Wednesday, August 31, 2011

A Rainy Afternoon

Lyn was particularly nervous Monday afternoon.  The sky was overcast for much of the afternoon with clouds heavy with rain.  Mom and Lyn live in a place where they get sunny days about 360 days a year.  The overcast sky dramatically changes the light and this causes Lyn's agitation similar to what we see in the late afternoon.  This is just one of the symptoms of her Sundowner's

Tuesday, August 30, 2011

Yep, that's backwards too

Lyn's 40 years old.  Lyn's fighting the effects of dementia.  Lyn just cut a tooth.  It is a molar.

After her visit to the dentist earlier this month, she complained that her mouth hurt and she thought the hygienist had nicked her.  It sounded plausible.  Earlier this week, she complained some more saying that it hurt when she bit on something.  After she brushed her teeth, Mom looked in her mouth and saw the molar cutting through the gums.

Mom called the dentist because she knew that x-rays had been done in the December visit.  He checked the x-rays and his nurse called back.  He confirms that there was a molar slowly creeping its way to the surface.  When he saw her two weeks ago, it hadn't cut through yet.  He assures Lyn and Mom that there is plenty of room for the tooth and it is not going to be impacted.

Mom writes:  "While it is unusual for a molar to come through at her age, it is not unheard of.  Yeah, leave it to one of my kids!"

Monday, August 29, 2011

Pretend You Love Each Other

"Pretend you love each other!"

It was a command, not a request, that Mom would issue just before we marched out the door into public.  It was a reminder that no matter what squabbles were being dealt with at home, we were to still show respect and common courtesy to each other.  As a single parent of children with special needs, Mom had a lot to juggle and expected our help along the way.

We needed these reminders to love each other though.  Like every sibling set I've ever met, we had our fights.

They weren't all with Sock 'Em Boppers and they were sometimes pretty rough.  I remember a particularly well placed kick from Lyn against my shin.  That kick landed Lyn in the ER with two broken toes.  I don't remember what that fight was over but I do remember she wanted to teach me a lesson.  It was probably the angriest I've ever seen her.

For the most part, Lyn just wanted to be included.  She loved being the center of attention.  She loves that even today.  When I came along, I was showered with her love right away.  She would play with me and talk to me.  She was a happy girl.

As we grew, she was a near constant companion.  We shared a room until our teens.  I wore her hand-me downs.  We shared the toys in our room and played with many of the same kids.  We were together so much that I served as her interpreter for many years.  When Lyn gets excited, her words get jumbled and she becomes a little hard to understand.  I would have to translate her thoughts even to Mom.

I don't remember a time when Mom told me I had to care for Lyn.  It was just something that happened.  There were times I resented Lyn.  There were times I was angry at her for being Lyn, for being different, for being always around.  Pick a reason.  I'm sure I've been angry over that too.  Heck, for a long time, I was angry that she woke up happy.  You see, she's a morning person and I'm most definitively not.

She taught me what she knew and did her best to guide me along.  She was my big sister who tried to take care of me.  Then one day, I realized that I knew more than she did and that it was never going to change.  I remember feeling like I was given something stolen from her and grieving that difference.  At that point, our roles switched and I became the big sister.  This annoyed her because she knew she was older and that meant she should have been the one in the lead.

Despite this realization and sometimes because of it, we still squabbled or simply disagreed.  She still wanted to play Uno every single night. I got annoyed but played Uno every single night.  We still loved each other even when at our worst.  We stood up for each other and tried to help each other out.  Unless, of course, she was ratting me out.

Even though I couldn't take a nap without her beside me, I wouldn't be the person I am if she hadn't been my sister.  And no, we don't have to pretend we love each other.

Sunday, August 28, 2011

Two Games or Three?

Here is the tale of this week's bowling as reported by Mom:
When Lyn got home from bowling, I asked how she did and she remembered one score, 117.  She didn't remember the other one.  When her respite provider came in the room, Lyn asked for her scores.  Her respite provider reported her scores to be 92, 93 & 117.  Lyn didn't remember they bowled 3 games instead of 2.  They will be bowling 3 games between now and November.  National Special Olympic rules say they are supposed to bowl 3 games for competition.

Saturday, August 27, 2011

Backwards Brain

I mentioned in my last post that Lyn doesn't always remember what she wants to tell you.  She does remember that she wants to tell you something though.  She has started saying, at those moments, that her "brain is working backwards."

Lyn has explained that when her brain is working backwards, the thing she wants to tell you is not going to come out.  She knows it is there.  She just cannot get her brain to turn around and work right, allowing her to tell you what she was just thinking.

