Date: 01/24/06
Name: Jen
Home: Hampshire, England
Email:
Website:
Title: Double Vision
This Story was originally enter
in our Guestbook
Thank you so much for sharing your story and your theories of possible causes
for MG. I read your book a few weeks ago and, I have to add, I stayed up most of
the night because I had to read to the end! I felt so emotional when I had
finished - you touched many chords. It proved a turning point for me so I had to
return to your site to thank you and to tell you that the double vision I have
had since last May is, I would say, 90% better. I am lucky that I have only had
double vision but it has been a long road to health because I have done it
without recourse to Mestinon or steroids. I first had double vision in 1994
which baffled the experts and righted itself after 4 months. I then had perfect
sight until 2003 when I had double vision again (again undiagnosed). I thought
sleep was the answer - I had just been overdoing things and, yes, it went away
in just 4 weeks. So in May 2005 I didn't panic, I just concentrated on relaxing
and sleeping but nothing I did seemed to help and it became clear I was going to
have to push for a diagnosis. With the diagnosis came short-lived relief when it
began to dawn on me that my body meant business this time and if I didn't want
MG to affect more than my eyes I needed to do more than just address obvious
health issues like better diet, exercise and more sleep. When I read your book,
I really related to your theory that certain personality types may be
susceptible to MG, especially ones having a "strong sense of duty". I realized
how much I had taken on caring for an elderly mother (she lives not far away in
her own flat but I have taken on more and more responsibility for her over the
last few years.) I have now organized qualified people to share that caring with
me (a huge relief!) and this means I can now spend quality time with her and we
can enjoy each other's company instead of me running about coping with crises
all the time. I also realized I was ignoring my naturally strong creative needs,
never getting around to doing those things I enjoy and which I feel are my
special gifts. I have enrolled in a life drawing class and, after overcoming a
fear that I would not be able to draw as I once could, I have found that as I
immersed myself in concentration I forgot about my eyes and they have improved
measurably with every class. I also really related to your camping trips on your
own - I had said to my husband right back in May that there was a strong feeling
inside me that I needed to find a small cottage on a deserted island in which to
spend time on my own before I could heal myself. There's not much wilderness
here in Southern England (!) but I did start up Yoga and this has given me the
tools with which to meditate and relax. I can now see a time coming in the very
near future when I will be able to see consistently and all day, and I will
endeavor to take forward the lessons I have learned into a healthy drug-free
future. Thank you so much for your help and inspiration. Kindest regards, Jen
(from Hampshire, England)
Date: 09/06/04
Name: Donald Ewers
Home: San Antonio, TX
Email:
Website:
Title: A Parallel
This Story was originally enter
in our Guestbook
What an incredible story but definitely not "unbelievable" incredible. It so
closely parallels my own life story, it is quite remarkable. I just came across
the book last night and couldn't go to bed until I had read it all. I was in the
Army, 1973, in Texas no less, at Brooke Army Medical Center, Ft Sam Houston here
in San Antonio. The entire story would take at least another 80 pages --
probably more. I was first diagnosed with late onset acid maltase deficiency, a
diagnosis that has been well confirmed. It has very similar symptoms to MG. I
was medically retired at 100% in 1974. This past March people began to ask me
what was wrong with my eye. "I don't know. What's wrong with my eye?" I would
respond. They would say, "It just doesn't look right." After a few days of this,
I saw my primary care physician who got on the phone to my neurologist almost
immediately when he saw me. My neurologist had me immediately come to his office
and it is not too much of an exaggeration to say he almost had a panic attack on
the spot. My eyelid was drooping to the point I could barely open it by then and
it didn't take very long to confirm I also have MG. I have precisely the
personality type described in this book and, having read it, now it doesn't
surprise me that I have MG. I learned over a 30+ year period how to push my
muscles way beyond the norm thanks to the acid maltase deficiency. And the
amazing thing is that I have already been using many of the techniques --
meditation, rebound -- to deal with the AMD. One other coincidence, I teach
photography (was never patient enough for painting) and am working on a series
of books on the South Texas hill and brush country that began while hiking in
several Texas State Nature Areas. It is going to take me a few weeks to sort
through everything that is racing through my mind right now. Thanks for making
this book available on the web. I will be in touch by email soon. Donald Ewers,
San Antonio, TX
Date: 06/15/04
Name: Deborah Lynn
Home: ATLANTA GA
Email:
Website:
Title: Same as my Husband
This Story was originally enter in our
Guestbook
Dear Sir, I have just finished reading your publication. I can't tell you how
much I enjoyed it. I read it in just a few hours. I was so grateful to have a
man, similar to my husband give such a detailed experience about dealing with
such a life changing illness. My husband, a Peruvian, whose father was a Chief
Engineer for the Marshall Marines in Peru followed his fathers example in
ambitiously moving to the United States more than 25 years ago and carving out a
life for himself with no help from anyone. We now have 5 children and 2
grandchildren. He has two months ago been diagnosed with Myasthenia Gravis. His
work is Running a Company single handedly, Construction. Commercial and
Remodeling. Since his diagnosis he has been working as if it is his last chance
to ever draw money....Just as you said that you did the first year of your
diagnosis. So far he only has his eyes and neck effected by the illness although
at times he chokes easily over water, and once on food at a restaurant... I cant
tell you how much it has meant to me to find your book to understand him. We
actually have the opportunity to sell our home and build on some land in Costa
Rica and let my husband draw disability. I have decided that is the right thing
to do to simplify and allow my husband to have time to heal and put into
practice the suggestions that you have made. They make so much sense to me. I am
especially fond of the meditation idea, and its connection to a faith in our
Creator, as we are a very Religiously devoted family," Jehovah's Witnesses."
Meditation on Spiritual things and especially God's Word the Bible is part of
our Dailey routine. My husband has given us many years of hard work and comfort
in making a good living for us and I think that now in his time of need it is
only right that we put him first for a change. Your beautifully written book has
been a great help to me. I cannot emphasize that enough. My husband really is
sure that he is not going to get any worse. I am not sure. Besides his being a
determined person as you describe the type that is effected. His dream was to
get out from under the extreme pressure of his hard work and Moving to Costa
Rica and having a simple life and teaching our children a better way to live. We
did this and my middle child was raped and we returned to the States. I'm sure
he had to have covered his feelings and suppressed this , having a deteriorating
effect on his immune system. He returned to have the same stress and has had
sleep apnea for 15 years. He also gained weight up to 400 pounds at the time of
his diagnosis of mg. Since then he has been on a diet and lost about 50 pounds.
He still works hard on this. So my point is you can see that he fits the profile
as you have described. I am sure I will continue to read this book over and
over. Thank you so much for your eloquently written book that will help me help
my husband of 26 years, he is only 53 to cope with this disability. P.S. did you
ever resolve the fear of the flying experience... Truly I am grateful, Deborah
Lynn , ATLANTA GA.
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