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KAY'S STORY: TRIUMPH OVER MYASTHENIA GRAVIS
Kay shares with us how she
overcame and defeated the poor concentration and poor memory that occurs
with myasthenia gravis.
A HAPPY MOMENT WITH
KAY and HER SON
One of the scariest moments of my life
was when I forgot my own son’s name. I knew that I knew him and that he
was my son, but I just could not get his name out. I felt as though I
were in a fog; it was like a heavy cloud cast over my brain dampening my
thoughts and my mood...
At that time my mood was
very dark. I was depressed, frustrated and despondent. Many times Ifelt that there was no hope.
Earlier that year - in December 2003 - I was diagnosed with Myasthenia
(MG). Its onset was quick. One day I was a happy working
mother, active in my community with a demanding and satisfying position
as an elementary school principal.
enjoyed working out, jogging, reading, and going out for dinner with my
friends. But, within two days I could barely walk; every breath was a
struggle. I couldn’t read because my vision had become so blurred; I
couldn’t eat because I would choke every time I tried to swallow.
went to the hospital and stayed for a month – the first time. I would
be in and out several times over the next six months or so, but this
first was the most difficult because I had no idea what was happening to
me. After many tests I find out. My doctor told me that I had
Myasthenia Gravis, a rare neuro-muscular auto immune disorder, he said,
with symptoms similar to MS: muscle weakness, fatigue, and blurred
vision. I would be severely debilitated, and considering the severity
of my symptoms, my life would be very different from what it had been
before. Because MG is aggravated by stress, I would be unable to work
full time and not at all until my condition stabilized. He also told me
that I would need assistance with normal day to day activities like
cooking and cleaning. Driving was out of the question, because I
couldn’t even see well enough to read, let alone drive a car.
While in the hospital I was prescribed high doses of prednisone. The
drug Mestinon was prescribed for the extreme muscular weakness I had. I
was never really one for taking medications, so it seemed a lot to me.
These drugs helped the symptoms but had challenging side effects. And
the fog over my brain became thicker with each passing day. I also
started a therapy of plasmapheresis and
intravenous immunoglobulin (IVIG). My doctor told me that these
two therapies help remove and reduce the abnormal antibodies that attack
nerves and cause muscular weakness. These, too, had their side effects,
and often left me feeling very tired after I had taken them. I had
surgery to have my thymus gland and a tumor attached to it removed.
There were days when I was so weak that I could not lift my own head or
put lotion on my own hands.
During this time my solace was my family and my friends, without whom I
don’t know whether or not I would have made it out of the hospital. My
son and my friends were with me almost the whole time. While I was in
intensive care on a respirator, it was a comfort to have them there with
me even just to sit quietly and keep me company. In a way this made me
sad, because there were many other patients in the ICU who did not have
the support that I had, and seemed to face their illnesses alone.
autoimmune disorder affecting the nerves and
causing muscle weakness.
vision, difficulty swallowing, fatigue, depression,
poor concentration, & general weakness are symptoms.
Conventional treatments consist of treatment with
tumours may play a role.
the hospital I did - four and a half weeks later doing somewhat
better physically, but with my brain still in a fog which was
getting thicker by the day. As my son wheeled me out to our
waiting car, I vowed that I would overcome this disease.
would work again, I would return to school to get my doctorate,
and I would enjoy jogging, walking my dog, reading, going to
church, talking with my son over dinner, and all the other
simple, everyday things that made my life enjoyable before I
During the first three months, I was in and out of the hospital whenever
the symptoms would flare up. My friends would come to visit but I had a
difficult time following a conversation and remembering events.
Initially, I kept it all to myself. When I began to leave my house for
trips to the grocery store, I had difficulty remembering names of people
that I had known for years. It was so frustrating to me. As an
elementary school principal, I prided myself on knowing the names of
most of my students. It seemed that I could not remember anyone now.
When I got home, I started my quest for information. I read several
books about coping with MG, and found information on the net. This was
a challenge, because my memory was moment by moment, and I often found
myself returning to the same book or webpage for something I had
forgotten. I learned that MG occurs when antibodies produced by the
thymus gland attack the cells that use and manufacture the
neurotransmitter acetylcholine. This substance helps conduct messages
between the brain and the different muscles of the body. No wonder my
brain felt so fogged!
to the physical limitations, I realized that I would probably not be
able to return to my job with the school district in the Fall of 2004.
It was a depressing and sad time for me, as this was one of my goals for
overcoming MG. During those long, dark months, I depended more and
more on my faith to get me through and to help me defeat MG.
After seeing a counselor, I made an appointment to apply for graduate
school. I was afraid because I knew that I would need all of my mental
faculties to get into graduate school. But, nonetheless, in spite of a
memory that more often failed than not, I plodded through. I learned
that I needed to take a graduate school exam to be admitted. I began to
study for it. Hard. I could read the information and study for hours
and not remember anything that I read. I had difficulty with the
simplest of math calculations and trying to remember any vocabulary
terms was almost impossible. The fog over my brain remained thick.
this time, my son was my primary caregiver. He took care of running the
household and taking me to the doctor all while he worked full time and
went to college full time. One afternoon he came home from work to help
me with some errands. I wanted to give him a list and ask him to make a
trip to the grocery store for me. I could not call his name. I knew
him. He was right there in the other room. He is my son, but I could
not call his name. I was devastated. How could I not call my son’s
name? He came into the kitchen, put his arm around me and told me he
loved me. I cried.
my next trip to the doctor I complained about my poor memory. I shared
with my doctor what had happened. He said that the stress of a chronic
illness may cause some difficulty with memory. It was much more than
that. I felt stress, yes, but I believed it was the side effects from
the prednisone. I was experiencing many of the side effects that were
described in the literature on the drug. My doctors told me to be
patient. For several months I complained to my doctors that I couldn’t
even remember the simplest of things. My son and my friends were
patient with me but I knew something was just not right. One day a
friend suggested that I try lecithin. He said that it was used for
memory and that it boosted acetylcholine production. I went to the
health food store to buy some. When I told the sales person that I
wanted lecithin, she replied, “Oh, brain food!”. She told me that many
people use lecithin to help improve their memory and that some
practitioners recommend it for patients with Alzheimer’s. I took my
first dose of lecithin on November 1st 2004. It was a
granular form which I added to juice or water. I took two tablespoons
continued to study for the graduate school exam during that time. By
the first of December I began to notice that I was remembering things
better. I thought that I could tell a difference in the way I was
feeling. I took a pretest and was able to recall some of the
information that I had studied the day before. PROGRESS finally! I
told my son that I thought I was feeling better. About a week later
friends began to ask me what I was doing. They commented that my eyes
looked brighter. One friend said my eyes were turned on.
After taking lecithin for 5 weeks the fog lifted. It seemed to happen
suddenly, like the sun coming out from behind the clouds. One day my
brain was foggy and the next day it had lifted. I know that it happened
gradually over the 5 weeks but it felt like the light bulb just turned
on one day. Now I never miss a day taking my brain food. It has made a
dramatic change in the quality of my life. I took the graduate school
exam and passed. I plan to begin school this fall. I am learning how
to live with a chronic illness but I know that I don’t have to do it
with a foggy brain thanks to my brain food.
by the way, it’s Todd. My son’s name is Todd.
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