Mom is trying to make it a light moment when the backwards brain kicks in.  There's no need to play 20 questions because that will just lead to frustration and confusion.

Sometimes, like this, the way Lyn describes a situation is just right.

Friday, August 26, 2011

Dementia Symptoms

We've talked about the various types of dementia and what treatments are available.   We've talked about a definition of dementia and of intellectual disabilities.  We've talked about how dementia is diagnosed.  We've started cataloguing Lyn's changes.  We've not yet discussed the various symptoms of dementia.  Some of them have come out in the various posts to date.  However, it may help to have the symptoms listed out for us.

The Mayo Clinic comes through for us with a concise list of the symptoms.  It includes the following:

  • Memory loss
  • Difficulty communicating
  • Inability to learn or remember new information
  • Difficulty with planning and organizing
  • Difficulty with coordination and motor functions
  • Personality changes
  • Inability to reason
  • Inappropriate behavior
  • Paranoia
  • Agitation
  • Hallucinations

This list is based off of a population of patients who do not have intellectual disabilities.  While helpful, Lyn does have intellectual disabilities and we should factor that into the equation.

In September 2007, the Journal of Intellectual Disability Research published a study titled "Symptoms of dementia among adults with Down's syndrome: a qualitative study" by S. Deb, M. Hare and L. Prior.  In it, they point out that dementia may be difficult to diagnose because of "the different clinical manifestation of dementia amount people with intellectual disabilities."  Their study points out that the existing intellectual disability makes some of the initial cognitive diagnostic tools used in diagnosis invalid.  For example, if the patient is unable to complete simple math equations to begin with, then how can a test which asks the patient to complete simple math equations be effective?

As a result of the cognitive impairment, it may not be as obvious that a patient is unable to learn or remember new information as it is in a patient who is not cognitively impaired.  If the patient already had difficulty communicating, then a decline in communication skills may also go overlooked in the early stages.  They point out that some of these changes may, in fact, only be noticed by the individuals who are caring for the patient in question.  However, the study does point out that other changes, such as those to the patient's personality, moods, and sleep patterns may be noticed earlier than in patients without an intellectual disability.

The study lists as symptoms several types of memory impairment, confusion, problems with instructions, slowness, speech and language problems, sleep problems, loss of skills and several more.  Of particular interest to me are the symptoms they list which we already see in Lyn:

  • Procedural memory impairment - Lyn now requires direction on steps necessary to complete some routine tasks such as taking out the trash.  She also no longer knows what button to push to turn the car radio to her favorite station or which button(s) to push on the tv remote.
  • Episodic memory impairment - Lyn is no longer able to tell you what she did or ate yesterday consistently and cannot tell you what she did last week.
  • Spatial memory impairment - Lyn does not always remember where something is located.  This is particularly noticed outside of her home environment.  For example, Lyn didn't know where to look for an item when I said "on the coffee table in the living room" when last she visited my home.  We had to say "Turn around.  Do you see the table?  It is on the table."
  • Other memory impairment - Lyn forgets what she wants to tell you.
  • Confusion - Lyn gets confused when she is not 100% sure of where she is.  She's been confused with the onset of her period.
  • Problems with Instructions - Lyn now struggles with multiple instructions given together.  She does much better if you give her one step to complete before she goes to the next.
  • Slowness - Lyn is moving more slowly. 
  • Speech and Language problems - Aside from forgetting what she wants to say, she is now repeating questions.  She trails off mid-sentence.  
  • Sleep problems - Her sleep patterns have changed pretty significantly.  While the study indicates a lack of sleep or a flip to sleeping during the day, Lyn's sleeping more, much more.
  • Loss of skills - Lyn needs significant prompting to complete tasks which were previously routine such as taking out the trash or tending to certain personal hygiene needs.
  • Balance problems - Lyn is shuffling more in her walking.  She needs assistance to step up or down even one step such as at a curb.  
  • Lack of confidence - Lyn used to be pretty fearless.  There is a timidity and a questioning of herself that was not there previously.  
  • Emotional problems - Lyn bursts into tears easily and has emotional outbursts which seem to come with little or no warning.
  • Covering up - One of the symptoms that stood out to me was this one.  They mention that some of the patients tried to cover up for their loss of memories.  I see this with Lyn.  However, Lyn is currently trying to cover up her loss of skill and procedural memory.  For example, if she doesn't remember how to turn on the tv or change the radio station and you're not right there ready to do it for her, she'll say "I don't really want to watch tv" or "This station is OK."  It may seem like a change of mind to most people.  Not with Lyn.  If Lyn wants to watch Cops, she's not going to suddenly decide to not watch tv.
Lyn does not have Down's.  This study may not be 100% applicable.  However, I do find it illustrative of much of what we're seeing with my sister.

