"NO BIG
DEAL - YOU HAVE THE FLU"
"OH YEAH?" (OR)
THE RARE DISEASE WITH THE LONG NAME
Guillain-Barre Syndrome...
On June 28, 1997, my god-daughter,
Courtney, had finished
her shift at Hamilton General Hospital. She is a
Registered Respiratory Therapist and was staying with
mutual friends in Waterdown, Ontario, because of the
driving distance from her parents' home in
Niagara-on-the-Lake.
My wife and I happened to be visiting when she arrived
after work looking fatigued, pale, with no energy. Her
symptoms worsened, she went to a nearby walk-in medical
clinic and was told she had the flu (the symptoms are
similar). A second medical opinion the following day the
hospital reached the same conclusion and she was told to
go home and rest.
Her father brought her home. She gradually weakened and
finally she actually self-diagnosed, she insisted that
she had acquired "Guillain-Barre Syndrome", a
debilitating illness that strikes only one in two-hundred
thousand.
By the end of the third day she lapsed into partial
paralysis and was rushed by ambulance to Hamilton General
Hospital and by the end of that day she was totally
paralyzed, able to breathe only with mechanical support
of a ventilator. The syndrome was finally recognized and
appropriate care began. Initially, the medical staff was
facing something virtually unknown. Specialists were
brought in.
Before Courtney's personal progress is discussed any
further, a little technical information gleaned from the
Internet may help in understanding this rare condition.
So rare that it is often misdiagnosed sometimes
resulting in death or permanent disabilities
recovery...simply because treatment was
not instigated soon enough.
...the onset of paralysis is usually preceded by a
general feeling of weakness, pins and needles, and
cramps. Alternatively, the syndrome may begin suddenly
and end very unexpectantly. In all cases, the weakness
spreads rapidly from the lower
to the upper parts of the
body with a tendency to become generalized. The severity
of the case is usually indicated by length of time to
maximum illness and at that point, it reverses and the
healing process hopefully begins.
...maximum intensity can vary from a few days up to
fifteen days in severe cases. When the paralysis reaches
its peak, the danger of death by asphyxia is always
imminent but in most cases, death
is avoided by professional intervention, e.g., by a
Registered Respiratory Therapist, ironically, such as our
subject patient, Courtney.
...there are no two cases alike. Fortunately, the
recovery rate is 95% but the degree of recovery varies
from case to case. Some patients recover totally within
one year, others are left permanently unable to walk or
to manipulate limbs, fingers. G-B-S can affect anyone,
young or old, male or female. It is not hereditary and it
is not contagious.
Although G-B-S improves spontaneously, other factors can
assist in recovery:
-good nursing and medical care.
-physiotherapy (most important) and hydrotherapy (in
pool).
-plasmapheresis (I don't understand this either but it
involves the exchange of blood
plasma carried out in the first few days of
treatment).
-counselling, but most important is the support of family
and friends.
During my involvement and study of G-B-S, it is woefully
obvious that more research is necessary to allow doctors
to better diagnose and treat victims of this uncommon
illness.
Back to the case at hand....my god-daughter is currently
recovering well and is now allowed to go home on
weekends. She is in an electric wheelchair and has
regained a minor amount of movement in her legs, fingers,
bodily functions and speech...a long way from the total
paralysis when the only operative function was slight eye
movement which she used to communicate. She now eats
normal foods and says that even broccoli is better than
that "green stuff" dripped into her stomach via
tube.
Most important in her recovery, in my opinion, is her
fabulous sense of humour which she somehow has
maintained....here are a few examples:
-drag racing in her electric wheelchair when the only
movement she had was two fingers which were used to
operate the controls. The hospital staff was impressed
with her accomplishment but frowned on this dangerous
activity, especially when her father took his ride.
-an e-mail network of her friends and family has been
established on the Internet and
she sends and receives (via her father) messages around
the world with an emphasis on humourous stories.
-through the Internet and now in person, Courtney
participates in support for other G-B
patients with encouragement (and humour of course).
-at a recent gathering, she demonstrated a newly acquired
movement and much to everyone's amazement and delight,
kicked her father in the shin (with love). A seemingly
unimportant act to mention here but a very large
accomplishment.
Her doctors believe that a patient's fitness level prior
to this illness is a key element in eventual recovery. In
our case, she is an outstanding athlete. During her
university days, she was a member of the University of
Victoria rowing team and recently was playing competitive
soccer in three leagues.
Her determined spirit is evidenced by her recent
discussion with a hospital counselor, as related to me by
her father:
Counselor "and so Courtney, because of G-B-S, what
will your plans be if you cannot
resume your job as a Respiratory Therapist?"
Courtney "no, no. BECAUSE of G-B-S, I will become a
better Respiratory Therapist."
An interesting site on the Internet is dedicated to
case histories, comments, and poetry submitted by
former and present G-B-S patients. I quote an excert
from one of those poems:
If I am granted my every wish, high on my list
will be to fish.
If suddenly I find my lungs are strong, to show
my happiness
I'll burst into song.
If a final wish is given from above, I'll wish for the
chance, my family to hug.
If God in His mercy answers my prayers.
A lifetime of happiness will all be theirs...
The poem continues but the message of hope is one shared
by all G-B'ers.. Recovery continues!! |