MY YEAR WITH GUILLAIN BARRE SYNDROME (aka GBS)
By Jackie Barber
I had just returned from a wonderful river
cruise in Germany. Feeling great, I took my normal 2 mile walk that Wednesday
in May, 2011. That night I got up about 2 a.m. to go to the bathroom and
stumbled a little. Thinking I was just sleepy, I didn’t think anything about it
until I woke up about 5:00 and couldn’t walk! My husband Joe and my best friend,
Shirley, took me to the emergency room of our local hospital and the rest is
history.
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| Jackie Barber with her friend Shirley Woods in happier days traveling in Turkey |
By the next day, it was obvious that the
paralysis in my feet was spreading up my legs and had moved to my hands and
arms as well. In three days, I couldn’t raise my head or turn over and
everything tasted like metal. The neurologist had run lots of tests but had not
isolated a cause. I happened to mention that I had had a rather severe bout
with food poisoning on my trip to Germany and his eyes lit up. He ordered tests
for Guillain Barre Syndrome and there it was. They immediately ran two
treatments of immunoglobulin drips into my arm and the progress of the GBS
slowed. I could taste again.
I was then moved to another hospital that has
a wonderful therapy floor. My general practitioner was not happy that I wasn’t
getting better and she ordered seven treatments of plasmapheresis. That stopped
it cold and I began therapy. They explained to me that GBS is an auto-immune
disease in which the body’s immune system attacks the body. It is triggered by
bacterial or viral infections in which the immune system just won’t quit
attacking the invader. The myelin sheath around the nerves is affected and the
nerve impulses are not able to travel from the brain all the way to the end of
the “electrical cord.” Thus there is tingling, pain, and finally paralysis.
They also checked my breathing three or four times a day as it can affect the
lungs and in the past,especially when the Swine flu vaccine was being
developed, many people ended up on respirators or in iron lungs.
I was administered massive doses of vitamins
and narcotics for the pain. My hallucinations were quite adventurous! To teach
me to sit up I was placed in a Hoya. That is basically a canvas sling that was
put around my body and then hoisted into the air. I would swing merrily out of
bed and be deposited into a chair for a short time. What fun that was! To
stand, I was strapped onto a tilt-table which was raised to a standing position
very slowly while my blood pressure was checked as I changed positions. I loved
finally being able to look out a window! I had four to five sessions a day of
physical and occupational therapy. Joe and my friend, Shirley, came to feed me
every meal. Shirley cried when I first could hold a spoon in my hand and feed
myself.
Five weeks later I could sit up in a
wheelchair, walk 25 yards with a walker and a belt held by a therapist and
could basically dress myself. My therapists, family and friends were
wonderfully helpful and eight weeks later I was sent home to the care of a
wonderful daughter. My hospital bed was in the living room and the bathing
bench was a gift from heaven. After 2 months I got to take a real shower!!! A
home health therapist came three times a week to move those legs and teach us
all exercises that everyone in the family helped me do. We also tried
acupuncture, hyperbaric chamber treatment and electrical stimulation. These
treatments were certainly not harmful but were inconclusive.
I then began outpatient therapy three times a
week at the hospital and again was impressed with the therapists. I called one
of them “Miss Push The Envelope” and another “Drill Sergeant.” Both were meant
as compliments as they challenged me constantly to keep working hard and strive
just a little more. I walked with the help of braces on my legs called AFOs and
slept with a boot to prevent foot drop and a wrist brace to mitigate the pain
in my hands. My major days were when I could use my walker instead of the
wheelchair, use a four footed cane, walk without a belt, rise from a chair, get
up off the floor, climb short stairs and finally walk almost exclusively with a
regular cane. Oh yes, putting on my bra and fastening a necklace were causes
for celebration too. I exercise every morning and walk every day.
It has now been a whole year since that
Thursday morning. I walk at least a mile a day. I can prepare a simple meal. I
have taken three flights to visit my children and am planning more. My feet are
still partially paralyzed but still changing. My hands still tingle but I can
do what I need to–even sew on a button.
Most important though has been the many
lessons I have learned. My attitude is to take one day at a time. Every day I
can choose to be hopeful and trusting or I can say “poor me.” I have seen both
attitudes in the many people I have met in therapy. I have been inspired by
those who have chosen to remain positive and cheerful and of course, hard
working. It became a minute by minute choice and I choose to work as hard as I
can and to try to cheer up other patients. I know in my deep faith and trusting
that there is some purpose for this, some lesson to be learned. My doctor says
that my progress has been “astonishing.” Several of my neighbors have started
regular exercise programs and lots of people have said such things as “You’re a
true inspiration”, even “You give us hope.” I have been amazed at the kindness
and helpfulness of strangers and will be eternally grateful to my husband, my
family and Shirley.
What I tell myself may help others: Be positive,
be determined and know that what you thought would take 10 steps will take
10,000 steps. It’s like being a snail who passes a green leaf, just keeps
moving and all of a sudden there is a red leaf. Slow is ok. And don’t be afraid
to ask for help. Work hard!!!
ABOUT
THE AUTHOR:
Jackie Barber, Ed.D., Retired High School
Principal and College Professor of Education
Jackie Barber holds an Ed.D. in Education.
After a successful career as a high school teacher and principal of Fort
Lauderdale High School in Ft. Lauderdale, Florida she served as an adjunct
Professor of Education at Florida Atlantic University for over ten years.
In that position Dr. Barber’s favorite class
was a methods class in which she taught aspiring teachers how to teach.
She has also served in leadership positions in
several civic and community organizations, including the American Red Cross.
She was a member of the National Red Cross Disaster Team that spent several
months in New York City after 9/11. She also worked with the team after
Hurricane Katrina.
She has a passion for travel and has visited
over 100 countries.
Jackie wrote and contributed to
HelpingYouCare® her inspiring story (above) of how she overcame and survived
the dreaded auto-immune disorder, Guillain Barre Syndrome, which had suddenly
left her body paralyzed from neck to toe. Jackie shares how she has coped with
this tragedy and managed, through determination and months of grueling physical
therapy, gradually to regain use of her limbs and reach recovery.
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