I was recently asked by a friend how Robert’s pulmonary
issues are connected to his seizures.
I thought this was a terrific question and one I have been
trying to understand ever since his pneumonias started showing up a couple of
years ago.
But first, I had to sing “The knee bone is connected to the thigh bone, the thigh bone is
connected to the hip bone, the hip bone is connected to . . .” You get the
idea.
I couldn’t help myself.
That is the million dollar question. How are the seizures
related to his proclivity to develop pneumonia at the drop of a hat?
Robert’s pneumonias have always been classified as
aspiration pneumonia. Sometimes, the pneumonia doesn’t even show up on the
x-ray which confuses the heck out of the ER personnel. However, a doctor once
told me that it is not always possible to diagnose pneumonia by x-ray – it is
diagnosed through symptoms.
Robert has the symptoms every time and we are well aware of those
symptoms (cough, fever, high pulse, low blood pressure, reduced mobility and “brain
fog”). In Robert’s case, sepsis is
usually an unwelcome companion with his pneumonia (and no matter how quickly we
recognize the pneumonia, the sepsis sneaks in there).
The pieces are starting to come together with each new
specialist Robert sees. A year ago
during one of the hospitalizations, Robert saw an ENT and was diagnosed with dysphagia
(a swallowing disorder) which was thought to be causing his aspiration
pneumonias.
Great! He was put on a modified diet (called either “chopped”
or “mechanical soft”) and thickener was added to all of his drinks.
Two months later he was hospitalized again with pneumonia so
this wasn’t the only piece of the puzzle.
Earlier this year, Robert’s pulmonary doctor did a couple of
scans of Robert’s lungs and concluded that his lung muscles were weak and there
really wasn’t much more to do other than try to manage the symptoms before
Robert needed hospitalization. He explained that the lung muscles were
weakening much like Robert’s leg muscles and other muscles were weakening and
it would just be a matter of time before he couldn’t recover from one of his
pneumonias.
I appreciated his frankness and the explanation of what was
happening. Since then, Robert developed his typical pneumonia symptoms five
times (that’s just this year) and the pulmonary doctor put him on antibiotics each
time and we were able to keep him home while he recovered.
In June, however, Robert’s mobility was really taking a
hit. His leg muscles were getting
exceptionally weak. He could no longer use a walker and we had to use the
wheelchair 100% of the time.
I still didn’t know what was causing this muscle weakness
and the decline. The decline seemed to be so rapid that it was head-spinning.
It was all my husband and I could do to try to keep up with Robert’s increasing
needs.
Finally, the neurologist told us to go to the hospital. They weren’t sure what was going on either
but suspected a neck compression on the nerve in his spinal column (which would
really suck). He needed to be in the hospital to investigate further.
We were fortunate that the neurologist on staff during
Robert’s hospital stay was a specialist in movement disorders. She was easy to talk to but exceptionally brilliant.
Robert couldn’t have been in better hands.
She determined that Robert did have a neck compression but
it wasn’t severe enough to cause him to lose his mobility. Instead, she
diagnosed him with Cumulative
Traumatic Encephameylopathy and Parkinsonism and started him on a new
medication (Sinemet) which helps manage the symptoms. Combined with physical
therapy, Robert’s mobility returned to a level I hadn’t seen in months. It was such a relief.
I had a question about Parkinsonism which the neurologist
answered at Robert’s most recent neurology appointment: it is different than Parkinson’s
disease. Parkinsonism is just the symptoms of Parkinson’s disease and not the
disease itself. Parkinsonism can cause muscle
weakness (including the lungs), movement disorder (Robert’s muscles were weak
but they were rigid), tremors and swallow difficulties.
Things were starting to make sense.
From what I understand from the neurologist, the CTEM and
Parkinsonism are caused from brain trauma Robert sustained due to a lifetime of
uncontrolled seizures, two brain surgeries and dozens of concussions (caused
from falling during a seizure).
This does make more and more sense to me. I think of Muhammad Ali who developed
Parkinson’s syndrome due to being bashed in the head multiple times during his
boxing career.
The brain can only take so much trauma.
Robert sees many specialists (three neurologists, a
pulmonary specialist and not just an ENT but an Otolaryngologist for his
swallow disorder) - and don’t ask me to pronounce that type of doctor!
It seems recommendations for treatment and piecing together
the puzzle of his illnesses is pretty fluid. Prescriptions change, medication dosage
changes, even his diet recommendations change (Robert no longer needs thickener
as the doctor thinks that makes swallowing more difficult for him).
Richard and I just manage the best we can and help Robert
understand what is going on with him as much as we can.
We know that Robert’s body doesn't handle illness as well as
the rest of us because of the compromised brain function which ends up
affecting his mobility and creating sort of a "brain fog." He forgets
words, has trouble telling us what he wants to say and has a weaker grip on his
pen so has trouble with his word search books. He gets drowsy and slow and the
ability to walk becomes a luxury until he recovers. For the same reason, it
also takes him a lot longer to recover from any sort of illness.
He is sick again now and on antibiotics. He has trouble
walking, is having breathing difficulties and has his brain fog. I am
monitoring his vitals closely in case there is an indication he needs to be
hospitalized.
That's my understanding of the inter-related workings of his
issues.
Epilepsy with uncontrolled seizures to brain trauma to Parkinsonism and CTEM to pulmonary problems, dysphagia and mobility issues.
I may not have all the pieces or understand all of what is happening
but the idea that everything that is going on is related and is really
ultimately caused by his uncontrolled seizures renews my advocacy to spread
awareness about epilepsy.
There is not a lot of research out there about the effects
of epilepsy on adults with uncontrolled seizures. However, I don’t need to learn what happens
by reading about it. We’re living it and
I would love nothing more than to stop epilepsy in its tracks.
(Obviously, not everyone will have the same experience as
Robert so it would be nice to have more research about the effects of
uncontrolled seizures.)
Please help me spread awareness about epilepsy and, if you’re
so inclined, check out a few epilepsy organizations that do terrific work
researching epilepsy and educating people about it:
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