."  The child contended that "Snakes don't have legs" and so I called on my good friend Google to help me prove the child is not right about everything.  This child would have previously argued the point until rosy cheeks turned blue.

This child is old enough to understand the permanency of death, that changes in Aunt Lyn's brain are permanent and not something we may be able to slow down.  This child has lived through the deaths of numerous fish and a cat before this understanding took hold.  Since then, this child has matured enough to really get it and has grieved the deaths of two of our dogs.  Aunt Lyn is the first person in this child's realm of caring to be faced with obvious mortality.

After their visit to our home, there was a number of weeks before we visited them.  When we visited, the changes in Aunt Lyn were more pronounced than before.  My oldest child, remained behind for an extended visit with Grandma and Aunt Lyn as has been done for the past several years when the rest of us returned home.  In previous years, this extended visit would sometimes be a challenge as my child and Aunt Lyn competed for Grandma's attention or to prove who was right.  That did not occur this year.

This year, knowing that Aunt Lyn's brain is changing, my child made me proud.  This child decided to spend the extra time entertaining Aunt Lyn, making it a personal goal to see if Aunt Lyn's laughter could bring her to tears.  There was no pedantic need to be right.  There was play and silliness.  There were hugs and sharing.

Since my child's return from Aunt Lyn's, there's been a creeping sadness that my child has been struggling to identify.  This week, while my child and I had some one-on-one time, I was finally able to ferret out the cause.  My child is worried and grieving for my sister.

My child doesn't understand why Aunt Lyn's brain is changing.  My child doesn't think it is fair that this is happening to her and declared that "She's such a nice person that she doesn't deserve this."  My child doesn't want Aunt Lyn to become more disabled in any way and definitely doesn't want her to die "for a very long time."  I shared with my child that I agree with all these feelings and that it is very upsetting to know that these changes are happening to Aunt Lyn.  I assured my child that these feelings are all normal given the situation.  We cried together.  My child cried for Aunt Lyn.  I cried for both of them.

Ultimately, I think my child was reassured to know that Aunt Lyn will continue to be well cared for by Grandma, that we'll keep tabs on the situation and do what we can to help, and, most of all, that Aunt Lyn will be treated with love and respect.  I can't take my child from one point in the grief cycle to the end of it.  Unfortunately, my child is going to have to independently grieve for Aunt Lyn.  However, I can be there to answer questions and give as many hugs as are needed because we'll all need them at some point, at many points in this journey.

Myself included.

Wednesday, September 14, 2011

Testing has Begun

Mom and Lyn met with a clinician who can do the neuro-psych testing.  She happened to have a cancellation and let them have the open time slot.  They had an introductory meeting and began by having Lyn answer an hour's worth of questions.  Mom was out of the room.  When they called her back in, they covered Lyn's very early history including her pregnancy, labor and delivery.

One of the interesting things that came out of this conversation was that Lyn was first put on antibiotics when she was about 2 hours old as a preventative measure.  Lyn was premature.  Labor and delivery was short but intense.  Contractions were extremely long and never really let up.  Once she was delivered, they started on the antibiotics and continued them every 4 hours for at least the first 24 hours.  The clinician stated that antibiotic use on such a premature brain could result in damage.  Mom always felt the damage was a result of the preterm delivery and intense labor.  It is an interesting theory if nothing else.

Lyn will visit with the clinician three more times.  They will play games on the computer, play with blocks and ask Lyn questions to which they will write the answers she gives.  Each of the sessions will last for two to three hours a piece.

Lyn is thrilled.  Can't you tell?

Tuesday, September 13, 2011


Pat Summitt, head coach for the Tennessee women's basketball team, has recently announced that she has Alzheimer's disease.  During her diagnosis process, she was given a neuro-psych exam.  Part of the exam consisted of math questions, counting backwards, and even a question about the date.  Coach Summitt struggled with those questions.  Apparently, she always struggled with numbers and she's not intellectually disabled like Lyn.