Wednesday, August 24, 2011

Another Dementia Blog

I came across the Dementia Blog maintained by Diane Thornton.  Diane was diagnosed with dementia a few years ago and has written a first person account of her experiences.

I've linked to her first post above.  She hasn't posted very frequently; sometimes, only once a month.  However, some of her writings provide an insight into dementia that mine will never be capable of doing.  For this reason, I'd like to direct you to the following posts:

Bad Brain Day
Blissfully demented: Coming to peace with your dementia
You've been diagnosed with dementia - now what?
Searching for Home
Find the Joy in the Now

Would Lyn write posts similar to these if she could write?  I don't know.  In all honesty, it doesn't matter if she would because Diane has written these posts and more.  They are providing me with an insight into my sister that I didn't have before.

I flew out to see Mom and Lyn this weekend.  It was a quick trip and Lyn was looking forward to it even though I had just spent a week with them.  Saturday evening, I was standing with Mom, chatting over the kitchen island.  Lyn came in from the next room to demand that Mom come sit with her.  She was clearly irritated.  I assumed that she was irritated that we weren't directing our conversation so that she was the center of attention.  After reading some of Diane's posts, I now wonder if, instead, Lyn's outburst was simply a symptom of her dementia.

Tuesday, August 23, 2011

Today's Speech Therapy Session

Mom wrote:

Speech therapist is here.  She, as always, asked what Lyn she did over the weekend.  She has quit asking about the entire previous week.  Lyn struggled so much just to tell her that she was with Michelle on Saturday.  After several questions, Lyn told her they went to Weck's for breakfast.  She finally remembered she had eaten a Bowl of Pappa's while there but didn't remember what they did the rest of the day.  The therapist suggested that perhaps with me nearby a word or questions might help her remember.  She told Lyn it was important to remember what she did or where she went.  I asked her what we did after she got home.  She said "talked to my sister" until I asked her if we went any place for dinner.  Then she remembered El Pinto and what she ate.

Sitting here listening to them work makes me want to cry.  Lyn is struggling so much with her reading.  She guesses so much and her therapist is wonderfully patient.  Lyn seems to have "forgotten" a word she read a few minutes earlier and they work it out again and again.

The prior report stating that she's up to 100 sight words wouldn't apply today I think.

Monday, August 22, 2011

Short Term What?

Friday night, Mom wrote the following to me:

Normally on Fridays, Lyn is picked up by her respite provider by 4:30 pm.  Today about 4:00, she called and said she was running late & would pick her up between 5:00 & 5:15.  As soon as I hung up the phone I called Lyn and told her.  She said "ok, traffic is bad on Friday."  I agreed & left it at that.  She turned, went into her room then immediately came back and asked "is (she) getting me today?"  I said "yes, but remember she'll be a little late and be here at 5."  She went back to her room then in about 5 min came back and asked me the same thing.  I told her I must have forgotten to tell her that her respite provider will be a little later than usual but she will be here.  She came back a 3rd time and asked again.  She really didn't remember.  I could see it in her eyes.  I told her "yes, she will be here."

A couple of months ago I would have gotten mad, told her she wasn't paying attention and probably wouldn't have repeated my answer so much.  But with what's been happening I have found a well a patience and reached down into it.  I watch Lyn’s eyes which tell me more than her mouth.

Sunday, August 21, 2011

Bowling Scores

Lyn had bowling today.  Afterwards, Lyn and her respite provider met her husband for dinner afterwards.  I have not yet met him, but both Lyn and Mom speak very highly of everyone in the respite provider's family.  They have included Lyn in their family events such as a barbecue birthday party for two cousins.

The respite provider's husband always engages Lyn when he sees her.  Tonight he asked her how many games she bowled and how her scores were.  Now, this was about half hour after she left the alley.  She looked confused and said "we practiced then bowled the usual way."  The respite provider asked Lyn how many games did they bowl and Lynn didn't know so she said "two" and Lynn said "oh yeah."  Her husband asked about Lyn's scores and Lyn said "they were ok."   Lyn had to be reminded of the scores being over 100.  Lyn just nodded her head.

It is highly unusual for Lyn to not remember her scores.  Is this a change or a fluke?  I suspect it is too early to know but we'll note it in case it becomes a pattern.

