Monday, January 21, 2013

Hubris


It has been two months since Lyn saw the new neurologist.  He had promised to send Mom information about medication which she and Lyn should consider.  He also promised to send Mom a copy of his report.  He had asked Mom to leave with him her copy of Lyn's MRI images which were on CD.

Since Mom hadn't heard from him in so long, she reached out to his office last week after learning that Lyn's primary care physician had received the report from the neurologist over a month ago.  With disappointment, we have to report that the CD with the MRI images appears to be lost.  The neurologist never sent a report to Mom and his report to Lyn's primary care provider indicates that Lyn doesn't have Down's Syndrome and that he sees no logic to support an Alzheimer's diagnosis.  

Mom is, understandably, deeply frustrated.  Many years ago, the medical community didn't want to believe it was possible for individuals with Down's Syndrome to have Alzheimer's.  Now, it is accepted  that having Down's places the individual at high risk for early on-set Alzheimer's.  I believe what we're running into is much the same thing.  

Lyn is intellectually disabled.  She's had brain damage from birth. Thus, they believe, this is a natural progression of her brain damage.  The two neurologists who have examined her cannot see beyond their own experiences with or their  preconceptions of the intellectually disabled to see that she can have both an intellectual disability and Alzheimer's Disease.  I believe hubris is in play here.

If this was a natural progression of her brain damage, wouldn't we have seen decline through out her life?  She learned and achieved for decades, even after the year of seizures.  If this was just her intellectual disability, would we expect to see dramatic loss of life skills in such a short period of time?  For example, when I visited in December, she was only occasionally asking Mom to help her tie her shoes.  Now, she can tie the right shoe but not the left.  She has even had to switch to a different bowling bag because the one she had was too difficult for her to manage.  Her new more simple bag was a birthday gift  last week.  

No.  These changes are not just a result of her intellectual disability.  They is not a result of her "faking it" or some Munchausen-like report from Mom.  They are the result of her brain dying due to Alzheimer's.

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