The Mini-Mental State Examination (MMSE) is given to the general populace during an evaluation for a potential dementia diagnosis.  The MMSE is quick to administer and allows a clinician to evaluate the severity of a person's cognitive impairment.   I suspect this is one of the tests given to Coach Summitt.

Recognizing that testing of Lyn may be a challenge because of her intellectual disability, we would be best served to not benchmark Lyn against measures used for the general populace, but to benchmark her skills against herself.  To this end,  Lyn should be evaluated with the Dementia Questionnaire for Mentally Retarded Persons (DMR), the Dementia Scale for Down Syndrome (DSDS), Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) and the Assessments for Adults with Developmental Disabilities (AADS) (PDF Link) test.  Additionally, there is the Protocol for Recording Baseline Behavior Information for Persons with Down Syndrome.

We need to have Lyn's current personal best on her skills documented to compare against her skills in the coming months.

Additional Information Sources:
Aging and Intellectual Disabilities: Confronting Issues in Measuring Dementia in Persons with Intellectual Disabilities
Alzheimer Disease in Down Syndrome
Instruments for the Assessment of Dementia Among People with Intellectual Disabilities

Monday, September 12, 2011

Bowling #4

This past week's bowling scores are 79, 118 & 116.  She had a good time.

I've decided to start graphing her scores as well.  This will let us see the overall trends of her bowling.  I hope this helps.

Here is the graph showing the three game bowling that she's been doing the past three weeks.

Sunday, September 11, 2011

Thank you, Joe!

As the country collectively remembers the events that happened a decade ago today, I thought I'd take a moment to remember events that happened about 27 years ago and impacted Lyn's life directly.

First, let me tell you about Joe.  Joe was our neighbor who lived across the street with his wife.  They were retired.  He had been a police officer in New York, if I remember correctly.  They were a quiet and very nice couple.  The neighborhood kids all knew that at Halloween you wouldn't get candy from knocking at Joe's door.  He gave out small toys instead.  I remember one year that we all got these great, bouncy rubber balls.  They were bigger than super balls and they lasted a really long time.  Anyway...

In October, 1984, our house burnt down.  Lyn was the only one home.  Lyn's school released early that day and Lyn was to be home about an hour before the rest of us were scheduled to get home from school.  Lyn got home, called Mom to report in, fixed herself a snack and then decided to make more tea because we were out and she wanted to be helpful.  She'd watched Mom do it many times each week our whole lives and felt she knew what to do. 

When the water was boiling, she tossed in the tea bags.  She forgot to turn off the stove at that point and the tags on the tea bags caught fire.  This scared her.  She grabbed the tea bags from the pot and tossed them into the trash and closed the trash cabinet's door.  She turned off the stove and went into our room to change her clothes.

Meanwhile, our neighbor Joe was across the street with his wife.  He described having a bad feeling and knowing that Lyn was to be home on her own for a little bit.  He decided to just walk across to check on her.  By the time Joe got to our yard, smoke was curling from around the door and windows. 

Joe snatched the garden hose, turned on the water and went in.  He found Lyn standing in the living room, half dressed, clutching her blanket to her face.  She was frozen in fear and the house was aflame around her.  Joe grabbed her and pulled her out.  He ran her over to another neighbor's house where they called 911 and checked Lyn for injuries.

Lyn was fine.  The house was a total loss and the cat died in the fire. 

Lyn is alive today because our neighbor, Joe, just had a bad feeling and listened to it.  He never wanted acclaim for what he did.  He just responded to a situation in front of him. 

I doubt that Joe is alive today.  He was retired when the fire happened.  However, Joe gave a gift to our family that we could never repay and I can't imagine growing up without Lyn in my life.

Thank you, Joe!

Saturday, September 10, 2011

D and R together do not spell "God"

All my life, I've heard Mom say that "D" and "R" do not spell "God."  It is her short-hand way of saying that sometimes, some doctors do not listen to the patient, the patient's car provider or the presentation of the symptoms.  We saw this yesterday.  Part of what made yesterday disappointing is that the doctor made up his mind about Lyn before he walked in the room.  Yesterday was not the first time this has occurred and it won't be the last.

