LETTERS FROM READERS
April 19, 2008
This morning, a woman in her 70s, who has suffered ms all her adult life, told me that she suddenly found herself standing across the room getting a book out of the bookcase. She was shocked to realize that she had lifted herself unaided, out of her wheelchair, and walked to the other side of the room. She has been walking since!!
Eva Marsh Copetown Ontario Canada
March 20, 2008
I was at your presentation on March 17. At first I didn't want to go as I thought it would be too depressing...it was quite the contrary. I thoroughly enjoyed myself and loved your talk. You are an amazing woman. In my head, I can visualize you crawling around on the floor with your little daughters. Also, I can relate to soooo much of what you said. I didn't have such a devastating disease as MS, but two years ago, I had a very similar experience in a lot of the things you said. ...especially when dealing with the doctor's and drugs. Also, I want you to know that I am healthy and happy today, because I did my research (on the net) and book store, and discovered what caused my disease (very rare reaction to a malaria drug, Malarone)...almost overnight, within 2 months..I developed a case of severe psoriasis. Psoriasis doesn't sound bad, but in some cases they give you 2 years to live. I had 3 forms of it. It covered 95% of my body. I thought my life as I knew it was over. I am a very active person, climbed Kilomanjaro, ski, sail, swim, love biking. For a while, I couldn't walk. It hurt too much.
I spent 6 months visiting doctors, specialists and using steroid creams and lotions constantly. When I asked if there was a cure and why should I get it so suddenly at 50 years old, I was laughed at. I was told to 'learn to live with it'! They did nothing to aleviate my agony. I was on fire...at one point, my skin (covering my whole body, except the palms of my hands and soles of my feet and most of my face) became hard and 'shell-like'. I called it my 'turtle's shell'. The next step was chemotherapy. Yes, they use cancer drugs for psoriasis! I decided I was getting no-where and had to do something myself. Well. to make a long story short, I knew that taking drugs got me into this mess and I read and read (similar to you), and went to workshops and naturopaths and developed an email relationship with a lady like yourself who wrote a small book (called 'Healing Foods') . She still emails me and lives in the Texas. She is an inspiriation as she suffered in hospitals for years as a child. Eventually, She 'cured' herself and gave me hope. You remind me of her.
Ok, this is my point. YOU give people HOPE. Sometimes that's all we need. To see that someone else can overcome this awful thing, especially when the doctors say, no, there isn't any hope.
I started creating and collecting my own 'recipe' book as diet is intrical to controlling Psoriasis. I totally believe now that it can be cured. Also, you have to be patient. A 'natural cure' is slow..not like the 'overnight' drugs that are given. It took me exactly One year to the day to be 100% free of the disease.
I found a natuopath who worked with me and he asked for before and after pictures as he was thrilled with my recovery. I took before pictures. Mine were worse than any others that I'd seen in books, so I deleted them. I never showed them to anyone. I wish I'd kept them now. They may have helped someone.
At one point, I couldn't walk and couldn't wear clothes as they hurt my skin too much. The vacuum was kept beside my bed.
Eva, I loved hearing your story. It makes me believe that there is a whole other approach to 'life' out there. It just confirms my 'new' thoughts about medicine and doctors. I'm not a scientist like you, but I can read and learn and had a skin specialist tell me that she was learning from me. I was shocked. It actually depressed me that she knew so little about my disease. It gave me no hope. Now, it's like my eyes have been opened.
Today, I am fine. Close to 100% of the psoriasis is gone. I'm back to biking and enjoying life. I also love to dance and plan on joining back with 'The Oakville Cabaret Dancers' next September. I had to stop dancing with them. They didn't know why.
