My History
When I was growing up, mental illness was
not something that was ever discussed. While it was obvious when someone broke
a leg and had a cast, and most other physical ailments were also obvious,
mental illness was not talked about. It was not something you could see and
there were few treatments available. But there were some that impacted me.
My Grandmother
The first was my father’s mother – my
“Nana Rogers”. She had been born in 1895 and so she was 53 when I was born. In
my early years I was not aware of any issues. She was still living with her
second husband and would occasionally visit. Her problems began to be noticed
(at least by me) when she was perhaps 60. It was around that time that her
husband, “Bampa Rogers”, went into an assisted living center when he was in his
late 80’s. At that time Nana also went into a nursing home. Today she would be
diagnosed with early-stage dementia, but back then it was not given that name.
Unlike many who have dementia and who get
more and more withdrawn, her reaction was to get more and more agitated. She
moved from place to place as the nursing home staff could not deal with her.
Eventually, she was moved to what was called (at the time), the Connecticut
State General Hospital for the Mentally Insane. Our family would periodically
go to visit her there – primarily going after church on a Sunday. My mother did
not like going in, so she would stay in the car with my younger siblings while
my dad and I went in.
The floor that she was on had smaller
rooms along both sides of a long hall and a large “day room” at the end. It was
a large well-lit room with windows on three sides, and a pleasant place to be –
although most of the residents probably did not notice. Those who were ambulatory
would often be found sitting on various couches/chairs around the room. Some
would wander around. Others, such as my grandmother, would be in wheelchairs.
Most were sitting quietly by themselves, but my grandmother’s symptoms included
being loud and complaining. Our visits were never pleasant. The staff probably
did as best they could, but it could not have been easy for them either.
She passed away in 1963 at the age of only
68. I’ve related that story before. But my first
exposure to mental illness was not pleasant.
My Father
My father’s dementia was much different.
It started much later in life when he was around 80 and he died at age 86. It
came on slowly and I would notice that when we went to visit that he would want
to go with me on a driving tour of the town and would show me the same things
that he had on the prior visit. He was not as sharp as he had once been. The
final few years he went downhill more rapidly and at the end he was confined to
a hospital bed that my mom had set up in the living room. Being a Christian
Scientist, he did not go to a doctor and he had no formal diagnosis of dementia,
but it was obvious to all around him. He passed away quietly just a few days
before my parents’ 60th anniversary.
Others
As I also age myself, I am more aware of
others around me who have various forms of dementia. One that was particularly
significant was our family doctor whose descent in his final years began almost
immediately after his retirement. He was also a family friend and attended our
church, so we were very aware of it. Initially, he was still attending, and his
wife would lead him around, but after a while he could no longer attend. We once
visited him and his wife in their home and he was silently walking around in
the kitchen, picking up a utensil and studying it from all angles. He did not
interact with us at all and seemed oblivious to our being there.
There are many others – my contemporaries
– going through various phases of dementia. I visited one man recently whom I
have known for several decades. It was a pleasant visit, but in the half-hour I
spent with him there were several stories that he repeated two or three times –
being unaware that he had just told me that a few minutes earlier.
My Motivation
When my grandmother died, Alzheimer’s was
not an available diagnosis. When my father died, it was, but that diagnosis
could only be confirmed by a post-mortem brain examination which can uncover
the amyloid plaques which are the hallmark of this form of dementia. But in
recent years there have been tremendous advances in both the diagnosis and
treatment of dementia. We have developed radioactive tracers which bind to the
amyloid plaques in the brain so that PET scans can detect them. In the last few
years, we have developed drugs which can be infused and which will slow the
progression of the disease (two of these now have FDA approval, but they are
fairly expensive). And recently we have developed blood testing which can
detect the presence of these amyloid plaques (and which are several orders of
magnitude less expensive than a PET scan) as well as genetic tests which detect
the presence of the APOE4 alleles which increase the risk of developing
Alzheimer’s. All of these advances have come because of dementia research and
related clinical trials.
It’s because of these exposures, and
particularly the history of dementia in my father and grandmother, that I
decided to get involved in dementia research. There are actually several forms
of dementia, but the most common to people is Alzheimer’s which represents
about 60-70% of the total. Others include Lewy Body Dementia (which is what
actor Robin Williams was diagnosed with and why he committed suicide) and
Frontotemporal Dementia (which is what actor Bruce Willis has been diagnosed
with). I initially went through the Alzheimer’s Association which I had been
supporting financially for a while. Through them I got a list of various
studies which I could enroll in.
My Studies
I’m currently involved in several
Alzheimer’s studies. I wrote about them a few years ago (see here), but I’ll repeat
them here in this context.
Aging Brain Cohort (ABC)
I initially enrolled in just one study
called the Aging Brain Cohort. It tracks individuals over a long period of time
to look at how their memory changes as they age, if it appears that they are
getting dementia, etc. There is no requirement that an individual has to have
dementia, but they do require that you have a “study partner” with whom they
can check to get an accurate assessment of how you are performing. There are
several components to the study. Most important is an annual in-person
assessment where you take a number of mental tests (the same ones each year).