We'll let Mom tell the story of the first time this happened to Lyn.  Before we do, let me interject that Lyn has a great care provider in the nurse practioner they visit normally.  Growing up, the pediatrician we had was also a wonderful doctor who really listened.  Lyn's current dentist and his hygienist are also wonderful.  So, when the exceptions happen, they really stand out.

Here's what Mom wrote to me overnight:

     I remember once when she was about 7 months old and sick that I took her to the clinic.  Dr D., her
     regular doctor, was on leave but some other Colonel was filling in.  He came into the room where I had
     her down to her diaper.  He looked at her chart and asked what was the problem now.  I started telling
     him of her fever and chest congestion when he stopped me and said "I think the only thing wrong with this
     child is that you need a psychiatrist." 
     I picked her up and started dressing her and said "I may need a psych but that's not what's wrong with
     her.  I do everything for her the same way I have done it for my son who is 14 mon older and never sick. 
    You'll not touch her."  I walked out.

     By the time I got home your father was calling and asked "Now, what did you do?"  That Colonel had
     called your father's 1st Sargent.  He reported that I was insubordinate and he wanted your father court
     marshalled.  Yes, he could do that.  So, I told your fatherwhat happened.  He went into Top's office and
     told him what I'd said.  Fortunately, the Sargent knew Lyn's history.  He decided to not give your father
     an Article 15 but he had to do something to get the Old Man off his back.  Your father ended up having
     to pull CQ duty each weekend for the next 6 wks.  

     He wasn't too upset, other than he'd miss 2 of his flight lessons.  He was more happy to deal with the
     guys than with the wife & kids.

Friday, September 9, 2011

Uh... Seriously?

Lyn and Mom met with the neurologist today.  I wish I had been there.  Then again, maybe it was a good thing I wasn't.

To sum up, Mom said, "Well, at least the doctor was nice."  So, I asked her to start at the beginning.  Here's what she told me:

The MRI was normal.  There is no sign of Alzheimer's Disease.  The EEG was also normal.

The neurologist doesn't believe in dementia at her age and thinks her memory loss is due to the stress and anxiety of her life.  He wants to put her on anti-anxiety medication to prevent more memory loss from the anxiety and stress.  Mom pointed out that Lyn's life is structured to minimize any anxiety and that she has no stress, no job, no significant responsibilities to stress her out.

He did not agree with the diagnosis of Sundowner's and said "that's not Sundowner's" with regards to her anxiety in the evenings.  When asked what Sundowner's was, he never responded.

Mom had printed off the Dementia Symptoms post and highlighted the portion where I list Lyn's symptoms.  She also handed him a list of the changes she's been documenting since April.  He didn't read these.  He just dropped them into the file.

He believes that the incident on the Metro was "just behavioral."  He recommends that Lyn and Mom meet with a psychiatrist to address her behavioral problems.  To this we ask "What behavioral problems?"  Even my husband asked that question when I summarized this for him.

The neurologist wants another EEG and more blood work.  The EEG is because he believes Lyn's having deep seated seizures.  His logic is that if she had them for two years, she's still having them despite NO evidence of that in over 20 years.  He also wants a neuro-psych evaluation to be done.  Mom's going to find out who has done the neuro-psych evaluations for the other intellectually disabled clients of Lyn's speech therapist.  Mom's also going to see if any of the families of Lyn's friends and fellow athletes can recommend a neurologist who has experience with the intellectually disabled.

Mom doesn't believe this neurologist has experience with the intellectually disabled because he and his staff all looked confused any time Mom said "our population."  In an additional exchange which leads Mom to this belief, he asked Lyn if driving was becoming more difficult.  He was surprised when she said "I don't drive!  Mom does."  He asked about her apartment and living on her own.  She said "I live at home."  "Oh.  You live with your Mom and Dad?" he asked.  She bristled "No!  I live with Mom."  (Our father has been out of the picture since 1978.)  The doctor was surprised by these revelations from Lyn so Mom jumped in to remind him that they're essentially working with a 10 year old on a good day.  Mom reports that the doctor's confusion just increased.