Thank you again for telling your story. More people need to hear of stories like yours. YOu are very brave to tell it. Catherine, Ontario Canada
March 2, 2008
I am very happy that you liked my letter and certainly use it as you wish. I am thrilled if it could be of help to someone else. Psoriasis is a bit 'tabu'. People don't usually talk about it as it is extremely embarassing. It's actually nice to be able to tell my story to someone who understands the 'fight'. My husband knows..he had to help take care of me at times. However, even my 3 kids don't know the horror of it. They never really saw it. It was therapudic for me to write that letter to you. Thanks again, and hope to see you at another speaking engagement. Catherine Dunn Oakville Ontario Canada
Tuesday January 8, 2008
I want to thank you for sharing your
inspiring story with us (Bridgepoint Health Centre, August 2007.)
Your indomitable spirit and perseverance are second to none.
I have read two other stories recently
that speak to the regenerative capabilities of our bodies. One was about
a man who suffered a severe stroke. He also started his recovery by crawling.
The medical profession had given up on him, and recommended that he be
put in a nursing home. He was a professor, and was able to resume his work,
his recovery was so complete!
Another story was about a man who was
hit by lightening. He was paralysed, but realized he could move some toes.
He started his recovery by studying human muscles. He moved his toes, which
in turn started the movement to adjacent muscles. By concentrating on each
muscle that was attached to the ones he could move, he gradually strengthened
the muscles up his legs, to torso & arms. He also found crawling helpful
to regenerate muscle & nerve activity. In both incidences, the men
were able to walk & resume a regular life.
I read Eva's book because my friend
has MS and my mother has Parkinson's. I can see how your experience crawling
to recovery, has helped in both these situations. Sharon Foster, Ontario
Sunday August 12, 2007 6:00pm
I just finished reading your book.
I have read many positive motivational
books, taken many courses, delivered many seminars and I have never been
as moved as I am now. Thank-You,
Mark Ironside, Director / Producer,
www.newMediaSTAR.tv
Monday, August 21, 2006
Thanks again for the informative and
exciting [workshop] day last Saturday. I had a few major paradigm
shifts and am processing all that is new and hopeful in my personal situation
healthwise, from what I took away from your talk.
You bridged my spiritual/medical quest
for the 'key' to healing, whether you knew it or not! I have been
searching for about 10 years.......
My quarks are quite happy these days!
The chiro and masseuse both commented on how much energy they felt around
me today..........fascinating." CA Calgary CANADA
Wednesday, April 05, 2006
I write you to thank you for publishing
your encouraging book. I read the German translation, and I found so many
common elements in your biography with the one of my wife Justine, that
I was very astonished. To begin with the title: my wife was a dancing teacher
working in her own studio. She is born in San Francisco, she moved to Switzerland
when she was 20 years old, and has 3 sons.
Her first clear ms-episode was in winter
2003, she was 50 years old then, but retrospectively fatigue was present
since 2001 at least. Diagnosis was made in 2004, but her approach to deal
with the problems evolved already before diagnosis. She was in her
4 years of Feldenkrais training then and she used these methods and techniques
very successfully to recover and get the security of movements back. It
seems, that you discovered similar patterns, specially learning from babies
(crawling etc.) is one of the most important things in Feldenkrais method.
And of course "sensory awareness" is important. There is a German ms patient:
Sonja Wierk, who recovered from a very bad state by working with Feldenkrais
techniques and developing them into a specific form of ms "treatment".
As she was unable to move her extremities at beginning, she just imagined
movements so intensely, that they came back. She is an old lady now, but
she still offers courses. It is interesting, that people with completely
different backgrounds came to similar ideas and results!
I am a doctor of family medicine in
the Swiss mountains. It was never my goal to be an ms specialist ... but
of course I had to read a lot of articles about ms in the medical literature
and in the internet. The ongoing campaign of the pharmaceutical industry
(interferon for all ms patients!) together with prostituted doctors is
scandalous in my eyes.
I don't know if this e-mail is interesting
for you, but after [reading] your book, it seems to me, that you know quite
a bit (which is another compliment for the book). Lorenz Brassel,
Switzerland
January 18, 2006
How could I let one more day pass without
wishing you the best for 2006.... calm,
peace, strength and wonder for the New Year. You
made a great impact on my life in 2005. [workshop] I
often think of you... your words of wisdom, your model of determination,
your persistence and positive energy... and
smile. Hope all is well in your world.
