Our family went to Harborview Medical center on Nov. 16 to see
Dr. Ruth Kohen. She specializes in memory and brain wellness and was referred
by Marcus’ primary care doctor. Before meeting with the doctor, we met with the
resident physician who asked a series of questions. She first started with
Marcus, asking him what his day-to-day looked like, if he had trouble remember
things, etc. To our surprise, he let her know that he had an office job (he didn't mention anything about being a Cardiologist like he did the day before). He answered the questions in a very matter-of-fact kind of way. We had to restructure many of the questions that was asked so that he could
understand what exactly she was asking. Very simple questions were difficult for Marcus to understand.
After visiting with the resident physician and Marcus getting his "interview" questions, Dr. Kohen then joined the meeting. She had all of Marcus' medical records from previous doctors, which was very comforting for us. After much discussion and going through several pieces of information, she stated that although Marcus has many of the same
traits and behaviors as someone with Dementia, she does not believe that what
he is facing is simply dementia. She believes that he has a major neurodegenerative disorder that
has started in early adulthood and continues to progress. She stated that most
neurodegenerative disorders that affect memory share many of the same features
of dementia such as confusion, memory loss, agitation, and irrational behavior,
to name a few. If Marcus was man in his 80's, she wouldn't hesitate to diagnosis him with Dementia. Since he is so young, she believes this type of decline is due to a neurological disease that imitates dementia. At this time, we are being referred to the UW Adult Autism Clinic, also known as the Adult Developmental Disease Clinic where we hope to get some
answers as to why he is progressing
and what may be causing this.
I asked the doctor what she felt the next couple of years
would look like and she didn’t know. At best, she hopes that the Adult Autism
Clinic would be able to have a treatment plan for us to help manage things.
Although that is unlikely, she said that was her most optimistic answer.
Her more realistic answer was that Marcus will continue to decline, especially
because it is unknown as to what is causing the downhill progression. She is hopeful that the Adult Autism Clinic would be able to provide more resources for long-term
care and can conduct more in-depth testing of the brain.
Surprisingly, there were not too many tears shed. We have
gone through difficult doctors’ appointments such as these and although there
are so many unknown’s, we feel we are headed in the right direction to get a
clear prognoses on what Marcus’ future will look like. We know that we have a role in all of this - we will continue to seek the right doctors and move forward in finding answers. In the meantime, God gives us strength, comfort, and patience for Marcus' ever-changing behaviors.