I'm glad I read the presentation by Matthew Janicki in which he points out that diagnosis of dementia in the intellectually disabled is a challenge due to several factors including lack of understanding on the part of the physician.  I think that was the case today.  Mom says:

     I could have been mad.  I could have been discouraged.  I decided "No.  He doesn't know our

So, if you're reading this and if you know a good neurologist who is familiar with the intellectually disabled, feel free to drop a note my way.  We're on the hunt for someone who has a working understanding of our population.

Thursday, September 8, 2011

Her Favorite Bowl

Mom was going to fix Lyn lunch and asked her to get a small bowl from the cabinet.  Lyn stood there for some time looking at the cabinet full of dishes.  She said she couldn't find a small bowl.  She said she didn't see any.  Mom turned and pointed out a stack of white ones on the first shelf.  They've been using this set of dishes for 5 years.  Lyn rejected those by saying "No.  I want one of the brown ones.  They are my favorite."

The brown dishes were a set our Grandmother had bought for us when our house burnt down in 1984.  Mom had stopped using them years ago and finally got rid of them at least two years ago.

It took Mom a minute to figure out what Lyn wanted.  When she did, she reminded Lyn that the dishes had been given to a family in need.  "Oh yeah, we took them to that church."  She looked puzzled for a minute.  Mom pointed out that there were brightly colored bowls on the second shelf if Lyn didn't want a white bowl.  She said it didn't matter since her favorite ones aren't here.

Today is the appointment with the neurologist.  I hope to have a summary written for you tomorrow.

Wednesday, September 7, 2011

Research Reality Check

I found an article on Discovery News from July 2010 with a very tantalizing headline: "Bee Venom can Improve Brain Function".  While this analysis did not place the claim that a neurotoxin found in bee venom, apamin, could help improve dementia, it did link to a Science Daily article which does.  

I've read through the study referenced (pdf).  The study was designed to examine the mechanism by which apamin impacts the brain.  At no point in the study do they reference the potential use of apamin in treating dementia, depression or Muscular Dystrophy.  I have to wonder if the author of the Science Daily article made a leap or had an insight which was not adequately conveyed in the article itself because I'm not seeing the link.

Apamin is just of the things that makes up bee venom.  The use of bee venom and other bee products as a medicinal treatment is known as apitherapy.  Bee venom is used to treat arthritis, for example, and honey is used as a salve on wounds because if its antibacterial properties.  I doubt that a bee sting would result in the desired impact on the brain.  Instead, the apamin would need to be synthesized for larger or more controlled dosing.

If there is value in the claim that apamin can be used to treat dementia it will be proven out in time.  Such a claim after only a single study and without any resulting treatment just strikes me as premature.  

Tuesday, September 6, 2011

Covering for a Lack

Lyn's bowling scores last week were 173, 81 & 80.

She brought home a copy of the score sheet "since it's just easier" than to remember.  Mom said "She always seems to figure out a way around something, doesn't she?"  Lyn's been bowling forever and she's never brought her score sheet before.  I have to hand it too her that she's still using some problem solving skills.

Monday, September 5, 2011

She's forgotten but her body hasn't

I suppose the title of this post could be used again and again as the days ahead happen.  I won't use it again.  I wanted to use it today because she's forgotten what a menstrual period is and yet her body has not.   Previously, she'd forgotten that she would have them and was scared when it happened.  Now, she doesn't even know what it is or what it means.  I'm not an expert, but this seems FAST.

Mom wrote to me the following:

She just came out of the bathroom.  She's running bath water.  She "wanted to ask a question.  I have blood on my panties."  I asked if she started her period and she didn't know.  I said that's probably what it is.  Told her to put a pad on after her bath.  She apologized about her panties.  I told her not to worry and I tried to stay very calm.  It is unnerving.  She had forgotten, you can see it in her eyes.

If only menopause would kick in too...