Saturday, August 20, 2011

Dear Neurologist

Lyn's speech therapist offered to write a letter to the neurologist recording the changes she has observed.  She wrote:

"I am Lyn’s long time Speech Therapist.  I was asked to describe the cognitive changes that I have observed recently with Lyn.

Expressively, Lyn is demonstrating word find difficulties when she is discussing remote events or places that she has attended.  (In this case, remote events would be described as places or things she has done over the previous weekend).  Lyn has always had difficulty with sequencing her stories together but she is now demonstrating difficulty with finding words in her conversations.  In addition, she is generally more hesitant to answer questions about these remote events.  She will often state that she “cannot remember” and then she will ask her mother for assistance in answering the question.  She seems to lose her train of thought easily in conversations.  She appears to have good recall of the most immediate events.

In therapy, Lyn and I work on increasing her sight reading skills.  She is still learning new sight words but it is taking much more practice with each word.   Lyn continues to be very excited about working on her reading skills.

I have also seen an increase in her irritability.   She has always been very cooperative in therapy but recently she has begun to be resistant to some of the tasks in therapy.  Her eye contact with this clinician has also decreased."

We so greatly appreciate the many hours of care she has dedicated to Lyn.  This note is just one of the ways she supports her clients.  

Thank you.

Friday, August 19, 2011

Two Doctor Visits this week

Lyn had a physical today by her new primary care physician.  Lyn was cooperative and in a good mood.  She did not want to have Mom in the waiting room for the exam when she normally would.  Mom theorizes that it is because Lyn does not like the new primary care physician.  Nothing unexpected came out of the exam.  A previous physical had been done by the physician's assistant that Lyn prefers.  Unfortunately, this exam was not accepted by the state as part of the disability care program in which my sister participates because it was not performed by an MD.

Earlier in the week, Lyn had her semi-annual dental visit and cleaning.  Mom wrote the following about that visit:

"We just got back from Dr. H's, dentist.  I told him of this new development.  He's so very nice and understanding.  Told him what the PCP  said about her breathing causing the brain damage.  He said "sleep apnea is the new, popular problem for everyone."  Said he had other patients who have been told the same thing lately.  LOL

He said he's always sorry to hear of anyone developing dementia but more so with Lyn.  "Aside from her being so young, she is so delightful and the thought of that changing is sad.  Lyn is one of the sweetest patients (he) has."  The hygienist always enjoys Lyn's update on bowling and was so excited today about her new, orange/white bowling ball.

We were done quickly but Lyn was bummed that they were out of toothbrushes.  Their delivery hadn't arrived this week."

Thursday, August 18, 2011

Young-Onset Dementia

In my readings, I've come across a term that was new to me.  It is "Young-Onset Dementia."

Young-Onset Dementia is dementia that begins before the age of 45.  Early Onset Dementia covers dementia which happens between the ages of 45 and 65.  Some definitions of Young-Onset Dementia includes anything before 65.  A Mayo Clinic study found that Alzheimer's Disease was not the primary cause for Young-Onset Dementia.  It was more likely to be a "neurodegenerative or autoimmune/inflammatory condition."  A Johns Hopkins Alert lists several of these conditions, including Creutzfeldt-Jakob disease.

The doctors who conducted the Mayo Clinic Study, Brendan J. Kelley, MD, Bradley F. Boeve, MD and Keith A. Josephs, MD MST have also written the following related articles:

Young-Onset Dementia: Demographic and Etiologic Characteristics of 235 Patients
Rapidly Progressive Young-Onset Dementia 
Cognitive and Non-Cognitive Neurological Features of Young-Onset Dementia

One of the challenges that Young-Onset Dementia presents is that most dementia related services are geared towards the geriatric patients and it may be a challenge for a patient in their 30's, for example, to receive the needed services as a result of their age alone.  Despite this, caregivers are encouraged to reach out to local resources for the aging and the Alzheimer's Association for assistance.

While the research on Young-Onset Dementia has focused on individuals who were not intellectually disabled at the time of diagnosis, the research articles are interesting on their own.

Additional Information Sources:
Young Dementia

Related PubMed Central Articles:
The diagnosis of young-onset dementia 
The prevalence and causes of dementia in people under the age of 65 years (pdf)

Wednesday, August 17, 2011

Wondering if I'm Crazy

Mom wrote: Lyn started her (August) period Saturday while out with her respite provider.  (The one you mentioned in your TMI post was actually her July period.  Sorry for the confusion.)  I knew it was coming so I made her take a pad with her. Things, so far, have gone smoothly, no reminders needed. She has changed each day several times. Just like old times.