With love and thanks Marlene
Kouri, Ontario, Canada
March 31, 2004
I was diagnosed with MS in 1995. I
am now 40 years old and living a normal life. When
I was first diagnosed my health started deteriorating, but when I got on
with my life and understood more about
MS my health started improving. I found
your book interesting because it made me want to read on further each time.
Your book gives me more will power
to carry on with my normal life.
Rose Hamilton, RR 1 Fergus,
ON, CANADA, N1M 2W3
September 24, 2003
I was nervous about going to your presentation,
but I knew after being recently diagnosed with MS that I needed to do something
different. Well I can say that I'm more than glad that I did. The
first thing I must thank you for is your inspiration to live, and I mean
really live.
Number two is that MS is not the end
of you as the person you were or are. Three
is follow that little voice inside that says "You Can," not "You can't."
Four is take charge and know what your talking
about, as you progress through this setback and don't just accept other
peoples interpretations ( Neurologists, Doctors, Family, Friends) of what
they think you have or what you should do about it. Five
would be do the best you can with what you have, at the time you have it.
Six would be "Follow Your Gut".
This list would continue for days based
on the hour and a half you shared with all of us. Listening to you and
now having read your web pages, I am going to do the simplest of things
to get really started, drop a check in the mail for a very special book.
Personally I think it's gonna be a great place to start.
Thank you again, as meeting you was
my pleasure.
Looking forward to learning and hearing
more from you.
Faithfully Yours Mike McArthur,
110 Cedars Lane, RR # 4, Box 67, Flesherton, ON, CANADA, N0C 1E0
July 19, 2003
The day I received your book is the
day I read it from cover to cover and I cannot think of anything to say
except WOW!!!! You certainly are an amazing lady, definitely an inspiration
to many and not just MS sufferers. I am so glad you wrote your story in
this book, it will help many people who are suffering from MS attacks.
I have been one of the fortunate ones, I suffered
an attack 30 years ago just after I had my 2 little girls and when I left
the hospital the specialist told me that I have either MS or a tumour in
my brain that will gradually deteriorate my brain. The MS did not scare
me as much as the tumour theory. Thank
God nothing major happened to me after the initial attack which did take
me months to get over and I actually had forgotten all about ever even
having had MS until it showed up in an MRI I had a month and a half ago.
So you can see that I have definitely
been one of the few that have an attack and then no more. Reading your
book has truly inspired me and I could relate to you in many of the things
you wrote about your attacks, I really admire you in the way you have dealt
with your illness, you have had to go through much, may God continue to
bless you and keep you in His care.
After about 3 years after my attack
and making sure in that time not to have more children (because the doctor
said I would have more and worse attacks), my husband and I went to get
a second opinion from a doctor my cousin worked for at the time.
You would like this man, wow, what an optimistic, encouraging, inspiring
doctor who told us not to worry about an attack that might never happen.
He asked me if I was worried about the possibility of leaving his office
and getting run over at the intersection which of course I was not. He
also informed us that out of all his MS patients there were only two elderly
that were in a wheelchair. He also mentioned that getting pregnant, the
baby would in no way suffer from me having MS. You can imagine that we
felt much better and more relaxed with this MS thing and in the next couple
of years were blessed with two sons. I
have thought about you many times since I read your book. I am sure I told
you already that I was very much impressed with the way you handled your
MS attacks and worked so hard each time both physically and mentally to
get well.
I do think that the doctors are a lot
wiser about this subject now then back in the early 70s, my doctor at that
time said that I would have further attacks and get worse and worse until
I was in a wheelchair eventually, quite the encouragement eh? Funny
thing though, when I was 6 weeks old and had the croup, the doctor told
my mom that I would die and if I did make it I would have a weak chest
for the rest of my life, neither happened.
I really think that your book will
have helped many people realize that they should not panic and give up
when MS strikes but to fight back because recovery is possible, you
have definitely proven that. Thanks again for sharing your story and I
will definitely read your second book also as soon as it is published.