These evaluate your various mental abilities such as copying a figure,
connecting small circles in alphabetical order, listing as many words as you
can think of that start with a particular letter, listening to and repeating
back an increasingly long series of digits (then doing the same in reverse
order), giving the name of an object when shown its picture, listening to a
short story then repeating it back and seeing how many key points you can
remember. It’s a pretty intense hour+ of testing.
They also ask your study partner about
some recent events in your life and then see if you can give them key facts
about it. There are also physical components to the testing – walking to the
end of the hall and back (to observe your gait), following a finger with your
eyes (kind of like the sobriety test they give to check for a DUI), closing
your eyes and checking to see if you can hear a tuning fork and how faint it
gets before you can’t hear it any more, checking to see if the strength in both
arms/legs is similar, etc. They also ask for a yearly blood sample. Finally,
every two years they give you a brain MRI. I’ve now been in the ABC study for
four years and just recently had my second MRI as well as this year’s round of
testing.
[Sample MRI scan – not mine]
Medial-Temporal Lobe (MTL) Study
The purpose of the MTL study is to
better understand age-related changes in brain structure and function and to
compare this with the earliest changes of Alzheimer’s disease. The MTL is part
of the brain thought to be related to memory processes and is vulnerable to
aging and Alzheimer’s. This is a three-year study and this year was my final (I
think) session. In order to minimize my trips to Philadelphia, I had scheduled
it back-to-back with my annual ABC study.
The tests in this study are quite
different that the ones from the other two studies as they are looking at the
impact in other parts of the brain. There were several different tests. For
example, one was that the coordinator would name a category, such as types of
insects, or types of vegetables, or types of alcohol, and you would have to
name five things that fit into that category while he kept track of how long it
took to give your responses. The upper limit is one minute per category, and I
responded generally within 6-7 seconds. Another test was where the coordinator
would name two objects and ask you which had the more positive association. So,
if the two objects were “banana” and “hurricane”, most people would answer
“banana”. But there is no real right/wrong so things like “whiskey” have a
negative association with me since I don’t drink, but for others it might be a
positive association.
Some tests required you to use a
laptop, for example they would show you a small thumbnail picture for three
seconds and you would have to hit one key if you felt it was something
associated with “outdoors” and another key if you felt it was something associated
with “indoors.” So, roller blades would be outdoors, but a book would be
indoors. I lost track of how many pictures there were – somewhere between 50
and 100. What they didn’t tell you was that you needed to be able to remember
them. The next test was another group of 50-100 pictures and you had three
seconds to indicate whether you had seen that picture before, whether you had
not, or whether it was “similar” to what you had seen before. For “similar”
there were things like the initial group of pictures had a black-and-white
patterned dress, the in the second group there was another black-and-white
dress but with a different pattern.
The MTL study was allocated 1.5 hours,
but because of my speed on many of the tests, we were done in a little over an
hour. But it was a pretty intense hour!
APT
Webstudy
The
Alzheimer Prevention Trials (APT) Webstudy is designed to identify people who
may have an increased risk for developing Alzheimer’s disease, using the latest
technology to monitor their cognitive performance through regular online memory
testing. I’ve been involved in this study for almost four years. This is a
totally online study and I go through the testing every four months. Like the
ABC study, it is a long-term study that’s looking at memory changes over many
years. I’ll not go into the details, but you can look at them in the above
reference.
AHEAD Study
About a
year ago I signed up for a drug-based study. The drug had been recently shown
to slow the progression of Alzheimer’s and they wanted to see if it was given
to people who did not yet have any symptoms that it might prevent the disease
from even starting to show symptoms. Making the step from simple memory testing
to getting drug infusions was a significant decision. However, as I related here, while I met all the other qualification steps, when I had a
PET scan they found that I had no amyloid plaques in my brain, so I did not
qualify. I also found that I had two copies of the APOE3 allele so I did not
have any increased risk of developing Alzheimer’s in the future.
What’s
Next?
While I now know that I am not likely to
develop Alzheimer’s, that does not mean that I will end my involvement in this
area. I’ll continue the ABC, MTL, and Web-APT studies. I’ve also started
looking at other similar studies where my participation may help the
advancement of cures for these types of diseases. So far, I have added two new
studies to my portfolio. One is called MindCrowd and, somewhat like the ABC
study, is looking to track large numbers of people over a long period of time
to help understand the brain aging process. They are looking for one million
people, world-wide, to enroll in this study. The second one I have signed up
for is called PPMI (Parkinson’s Progressive Marker Initiative). This study is
working with thousands of participants – both those with diagnosed Parkinson’s
and those over 60 who may be at risk for it.
Also, having made the decision that
drug-based studies are something I’m willing to get involved in, I have let it
be known that I will consider other such studies – not for Alzheimer’s for
which I’m not likely to ever have, but for other areas where I might qualify.
I’ll detail what’s happening in another blog about my heart/blood issues.
Medical research is somewhat fascinating.
When most people hear that term, they avoid any involvement. But I have found
the opposite. And for such a not-well-understood area like dementia, even if I
do not personally benefit from it, if my participation can help others in the
future, then I’m willing to participate. How about you? If you’re interested,
let me know!
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