The connection between blows to the head (even those not resulting in a
concussion) and Chronic Traumatic Encephalopathy (CTE) is clear thanks to the
persistence, innovation and research of Dr. Bennet Omalu, a forensic
pathologist and the doctor who wrote the book, “Play Hard, Die Young: Football
Dementia, Depression and Death.”
CTE is quite the hot topic right now because of the number of high
profile NFL players confirmed to have CTE (including Junior Seau) and the NFL finally
recognizing the dangers of repeated concussions. It doesn’t hurt to have Will
Smith releasing a new movie, “Concussion”,
which is based on Dr. Omalu’s work.
What exactly is CTE?
The UC Davis Medical Center (a university at which Dr. Omalu is part of
the faculty) describes CTE as a “progressive, degenerative disease that results
from repetitive brain trauma that can only be definitively diagnosed after
death.” CTE cannot be confirmed until a post-mortem
brain analysis checks for tau proteins but brain imaging while the person is
alive can be reviewed for “markers” of the tau protein. Interestingly, tau protein
is “an abnormal protein common in the brains of elderly Alzheimer’s patients.”
The CTE Center at Boston University describes the symptoms of CTE as including
“memory loss, confusion, impaired judgment, impulse control problems, aggression,
depression, anxiety, suicidality, parkinsonism and, eventually, progressive
dementia.”
Robert has (or has had) every
single one of those symptoms.
I am convinced there is a link
between CTE and epilepsy.
I am no scientist. Heck, I couldn’t even take biology because I refused
to dissect a frog. But I am pretty good at observation. And research. And
taking notes. And being pretty darn persistent.
I know what Robert was like as a child. His motor and verbal skills
were perfectly normal. He had trouble in school but mainly because he missed
quite a bit of it because of doctor appointments and medications and seizures
and he also was diagnosed with ADD (probably ADHD, now that I think about it).
Robert grew up on a variety of anti-seizure medications and did not
wear a helmet until he was well into his twenties and continued to have
uncontrolled seizures and falls.
There were a lot of head injuries and concussions. He had numerous
falls resulting in all kinds of injuries (including a near-drowning) and more
head injuries than any of us could count.
Robert’s head injuries alone could be the reason for the symptoms he
now has. The depression and attempted
suicide Robert experienced as a teenager could have been the result of
medications or epilepsy. Or was it CTE?
More than a year ago, Robert was hospitalized for a few weeks because
he could not use his legs. At the time, he was using a walker and we had to
make the switch to a wheelchair. He quickly lost the ability to even transfer
from the wheelchair to the bed or to another seat. He was sleeping constantly. He
was very, very sick and his neurologist thought he might have “cervical disk
disease with myelopathy.” A CT scan showed he does have that but while in the hospital, the
neurologist on rotation also diagnosed him with Parkinsonism. I asked about CTE
and she agreed with me about seeing the symptoms.
Let’s include epilepsy in the
discussion about CTE.
What if the falls and head injuries are not the only contributing
factor to CTE?
What if the uncontrolled seizures are causing CTE?
What if the depression associated with epilepsy is actually because of
CTE?
What if epilepsy itself is a
cause of CTE?
When I broached the subject with Robert’s Neuro Nurse Practitioner, she
thought these were great questions. The neurologist, probably playing devil’s
advocate, asked something to the effect of what good it would do to know
whether epilepsy can result in CTE.
My answer: PLENTY!!!
If there is a connection between
epilepsy and CTE then the research can move in a whole new direction, possibly
finding new medications and treatments for epilepsy.
If that is not reason enough, then consider:
If there is a connection between epilepsy and CTE, parents may be more
inclined to make their kids wear a helmet. Our parents did not make Robert wear
a helmet because he didn’t like it – it made him look different. (Keep in mind,
this was before kids even wore helmets to wear a bike or before motorcycle
helmets were required.)
If there is a connection . . . helmet technology would have even more
reason to improve! Let’s make more improved helmets to better protect those
precious brains during a fall.
If there is a connection . . . there is even more reason to strive for
a cure. To reach 100% seizure control. If uncontrolled seizures can take Robert
from a lively, outgoing, mobile rascal of a kid to a depressed teenager to a 50
year old who cannot remember what he did earlier in the day, then it can happen
to others with uncontrolled seizures too.
If there is a connection . . . the availability of caregiver resources
and respite will need to rise to the occasion. If we, as caregivers, are
managing the health and well-being of a person with uncontrolled epilepsy and
know that in the future there will be more and more care needed, then we have
to be prepared. I would have loved to have known that Robert’s steep decline
was just ahead as I began to care for him. Not because I would have refused to
take on the job but because I would then know what I was in for and could plan
for it.
If there is a connection . . . the availability of social services will
need to increase. Day Programs and social service agencies handling an
increasingly needy population will be understaffed and underfunded if we do not
recognize the decline in people with uncontrolled epilepsy. These agencies are
already understaffed and underfunded but gathering data about the impending
increased needs of consumers will allow these agencies to plan for it.
If there is a connection . . . research will have to improve and become
better funded. There is already an enormous burden on the healthcare system to
care for the chronically ill, disabled and elderly. Robert’s care is paid for
by Medicare and Medi-Cal – I know the extraordinary costs associated with his
care and know the government (and, frankly, the people) are paying for it.
Multiply his costs by a million (a third of those with epilepsy do not have
seizure control) and the numbers are . . . , well, ridiculous. (I am not a mathematician
either.)
I am not trying to alarm anyone who has uncontrolled seizures or who is
caring for someone with uncontrolled seizures.
I understand no one wants to talk about the long-term effects of
uncontrolled epilepsy. We want to be in the category of those with epilepsy
living long, productive lives. The long-term effects can be scary as hell.
However, just as many people don’t realize SUDEP is a very real risk from
uncontrolled seizures, a possible link between epilepsy and CTE needs to be
discussed and researched.
Let’s at least include epilepsy in the discussion of CTE. Let’s do some
research to see where this takes us.
Let’s give families another reason to find a cure for epilepsy and to
get the support and help they need in treating epilepsy.
Let’s not be alarmed – let’s do something
about it.