I wish you all the best and may God continue
to bless you as you continue to be a blessing to the many who read your
books and hear you speak. Blessings,
Hilda van Drongelen St George Ontario
CANADA
February 15, 2003
I had a very busy autumn starting with
hiking down a local mountain during a Huckleberry
festival, 3 years after the MRI indicated MS. You had inspired me to be
able to try that. The next 3 months were filled
with much work and activity. Long story short,
my husband and all three of my sons had the flu during December and then
two of them got it again right after
Christmas, but I kept plugging away during the holidays. On
January 2, 2003, I was assisted into the doctor's office for a script to
help rid me of what I perceived to
be vertigo, which was actually the first unsteady step into a deep
bout of the flu. Within a week, I was having
a great deal of difficulty walking upright and
climbing the stairs was very scary.
On Jan. 13th, I was barely able to get out of bed and
stumble to the bathroom. We have a 2 storey house and I ended up spending
a week upstairs, using a borrowed wheelchair
to get into my one sons room just to watch
TV. When I wasn't laying in bed or
sitting in front of the tube for an hour or so, I sat reading.
The book I re-read was your Black Patent Shoes:
Dancing with MS. This time I took much
of what you wrote as an instruction manual. When I couldn't bend my legs
or walk without my toes pointing and
bending under, two things kept jumping out from the pages.
The first was "No negative thoughts allowed" and the second was exercise,
exercise, exercise. I ended up with rug burn
on one elbow as I kept losing balance while
trying to crawl, but crawl I did. I also kept telling my worried and willing
husband to let me try to do whatever
I thought I could. Helping me, wouldn't necessarily be
helping me. By January 23rd, I felt
stronger & borrowed a walker and started walking about
downstairs and then practised climbing the stairs whenever anyone could
stand by to assist if needed. Each
day I improved a little physically and a lot mentally. I
am very happy to say that by February 2nd, I went back to work. Walking
is still a little jerky at times, but
I believe that your words of incredible wisdom and perseverance
throughout your own struggles, inspired me
to work for recovery. I thank you for sharing your
experiences so thoroughly and I now know first hand that this disease may
cause the odd bump in the road but
it only slows us down, it doesn't have to stop us from living.
Thanks to the first reading, I ended up going
back to work part time and after reading your
book the second time, I missed less than a month of work. When first diagnosed,
the neurologist didn't care about my med sensitivities,
just pushed the indictable of "his"
choice. That medical pessimism encouraged me to learn how I wanted to manage
the disease without drugs. I believe strongly
in the Body, Mind, Spirit connection so I am
still managing my MS with diet, some vitamins and as much exercise as I
can handle. I have an appointment at
the MS Clinic in May (to satisfy my GP because I haven't seen
a neurologist in over 3 years.) Thank you again. Peace and love always,
Tally in Alberta
July 25, 2002
Thank you Eva.
Tears flowed with amazement and
my jaw rarely closed. You are the first to justify my experience
of the last seven years. Thankfully I've had good neurologists who chose
to say positive things to me. Dire
predictions for my future were kept to themselves.
My full recoveries, due to normal living
and exercise when I was able, were self diagnosed
as "I'm just lucky I ";
I had an exacerbation this past October
but went to work during it, which, in time, caused
my first depression. I had finished an eight month computer program course
two years prior, obtained the job, and was
NOT going to quit now.
I did not get any better, as I normally
did after a few months, and continued to work and wore
myself down. For the first time I was losing hope. I began expecting less
of myself physically. I finally quit
work and regrouped. What I feared the most was quitting but
once I did and began taking care of myself
all was well.
Then I got Black Patent Shoes from
Laura. A signed copy.
My husband read the book in two sittings,
as I had, and it touched him greatly. I'm
very interested in everything you have been involved in and Dave, my husband,
told me he immediately looked for a
web site. I will continue to be inspired and encouraged when
I look up this information.
I'm now, thanks
to you, starting the process it takes to be accepted into UBC. It
is very important to me to train my mind so I am able to organize my thoughts,
slow down, think.
