On June 23, 2016, Mom, Marcus and I traveled to the
University of California San Francisco’s Memory and Aging Clinic. The day
started out with a 1.5 hour cognitive test with one of three doctors that
Marcus would see. We arrived at the hospital at 8am and by 8:30am, Marcus was
in the back testing. We knew it was going to be a long day for him and we could
tell that he was mentally tired after that first test. Once this test was over,
Dr. Collin, a resident doctor, called us back into a room where we went through
Marcus’ entire history. Mom had sent over his records in advance and they had
done their homework on him. Dr. Collin asked SEVERAL questions about each stage
of his life, preparing to give a report before the main doctor, Dr. Michael
Geschwind, came to evaluate Marcus. Once the questions were done, he performed
a few physical tests on him where Marcus had to follow directions with
different body movements. He struggled with these simple instructions – at one
point, the doctor had mom and I performing the exercises in order to help
Marcus out. The simple “follow my lead” instructions are very difficult for
Marcus at this point.
After meeting with Dr. Collin for a few hours, we had a lunch
break before seeing Dr. Geschwind. As with the previous doctors, Dr. Geschwind had
done his research on Marcus’ situation and had met with Dr. Collin to discuss
at length the previous few hours. They both came to the same conclusion –
Marcus is indeed suffering from Progressive Dementia and it is progressing. A
year ago, Marcus had a cognitive test done where he scored a 30 out of 100.
This is an extremely low score. After the cognitive test was done at UCSF,
Marcus scored a 19 – he has dropped 11 points in approximately 1 year. This was
not surprising to us, however, as we have seen the deterioration happening.
When looking at Marcus’ past medical records, Dr. Geschwind noticed
his MRI that was done in 2008 was not “normal” for a 20 year old – he explained
that at that age, the brain should be “tight” with no unusual coloring. Marcus’
brain did not look like this. It was more “spread out” with space in between.
He also had “discoloring of white matter” on one area of his brain. Dr.
Geschwind wants another MRI done as soon as possible.
We will also be having an extensive genetic test done – this
will give us an idea on whether or not the dementia was brought on by his
previous health issues (heart surgery, head concussions) or if this is somehow
genetically-related. There is no family history of Dementia on either side of
the family, therefore making it that much more complex.
Since his practice is in San Francisco, Dr. Geschwind is
wanting all of the tests to be done at the University of Washington. The tests
will then be sent to him once they are completed. Depending on what is found
will determine how soon we go back to San Francisco. We are hoping to get these
tests done by Fall.
One of the first questions Dr. Geschwind asked us was “what
do you hope to get out of this appointment?” Although a somewhat complex
question, the answer was simple. 1) We wanted to get confirmation from the top
doctors in the field that this is, in fact, Progressive Dementia. 2) We are
seeking to find the reason behind why, at such a young age, Marcus got this
disease, and finally 3) what our options will be moving forward. We were very satisfied
with the answers Dr. Geschwind gave us and feel very confident in working with him
moving forward. He answered the first question which enables us to fully plan
for Marcus’ future. We have much to learn and will continue to seek out
resources. Dr. Geschwind is very intrigued by his case as well and is dedicated
to helping us determine what caused this disease. As we settle in on
determining the unanswered questions, we will find what options we have. Dr.
Geschwind has many colleagues whom will also look at Marcus’ case as they work
together.
When discussing the options moving forward, Dr. Geschwind,
was honest in saying that there is most likely no cure or reversing this
disease. He didn’t want to give false hope, which we appreciate. We have
accepted this. We understand that God has different plans for Marcus and we
will continue to share his story. What Dr. Geschwind did promise, however, was
to use his knowledge and resources in helping Marcus and our family with some
answers, tools and direction moving forward.
I’ve been very fortunate to be able to travel home every
weekend since May in order to help with Marcus and see my Grandpa before he
passed away. My job has been very accommodating and I’m thankful for that.
It’s been a tough month for our family. Many of you know
that my Grandpa Darrell Mills (Mom’s father) passed away on Father’s Day. He
was diagnosed with cancer in April and fought a hard battle for 2 months. My
family, along with a few other relatives, were able to be in the room when
Grandpa passed. Above all, he wanted to make sure Grandma was going to be taken
care of and we assured him we would make sure she was. In six months, my
Grandma lost her sister, a brother and now her husband. Her perseverance has
been inspiring for all of us. She plays a huge role in Marcus’s life as his 2nd
caregiver. Despite how difficult it is to care for Marcus at times, we are
hoping he continues to bring her laughter.
Thank you for your continued prayers, support and friendship.
You are a blessing to us!
Our family took a road trip to Canada over the 4th of July - here are a few pics!