It is things like this that make me wonder if I'm imagining everything. Do I panic with the 'changes' since April? Am I looking for something different with her? Am I letting my imagination run wild? If I listened to the medical establishment the answer would be "yes." I learned a long time ago not to always listen to them. If Lyn's respite provider and speech therapist didn't see a decline over the last couple of months then I would wonder about myself.  They work with her each week and know her very well.

Her new Primary Care Physician seemed to brush me aside a bit. She asked if Lyn snored. LOL, like a freight train. Well, she said that explains it! When she snores she doesn't get enough oxygen to her brain--this is the cause of the brain damage. I asked her to please repeat what she just said to be sure I understood. She repeated and I just said "oh".

She asked Lyn if she cleaned her book shelves over & over.  Lyn said "yes, when I want to." I told the doctor that Lyn isn't obsessive compulsive about anything if that's what she's asking. She said that's what she was asking and was surprised that she does not have OCD. Maybe it's just me -- that was STUPID. We'll stick with the PA & not the PCP for everything except the physical. Since the State requires the PCP to do the annual physical that's all we'll see her for and continue with the PA on the dementia journey.

The neurologist who read the EEG said that since there is no sign of a stroke or seizure activity the brain is normal therefore the patient is normal & there was no need to see her. I refused to accept that and the PA agrees with me. So on 9/8 we'll see a neurologist with another practice. I'll take our copy of the MRI. The PA said they'll fax him everything but I hope he actually looks at the film.

Tuesday, August 16, 2011

The Neighborhood Kids

When we were growing up, we lived in a neighborhood on the edge of the city. The community was essentially a giant rectangle with the houses and cars on the two long edges and the community and maintenance facilities at the two short ends. In the middle, there was a park with walking paths, hilly lawns, a playground, tennis courts and a pool. It was a very safe place and the kids were allowed to run free through the neighborhood.

The kids were pretty open to each other. There were cliques, sure, but they mostly reflected individual preferences for each other and not groupings by popularity or clothing. There was definitely groupings by age divisions. The older kids, for example, couldn't be bothered much to interact with the younger kids.

It was common in the summer evenings for mass Hide-and-Go-Seek games to be held. These games would span the an area of about an acre, had defined boundaries and specific areas where you weren't allowed to go. The kids knew which families were fine with their yards being used as part of the neighborhood kid areas and which families wanted their yards to be off-limits. The base was usually a street light that was close to the center of the defined space. Those games would last over an hour and had as many as 25 kids running around.

The neighborhood kids all knew each other. We knew who we could trust and which homes we had permission to visit regularly. The neighborhood kids all knew my sister and, for the most part, they looked out for her.

I don't remember the kids teasing or picking on Lyn much at all. I do remember that Lyn would get permission to go to the playground on her own pretty frequently. She liked to swing. Even if I didn't want to go too, she would usually encounter someone she knew and have a good time.

There was one occasion, however, that she came home in tears from the playground. There was a new boy who was there. He had started picking on her and calling her names when he realized she was different. When she got up to leave, he stuffed a grasshopper down the back of her shirt and squashed it.

We were instantly angry and headed out to find the boy. When we got to the playground, there were several kids milling about the equipment. They all turned to us as we approached. Two of the bigger boys approached. We demanded to know who killed the grasshopper on Lyn's back. We were ready for a fight and were looking for it.

The neighborhood kids then told us who the new boy was, confirmed what he had done and confirmed that he had gone home. He was home after having received a beating by some of the neighborhood kids. They didn't want him to get away with hurting Lyn. They didn't want him to think it was OK to pick on her. They wanted to let him know that Lyn had more than her family looking out for her. By the time we got there, the fight was over and the kid was out of sight.

The boy never bothered Lyn again. He actively avoided her if he spotted her. Lyn didn't go to the playground by herself for a while. She didn't want to see the boy or get picked on. Eventually, she relaxed and was able to enjoy the swings on her own again. As for us, we felt frustration over not being able to teach the boy a lesson ourselves. However, I was also proud of the neighborhood kids for looking out for Lyn that day.

Thanks, guys.

Monday, August 15, 2011

TMI Time

It is officially TMI time. Please accept my apologies.

In the effort to document the changes we're observing in my sister, I'm not going to be leaving anything out; not even the personal hygiene issues. Here we go...

Last month, when Lyn's period started, she completely panicked. She screamed that she was bleeding and didn't know why. Once Mom reminded her it was her period, she calmed down. Through out that week, Mom had to remind her multiple times a day to tend to her hygiene needs.