Alter 16 years of wonderful
motherhood it's time to concentrate seriously on my challenges.
I believe again in my future.
Thank you, Thank
you, Thank you. Sandra Godkin BC CANADA
Email Tuesday August 20, 2002
hope this finds U doing well.
over the heat wave and humidity too!
just wanted to share some good news
with U.
after all, it was U that made me think
about controlling my own life!
I went to see my specialists that treat
me for
Crohns and Dystonia.
both doctors said they couldn't understand
what was going on with me, but ...
both illnesses are in remission!
They cant understand what i am doing,
but they want me to keep it up.
And ... the best news!
I never have to see either one of them
again.
just keep in touch with my family doctor!
thanks again for the kick Eva.
keep on Dancin' my friend! love
Trish Ontario Canada
November 2000
I have just finished reading your book
(about 3-4 weeks ago). I have MS, not as severe as you do, but severe enough.
As I'm writing this I'm smiling with the irony of my comparison. My relapses
never paralysed me, but the disability of my MS has been worse than yours
- until I read your book!
Over the past few years, I have learned
the secret of acceptance over things I cannot change. The peace this has
given me has been wonderful. When I was diagnosed I with MS in 1998 (although
I had known it was MS for years before), I applied the same acceptance
to my MS. I have been "handling" it remarkably well, from an emotional
perspective.
But the "relapse" in 1998 was frightening.
My relapse in 2000 was even more disabling, and again, I "accepted" my
MS. Then, a cousin sent me your book.
Now you must understand, as I'm sure
you do, that I was a little tired of yet another anecdotal "cure" being
offered to me. Everybody seems to have one - or knows someone who has one.
Bee venom, mushrooms, herbs that purge the system (read exlax), herbs that
strengthen the system: the list seems endless. My attitude has been one
of patience but scepticism. To my mind, your book was no different.
One evening I sat down to look it over.
I had to force myself to put it down! I started exercising immediately
(at the first sitting). I was so excited! Your message has hit home with
me.
MS is not something I have to accept!
I can fight it with exercise!
This makes an incredible amount of
sense to me. That our bodies can rebuild the myelin sheath in the same
way that they do in the first place makes sense! So I've started exercising.
With me, my left side is affected.
As I am left handed, this has been a real problem. I'm handwriting this
letter to exercise my hand. I'm sure you can see it needs it (smiling).
Last night (Saturday), and the night before, my wife and I went dancing!
And just a few short months ago, I was forced to use a walker during my
last relapse!!
I am gaining strength everyday, and
with it, my energy level is soaring!
So I'm writing you to let you know
you've made a difference for me. As I read your book, I recognized the
emotions you described. With each relapse, the fear of your not knowing
what was going to happen was familiar to me.
Can I make it through this? Will I
be ever be able to work again?
Will I have to use this walker for
the rest of my life?
Will I end up in bed for life? Unlike
you, I treated each relapse with acceptance.
Putting faith in the Cosmos (my word
for God), Emotionally it worked and worked well.
But now I'm refusing to accept it!
I caught your infectious will and desire to live a full and physically
healthy life.
My friends all seem to be nodding and
smiling as I describe my exercise with just a little sadness - just a little
"we'll be there for you when it fails." I tell them about you, about your
paralysis, about your victory over it. I think most of them are afraid
to believe it works.
Maybe I'm reading too much into their
lack of excitement.
But you know, last Friday night, when
Kate and I were dancing jive and cha-cha, one of our friends told her between
dances that to see me up there dancing, to know and remember me using that
walker, is for him an incredible sight. He said I have just the attitude
required to beat MS!
When Kate told me that on the drive
home, I knew my friend understood! Part of my attitude comes from you.
Thank you! Dan from Calgary, CANADA
I just want to say how invaluable your
book has been to me in dealing with the health care system recently and
now.
I have had the worst MS exacerbation
of my life to date - couldn't even wiggle my toes or feet --and ended up
in emergency via ambulance with severe back spasms.
