"I knew it was vital to get through to him, and make him understand there was hope"
For the benefit of those involved in the treatment and rehabilitation of LIS, here is the foreword to the book provided by Pete's Neurologist - Clinical Professor David Blacker, MBBS, RACP.
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| Professor David Blacker |
"I’ve been involved with the care of stroke patients for more than 20
years and have witnessed the full range of human emotions, tragedies and
triumphs, experienced by stroke survivors and their loved ones. I have
frequently shared in the grief, frustration and pain, and still find the task
of delivering bad news distressing. There are however, some shining moments of
glorious and spectacular recovery; Peter’s story is one of them. So often the
media describes a patient’s recovery as “against all odds”, with the doctors
pessimistically quoted as saying, “You’ll never walk again,” or “You will need
to go to a nursing home.” Whilst some reports of Peter’s story have included
such phrases, they were never from me; in fact, my interactions with Peter have
always been the exact opposite.
Peter was admitted to the ward in mid-2011. I hadn’t been involved
directly with his initial care, but was soon aware of his circumstances and
what had happened. I had long been a proponent of mechanical thrombectomy for
severe stroke due to clotting within the large arteries of the brain, and have
been involved with this therapy since the mid-1990s. It took until 2015 for
this approach to be finally proven as a technique, so attempts to use it prior
to that date were certainly regarded as ‘cutting edge’, or possible a
little ‘cowboyish’. In situations like Peter’s, though, the decision-making is
relatively simple - a very fit, active young patient facing death or severe
disability. In my view, there was no hesitation in trying everything.
Other clinicians might have been more conservative, particularly prior to the
publication of the 2015 data, for fear of leaving Peter alive and facing
devastating disability. In any case, Peter was transferred from a peripheral hospital
in the middle of the night, to the major tertiary hospital, and one of
interventional neuroradiology fellows, in conjunction with my colleague, made
some urgent decisions, and proceeded to mechanically extract a lengthy clot
from Peter’s basilar artery during the early hours of the morning.
In this book, Peter describes in graphic detail the horror of awakening
in the intensive care unit, and the gradual realization of his situation;
the ‘locked-in syndrome’ (LIS). In summary, individuals with LIS find
their fully active mind, trapped in a completely paralysed body, usually
due to a stroke affecting the middle section of the brainstem; a critical
section of neural tissue connecting the brain to the upper spinal
cord. Typically, all four limbs are paralysed, and the nerves
controlling speech, swallowing and breathing are affected. The patient is
unable to speak, and observers may assume they are comatose and not aware of
the surrounding environment. Communication can sometimes be established through
eye-blinking, and other subtle facial movements. One of the most famous
cases is described in the book, and movie, “The Diving Bell and
the Butterfly”.
Shortly after he was transferred to the neurology ward, I was formally
asked to consult on his case, particularly to assess his suitability for
transfer to the neurology ward of the rehabilitation hospital, where I also
worked. Despite seeing hundreds of stroke patients each year, I had only
been involved with four cases of locked-in syndrome (who had survived) due to
stroke before I met Peter; but this was more than most of my colleagues. Two
early patients remain highly dependent, one in a nursing home, the other with
full time family care at home. Another patient had been spectacularly saved by
thrombectomy more than 24 hours after symptom onset, and progressed through
rehabilitation quite rapidly. I presented his case at a meeting to highlight
what could be done. I contrasted his outcome with another patient who didn’t do
so well initially, but ultimately underwent a long rehabilitation process with
some gains, and returned home, and resumed a productive life. She came tantalisingly close to walking
but, due to a number of issues, couldn’t quite get back on her feet.
Around the time that Peter came in, I was feeling particularly enthusiastic
about neuroplasticity and rehabilitation. The famous book written by
Norman Doige, ‘The Brain That Changes Itself’, was
receiving a lot of popular press, and I’d just heard him give a public lecture,
affirming many of the basic principles that I’d been working with for years.
Although it wasn’t really new knowledge for me, it was inspiring and exciting
for the public and patients to have some hope provided. In the book, Doige describes the
recovery process of a doctor’s father who suffered a severe brainstem stroke. That inspirational description included a phase where the patient crawled like
an infant in the process of re-learning to walk. I felt “fired up’ by
these descriptions and eager to apply this the next time I had a suitable
patient with LIS.
When I carefully reviewed the details of Peter’s case, I was quietly
optimistic. His MRI showed that the damage to a critical portion of the
brainstem known as the pons was incomplete. An important few millimeters of
tissue known as the corticospinal tract seemed to be relatively intact. This
region is the ‘wiring’ which transmits electrical signals from the
brain to the body. It’s incredible what difference a few millimeters of damage,
one way or the other, can make. What I saw on the scan gave me hope, but
what I saw in Peter when I met and examined him gave me even more hope. I saw a
fit, relatively young man who was determined. I knew it was vital to get
through to him, and make him understand there was hope, and I tried to do this
when I met him. I was surprised to later read in his first book, how great the
impact of my decision to get him into the rehabilitation hospital was; from my
side of the bed there was no doubt that was the only thing to do. It’s easy to
forget how the things doctors say and do really stand out in the minds of
patients. I had to be realistic though, and warn him there was plenty of work
to do, and that it would be a long road.
So Peter’s rehabilitation journey began. Typically I’d visit the
rehabilitation hospital once or twice a week and attend a detailed meeting
where the nurses and the therapy staff would give their reports on patients’
progress. The highlight for me was seeing patients in normal clothes in
the gymnasium working with the physiotherapists, rather than being stuck in a
bed wearing pyjamas. I think that environment is crucial because it can be very inspiring
and motivating, as well as tough. Patients get to see others in action as well,
at different stages in rehabilitation, and with different levels of age and
disability. Sometimes a sense of friendly competition arises; other times,
disappointment can be the result. The team clinical psychologist has a crucial
role to help guide patients and their relatives through the “bumps in the
road”, that the long journey of rehabilitation must take when a patient has
profound neurological injury like the LIS. Peter certainly
had ‘bumps’ to face, including at least two frightening episodes of
pneumonia. But Peter overcame the challenges to walk out of ‘Shents’. The video of that
still makes me cry!
There was much more to follow for Peter after discharge from inpatient
rehabilitation; in some ways the intensity of his efforts accelerated. Around
this time I was quite enthusiastic about long distance running, and a member of
the West Australian Marathon Club. Another member named Daryl Howel has cerebral
palsy, and has famously competed in marathons and ultra-marathons around the
world. This made me wonder what Peter could do, and somewhere along the
line I challenged him to join me in the Perth City to Surf, initially planning
to participate in the 4km walk. Peter’s determination of course
quickly changed the target to the full 12km event. It was a wet and cold day
when Peter and I completed the course, which was being deconstructed as we
slowly covered the distance, but a glorious achievement and milestone for
Peter. A couple of years later we went even further, walking 16km in the
John Hughes Big Walk. On a beautiful clear day I think Peter could have walked
forever!
There are many other things that Peter has done including his generous
support and help for other patients, and there are many more great things in
his future. Peter’s inspiration also helps me show up for work every day.
Stroke medicine is demanding. Most days I interact with patients and families
who are going through the worst thing that has ever happened to them. The
stress, grief and shock associated with stroke is enormous, and I admit that
despite all my years of working in the field it still sometimes overwhelms me
and gets me down. When it does though, there is no better way for me to
find inspiration than to think of Peter Coghlan."
Professor David
Blacker
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