This month, she didn't panic gain. She came out of the bathroom and announced that she had started. Mom asked her if she had put on a pad. Lyn was confused. She didn't know why she needed one. Mom had to direct her back into the bathroom to put one on. As with the month before, Lyn needed multiple daily reminders to tend to her hygiene needs.

It will be interesting to see how it goes next month.

Sunday, August 14, 2011


Lyn goes bowling at least once a week. Sometimes, she goes twice. Lyn loves bowling. It is as much a social event for her as it is exercise. She bowls competitively with Special Olympics as do a number of her friends.

This week, Lyn got a new ball. It is orange and yellow and weighs 10 pounds. She is very excited to have a new ball. Her other one, a sparkly blue, had rolled many miles and was nicked. Over the past couple of years, she's put on weight and her fingers weren't fitting the holes well any more. When she got to the bowling alley, she went to the pro shop, picked out her new ball and was fitted quickly. Within 30 minutes, she had it and was ready to start her first game.

Since she has a new ball, I thought it might be a good time to start tracking her scores. It may seem like an arbitrary measure, but it may give us a consistent measure since she bowls on such a regular schedule.

This week's score was done with the new ball, of course.

First Game: 127
Second Game: 94

Lyn was thrilled!

Friday, August 12, 2011

The Litmus Test

Lyn is my litmus test.

When you have an important person in your life who has something different about them, you become very aware of how they are treated by others. Unfortunately, not everyone is comfortable around individuals with differences. The person is "other" because they may have a different skin color, accent, religion, sexuality. The person may have a physical or intellectual disability, a mental illness or have some other characteristic which makes them stand out from whatever is the norm.

Lyn may not look obviously different, especially when she was younger. However, within three sentences, you can tell she is different. Within a few more sentences, most people clue in to her intellectual disability. It becomes evident very quickly who is comfortable around her and who is not comfortable. Since Lyn is important to me and because her care is within my realm of concern for life, someone who treats her well immediately is someone I'm more open to befriending. Someone who treats her poorly or discriminates against her will never become part of our lives.

I'm not here to change lives. If someone is genuinely uncomfortable with her disability, I can acknowledge and respect their feelings. Their feelings are real to them. All I ask of them is that they treat her with respect despite their own feelings. As with anyone who is different in any way, Lyn deserves common courtesy.

Thursday, August 11, 2011

Tim's Place

Lyn like's Tim's Place. I can totally see why.

Earlier this week, we went to Tim's Place and had a great meal. But, that's not the point of this post. Tim's Place is an inspiration as is the restaurant's founder, Tim. Tim has Down's Syndrome.

As a volunteer for Special Olympics, I have met hundreds of individuals who have exceeded expectations. They are people who are not defined by their disability or any one medical condition. I have been fortunate to meet families who have not limited their children and have, instead, supported their endeavors to whatever level their children are capable of reaching. Clearly, Tim's family is one of these families.

When we walked into Tim's Place, we were greeted by every staff member on the floor. I recognize that their corporate policy is to greet customers. However, there's a difference between greeting out of obligation and greeting because you're genuinely happy to be there and like what you are doing there. The greetings we received were the genuinely happy ones. The waiter, the manager and Tim, himself were all invested in making sure that we had a good meal and a good experience.

Our conversation with Tim and being in his restaurant reminded me that Lyn's recent diagnosis does not need to define her. It is just one more challenge in a life filled with challenges. She didn't learn to speak until she was five but she learned. She isn't able to drive, doesn't own her own home, but she worked at Wendy's for 19 years. She's pays her taxes, has dated and maintains lifelong friendships.

Wednesday, August 10, 2011

What is "Intellectual Disability"?

Intellectual Disability is a significant limitation in a person's mental capacity. This can be documented with a low scoring IQ test. The individual may not be able to solve problems, adapt to new situations or learn new information or behaviors. Because the person's mental capacity is diminished, their ability to appropriately interact in social settings and their ability to manage their daily lives may be limited as well. If you are unfamiliar with the intellectual disability, you may be more familiar with the term "mentally retarded."

An intellectual disability can be a result of a genetic condition such as Down's Syndrome. It can be the result of a fetus not developing properly during pregnancy. This can be the result of a number of reasons such as a pregnant woman suffering an infection or abusing drugs. A health problem such as malnutrition can result in intellectual disability. Intellectual disabilities usually occur before the person becomes an adult. In my experience, most are present when the individual is born.

Having an intellectual disability can impact a person's life to varying degrees. There is no one severity for it. It is a spectrum. A person can be profoundly disabled and unable to tend to their most basic needs, functioning at much the same level as an infant. Alternately, a person could be mildly impacted and be able to live fairly independently. Everything in between is also possible.