Sunday, September 4, 2011

Hay in the Barn

Mom wrote:
One afternooon shortly after we returned to NM, we went to my brother's house.  (Lyn was about 3 years old.)  After we were there about 30 minutes, I realized Lyn wasn't in the house.  Panic set in because she was normally my shadow.  I left you on the floor on a blanket and told your brother to watch you.  The 4 adults ran outside, calling her.  Their house bordered a ditch which had no water, fortunately.  All of a sudden, my brother said for all of us to stay put while he went to check the barn.  His wife lost all color and began to shake.  I had no idea what was going on but I froze.  He went in the barn and we couldn't just stand there so we went behind him.  There she sat throwing hay up and laughing when it came down all over her.  The startling part was they had a hugh, very mean dog on a chain.  Lyn was sitting right in front of the dog and the hay would land on his nose as well.  She would dust it off and laugh.  The dog's tail was wagging.  My brother just kept saying "don't anyone move."  He slowly went over and picked her up and backed out with her.  The dog began to growl.  All I could see was the dust and hay all over her and KNEW she would have problems breathing.  HA!  We washed her off from head to toe, put one of his undershirts on her and went home. 
That was the last significant time her breathing was worried about.

Saturday, September 3, 2011

Made in Italy

Lyn was "Made in Italy."  I was "Made in America."  We're properly labelled here.

Mom found the Italy label in something and stuck it on Lyn.  I guess I wanted a label too.  Mine was done on masking tape.

Lyn was born in Italy in 1971 while our father was stationed there with the Army.  She was 6 weeks premature and weighed only a couple of pounds at birth.  Mom remembers using Men's handkerchiefs cut in half and folded down as her diapers. Lyn was deeply ill for the first three years of her life.  Mom had to keep Lyn in an upright position so she could just breathe when she slept.  There were times Mom sat in the rocking chair with Lyn in her lap all night so Lyn could breathe.  Her illnesses included pink-eye, chicken pox, bronchitis, pneumonia (3 times), German measles, asthma, and numerous upper respiratory infections.  Mom writes:

     I believe she would have been a SIDS baby if I wasn't used to going in her room many times when
     she "slept" because she would stop breathing.  A few times, I went in and found no movement or
     sound.  Her lips and fingers were blue and she didn't gasp for breath when I grabbed her up.
     Thankfully, we lived about 1 mile from the hospital.  I'd grab my purse and rush to the ER.   By that
     time, she was coming around.  If she had nice color in her cheeks, like a normal child, I knew she
     was running a high fever.

When our father's time in the Army ended, the family returned to NM where the Lyn's health improved dramatically.

Friday, September 2, 2011

Change of Schedule

Mom has decided to change Lyn's schedule a little.  She has declared Wednesdays to be lazy days from now on.  Lyn's got regularly scheduled activities on Tuesday, Thursday, Friday and all day Saturdays.  On Sunday, they have church and chores around the house.  On Monday, she meets with her speech therapist. So, unless there is a doctor's appointment scheduled, they won't be running errands or going out on Wednesdays any more.

In protest, Lyn announced Wednesday morning that she wasn't even going to get dressed.  She was a bit disappointed when Mom said "Not a problem!"  After a late breakfast and a bit of peach cobbler, Lyn decided to take a short nap at 2.  Mom had to wake her at 5 for dinner.

For a lady who is retired and another with no serious obligations, they have kept themselves very busy over the years.

Thursday, September 1, 2011

A Busy Weekend

Lyn's respite provider had a training obligation this weekend as part of keeping her license up to date.  As a result, she was unavailable for their normal Saturday jaunt.  Lyn offered to help Mom with the wedding at their church.  (Mom is one of the church's wedding coordinator's.)  Mom says Lyn was particularly helpful for this wedding.

On Sunday, they drove up to Santa Fe to view an exhibit at the Wheelwright Museum.  Lyn expressed a desire to be home in the early afternoon because she didn't want to get anxious.  Mom agreed to make it an early afternoon.  They drove up, enjoyed the exhibit and were home mid-afternoon.

When Lyn had her speech therapy session this week, she was able to remember what they did over the weekend.  She remembered where they went and that she was helpful at the wedding.

It is interesting to me how there are times when she can remember and times when she cannot.  We never know which will happen.