The doctor on call as he stood by my
bed wringing his hands said he didn't know what was wrong, didn't know
what to do, didn't know much about MS!
I had to tell him what needed doing!
and the tale of horror goes on!
Thanks to having read your book recently
I was able to "hang onto my will to get better" and tell them I was the
one in charge of my health care and that I needed a team with doctors,
physio, nurses, and alternative therapists etc on my team but that I would
be the one making the decisions!
I was labelled as "uncooperative and
stubborn' Only my doctor believed that I could walk again and I shall.
Can stand now and pull myself up to the counter!
It WILL come! He told me to "do whatever
it takes to get better.
The long term care and physio and nurses
just told me to "be realistic. This is where you are going to be forever.
MS is a downward spiral."
I told them I was being realistic and
that I WOULD walk again!
Been such a horrendous experience dealing
with the "system". Have written letters to the powers that be (the heads
of all three) locally and regionally voicing the shortfalls/pitfalls in
the system, the negativeness, and offering suggestions to improve.!
(I am trying to make a long story short
here!!)
Anyhow, without having read your book
I am not sure I would have been able to stand up to what I knew to be right
for me and would have become "squished" by the system and persuaded that
I would never walk again. "Let us do what is best for you."
So thank you thank you thank you, Eva,
for the excellent book!
We are recommending to the health care
people here that it be compulsory reading!
Aileen, CANADA 1999
Turmoil of emotion your book brings
... have just retired as Sports Physiologist, but have never crawled through
the literature to focus on my own illness. You
have precipitated some real heart searching ... diagnosed in '78 ... by
'94 in a wheelchair.
But now with your inspiration, I pray
that I have the courage, determination and perseverance to go beyond the
maintenance physio program. I intend to read and inform myself. From now
on it's up to me.
Brian, UK 1998
Several years ago my husband was told
he had MS. That day he went out for a jog. He still jogs, rides his bike
and goes for long walks. The pain in his legs was unbelievable but he would
not stop jogging. I believe, like Eva, his inner strength has helped to
keep his MS in remission. He has very little patience with those who get
a case of "poor me." Nicky,
CANADA 1997
I was diagnosed in 1965 and the doctor
told me that nothing could be done, not to have children and that I would
be bedridden in 15 years and dead in 20. I am somewhat stubborn and my
daughters were born in 1968 and 1970. They both married in 1995 and I danced
at their wedding. I, too, have black patent leather shoes. I am a fellow
non-victim of MS. Jennifer, CANADA 1997
I have been doing your ankle exercises
for just 3 days and have stopped using my walking stick. I am a pianist
by training and until I heard your tape I thought I'd never play the piano
again because of my useless left hand (like spaghetti fingers). Now I know
I must simply start practising again. Bryan, UK 1997
I'm fascinated and overawed by the possibility
that it is in my hands to get better Im going to buy a book on yoga, which
I have done long ago and follow the crawling instructions. I've re-read
your book, it was all fascinating to read again as the first time - a real
who-dun-it.
I have also lent it to my physiotherapist
daughter and she was equally fascinated and amazed as me at myelin regeneration
and she's just finished an update course on MS. Nobody has recognized remyelination
in the CNS that I have read about, including my own neuro-based doctor
... 1st letter Patrice, UK 1997
In the three weeks since beginning the
crawling and resumption of yoga there have been a couple of occasions where
I felt something improve. I did my housework in 1 day instead of 2 and
walked a couple of yards unaided. My husband keeps a diary and helps with
exercises too. I will write again, and thank you for everything. Its lovely
to have something to work at that's positive. 2nd letter Patrice,
UK 1997
In the 6 or 7 weeks since I read your
book, I've had no major improvements BUT my stamina has definitely gone
up and my foot raising (lying) is really quite good and when my physio
daughter checked my ankle reflex in the front (sitting) she said she could
feel the muscle trying, though I can't lift the toes yet (sitting). I think
she was impressed although she was in 'physio mode'. 3rd
letter Patrice, UK 1997