Additional Information Sources:
American Association of Intellectual and Developmental Disabilities
National Dissemination Center for Children with Disabilities
The Arc

Tuesday, August 9, 2011

The Human Connectome

Just after my sister's initial diagnosis, I flipped through the July 2011 issue of the National Geographic magazine. I was stunned by a beautiful image of the brain. Only, it wasn't the brain itself being shown. The image showed the connections within the brain.

This link led me to The Human Connectome Project at Harvard. The project is currently mapping the connections within the normal, healthy brain in order to understand all those connections.

Once scientists have grappled with the connections within the healthy brain, I deeply hope they look towards the connections within brains that are not healthy. For example, what would the connectome of an Alzheimer's patient look like? I expect connections would be missing. What about a patient who has relearned skills lost due to a stroke? What would their connectome look like? Would there be connections in unanticipated places? We speak loosely about the brain rewiring itself. Maybe this imaging method could actually show that to be true.

Additional Information Sources:
Sebastian Seung's Ted Talk - I am my connectome
Connectome -

Rio Grande Gorge

Today's day trip took us North to Taos and the Rio Grande Gorge.

Lyn knew this was our plan for the day. We arrived in Taos at noon, found a place to park and headed in for some lunch. As we walked the few blocks from our parking place to the restaurant, Lyn had a bit of a tiff. I honestly don't know why she got snippy. I'm not sure she would be able to express it even if she understood her motivations. A quick reprimand from Mom resulted in a brief, 10 minute pout which was alleviated by the ordering of lunch.

After lunch, we headed out of Taos to view the Rio Grande Gorge. It was a short trip to the pull-off and then an easy walk to the viewing spots on the bridge which spans the gorge. The river was 650 feet below us.

Lyn did well during this part of the trip though she was a bit unsteady when stepping on or off the sidewalk. She seemed very comfortable standing on the observation platform, looking down into the gorge.

We drove towards Cimarron before catching I-25 back towards Lyn's home. By the time we were out of Cimarron and the surrounding mountains, it was 5pm. The sun was still high in the sky. The shadows were beginning to lengthen. Lyn panicked. She didn't know exactly where we were. She was also tired. She said "I have a bad feeling." When I said "About what?", she burst into tears. We knew we were still a couple of hours from home. So, we stopped for dinner and then completed our drive, arriving home after dark.

A couple of times during the drive, we had to point out that no one was ignoring her. We were interacting with her as best as we could in the car. She is so used to being the complete center of attention that she struggles a bit when we visit. When she goes out with her respite provider, it is complete one-on-one time. When we visit, the needs of multiple people have to be factored into the daily planning.

She and Mom have decided that she needs a quiet day tomorrow. We'll head off and do our own thing. I'm sure Lyn and Mom will do something out of the house, even if it is just running for a gallon of milk.

Sunday, August 7, 2011

Abo Ruins

Today, Mom and I took everyone to Abo Ruins outside of Mountainaire, NM. It was a spur of the moment trip because our original plans fell through. The important point for Lyn is that we DO something today, even if it wasn't what was originally scheduled. Something as simple as running to purchase a gallon of milk satisfies her "must do something today" need.

I've never been to Abo before and it is beautiful. It was occupied for over 600 years and much of it remains unexcavated today. The ruins are made of red sandstone pulled from the nearby land and stacked into walls that are up to five feet thick. Some of the walls were more than thirty feet high.

The ruins have a well made path which should be easy to navigate even in a wheelchair. There was one spot, and only one, which had three steps. Lyn needed assistance going down the three steps. There was no railing. So, she held onto Mom. Even though she was holding Mom, she was still a bit shaky.

Lyn enjoys trips, especially day trips. This way, she can do something, go somewhere, see something and yet know she'll be in her own environment when evening comes. Day trips make for a happy Lyn.

A happy Lyn makes for an easier day for everyone.

Friday, August 5, 2011

Another Exam

Lyn had an eye exam earlier this week. It was just her annual check up. The exam went well enough.

Lyn was unable to identify the letters they put up. She was able to identify the numbers. She couldn't read them from left to right. Instead, she called them out randomly. The doctor says she may need reading glasses in two years. Under the conditions, he might not even bother.

I have mixed feelings about this. While I am Lyn's younger sister, I just had to go into reading glasses this year. If Lyn's like the rest of the family, then she's mildly far-sighted. We typically end up in glasses in our 40's. I'm ahead of the curve, but I have a reading instensive life. Lyn's life is no where near that.

Over the next two years, is she going to notice any decline in her close range vision like I have? Is the loss of fine details at close range really going to have a negative impact on her life as it would mine? I do not know. The one skill that she frequently uses which may be impacted is her "stitching".

Lyn uses plastic frames and threads floss through it in various colors and patterns. She mostly makes placemats and coasters. I have a full set of placemats and at least 20 coasters that she's made for us over the years. That includes the one on my desk where I keep my cup of tea each day. Lyn's manual dexterity is insufficient to thread her oversized needles. Mom has always done that step for her. It will be interesting to see what happens with this hobby of hers.

The other area that gives me mixed feelings is the note from Mom that Lyn was unable to read the letters. It leaves me wondering what Lyn's speech therapist would say about it. Does Lyn rely upon other clues than the shape of the letter to identify it such as an accompanying image on a flash card? Is there a different mental processing going on when you just look at a letter than when you need to write that letter down. For example, can Lyn still write her name at the level that she has previously?

Thursday, August 4, 2011

Gathering Resources

I am employed by a company which provides good benefits. One of the benefits my employer provides is access to a hosptial affiliated employee assistance program (EAP). The EAP provides support for all sorts of life issues that are not just medical in nature. For example, when I first moved here and took this job, the EAP was helpful in securing daycare for my child.

Last week, I called the EAP line and asked for assistance finding information on dementia in the intellectually disabled. I specified that I was not looking for dementia in patients with Down's Syndrome because Lyn doesn't have Down's. Much of the information I am finding easily accessible on-line about dementia in the intellectually disabled is focused on those with Down's because they are at a much higher risk for it. The EAP counselor has started sending me articles and links to information. I've started reading through the material and plan to start sharing it here.

One of the things that is jumping out at me is that Lyn's intellectual disability does not put her at higher risk for early on-set dementia. Her risk of early on-set dementia is apparently the same as the rest of us at only 3% for 40 year olds. For patients with Down's Syndrome, the risk is closer to 25% for 40 year olds.

In 2006, Matthew Janicki, PhD, stated in a presentation that the challenges to assessment include a lack of knowledge of dementia assessment protocols, a lack of assessment services and a lack of familiarity of dementia among medical practitioners. I hope the 5 years since his presentation have reduced these challenges.

Wednesday, August 3, 2011

Appointment Scheduled

Lyn has been scheduled with a neurologist. Mom will be taking her to the appointment on September 8. We were hoping the appointment could happen while I'm at their house next week. It was a long shot when you think about how hard it is to get in with a specialist quickly. I've suggested to Mom that when the appointment begins, she should ask the neurologist if it is acceptable to call and put me on speaker phone. I would like to sit in, take notes and ask questions. I may not be able to attend in person, but I can participate via phone if the neurologist will allow.

More tests may be ordered.

*Fingers crossed*

Monday, August 1, 2011

Why an MRI and EEG?

Lyn's MRI and EEG both came back as "normal". However, something is going on in her brain. You don't forget how to manage a bodily function without something changing. So, that got me to wondering about these tests and why they're used in the diagnostic process.

When a doctor asks for a patient who is showing signs of dementia to undergo an MRI, the doctor is looking to see if something in the brain is causing the symptoms. The MRI can show if there is a brain tumor, head trauma, evidence of a stroke or a problem with the blood flow in the brain. The MRI is looking at the structure of the brain. A normal MRI would indicate that there is no tumor, no Lewy bodies or other abnormal clusters of protein, there is no bleeding and no apparent signs of stroke. It would also mean that there's no damage to the structures of the brain.

To me, this is the interesting part with Lyn's MRI. When Lyn was in high school, she had a year of seizures and had an MRI at that time. The neurologist pointed out the areas of her left frontal and temporal lobes where the majority of her brain damage was found. If there was damage in those lobes 20+ years ago, I would expect the damage to be evident in the MRI which was just done. As a result, I would not have expected a result of "normal."

When a doctor asks for a patient who is showing signs of dementia to undergo an EEG, the doctor is again looking to see if the cause of the symptoms can be determined by the test. The EEG looks at the function of the brain by monitoring its electrical activity. The brain functions could be interrupted if there is a brain tumor, a change in the blood flow, head injury or other causes of symptoms similar to those looked for by the MRI. A normal EEG will show regular brain waves from both sides of the brain. Spikes in the EEG indicate that the brain is experiencing a change in its activity.

So, both tests potentially allow us to see what could cause the dementia symptoms. They may not always give us a definitive answer however.

Additional Information Sources:
WebMd - EEG
Whole Brain Atlas
BrainInjury.Com - Understanding Diagnostic Tests