October Newsletter Vol 1. # 8

[Guest guest]

The PERSPECTIVES - Nine Terrific Articles to Savor and Enjoy!

October 25, 2001

Volume 1, Number 8

IN THIS ISSUE

1) Living and Learning to Live Life to the Fullest (by Heidi)

2) Acceptance ( by Nina)

3) A Law Career and the Red Convertible (by )

4) Goals (by Sam)

5) Why I Chose Home School for My Child (by )

6) Self-Esteem (by Paolo)

7) New Road Lies Ahead - a Poem (by Sue G.)

8) My Favorite Physical Therapists; Rascal and Tez (by Liz)

9) Childhood CMT (by Marta)

10) Editorial Note

1) Living and Learning to Live Life to the Fullest - By Heidi Wingedeer

I have been faced with many challenges in my life. Charcot Marie Tooth

Disease is just one. Sometimes I feel alone in the world of CMT since I

do not have physical contact with other CMT persons in my small

community (other than my children). However, I do rely on my outgoing,

positive attitude and all I have to offer. Not that I am Miss Sunshine

everyday because that is not reality. However, I enjoy many social

opportunities and I have an extended family which I am part of which is

Rooted Circle, our Native American Community. It is here I can seek and

enjoy being my true self. I also know that when I am at a loss for

solving my problems in life I can count on one who I call Teacher. This

is a big help to me and has spiritually uplifted my energy and outlook

on life.

I have always said CMT is the silent disease. As one sees me walking

around it appears nothing is wrong. When in actuality, my nerves are

dying and muscles are atrophying. When people look close at my hands

they can see that my fingers are now starting to claw a bit. This could

create a deep depression and for some it does. However, I believe I must

get up in the mornings and go out and enjoy life to the fullest.

To experience the magnificent natural paintings Creator has put before

me is amazing. The Fall foliage is a perfect painting of how to treasure

such a marvelous life here in New Hampshire. I am inspired in my writing

of poetry and stories for my children and talking with people who are in

need of a god listener. I love to laugh with my family: Seth (Rainbow

Walking Stick) who just joined too, (Many Beautiful

Circles) and Jory (Wisted Turtle), and my wonderful husband Mike

(Playful Cloud).

Everyday I seek the true purpose of my existence. I have found meaning

and that is to learn from all the experiences that are wonderful and

beautiful. I feel there are no rights or wrongs, instead there are

'experiences'. I have no regrets in life for I have learned from each

experience, grew as a result and continued on.

CMT has always been a part of my life. At the mall someone might see me

in a wheelchair, which I use for outings that require lots of walking.

People asked " what happened " ? My honest and loving reply is 'this is who

I am'. I say this with a warm smile.

I am blessed to have been put here on this wonderful earth and to be a

part of life. To live with job, happiness, laughter, sadness and shed

tears. I am human, I can feel, I can see, I can touch, and the most

important part of being me is to love others unconditionally and being

loved back by so many. This is what life is about for me.

CMT has affected me emotionally, mentally and physically. I cannot deny

this, instead I reach out to make up my mind to be positive and think

positive thoughts. Everyday before getting up, I tell myself 'this is

going to be a good day'. I am thankful and repeat this thought. This is

helpful to me to get myself going and remind myself I am special. Every

person is special for they are part of the whole called Life. If one is

sick, then we are all sick. Even if we live far apart.

Having three children, two of whom are disabled can be a real challenge.

It is at times very tiring, I get fatigued and have to rest when I would

rather be with my children playing or roaming about. Yet I realize my

own limitations and abide by them, or else I will become sick. My

husband is a big help at home but he works too.

I have learned one with CMT must understand and learn from their

limitations. The positive thing for me having CMT and my children having

CMT is that we can talk about our feelings. In turn I can advocate for

my children with real life experience within the school district which I

have done for the last nine year. This is a plus and doctors cannot

discredit what my family experiences daily.

I was diagnosed with CMT on October 15, 1997 along with my oldest son.

At first I experienced anger, despair, sadness and happiness all at

once. Since I started walking at 19 months old I cried and my mother

took me from one specialist to another. I grew up thinking this was all

in my head like so many of us.

I like to say that Creator gave me the wrong legs, that they really

belong to someone else. Sometimes I speak sharply to my legs " come on,

let's go " ! For a while I was saddened my children had CMT and believed

this was my fault.

However, I turned my thinking around and now believe we all have a

purpose and have so much to give to others and learn from each other.

Children are our first teachers! I am fortunate that my children got

their diagnosis early. The younger a child is when she/he learns of the

CMT diagnosis, the better their chances of learning to accommodate for

their physical challenges.

They know that they might not climb mountains or be Olympic skiers. Yet

they do know they are special and they have a family who loves them. My

oldest son asked me " Mom, why do you think we have CMT " ? I felt with my

heart and replied " Seth, Creator knows we are strong and knows we can

handle CMT. This is what makes us so special. "

So remember, my friends, you are a special person and have

wonderful qualities. Never let anyone tell you any different. We all

have challenges and CMT is just one of them. I also have Learning

Disabilities and at times have known depression and sadness. Now as an

adult I know how to laugh at myself too!

I have proved to myself and the world that I can do it if I just try.

When I was younger, my mother told me I would never graduate from high

school. Well here I am with an Associates Degree in Science in Early

Childhood Education AND a Bachelors Degree in Science in Child and

Family Studies and I earned the honor of Cum Laude when I acquired my

BS.

Yes, you can do it! So against greater odds, I went to work after 12

years of staying at home with my children and going to college. I became

a Pre-school teacher. Oh what a wonderful experience for four months. I

enjoyed writing the lesson plans, playing and laughing with the

children. Yet, this cost a fortune in day care for my youngest child. I

kept on knowing Creator would work things out.

I injured my knee at work. I did not return to this job but discovered

the road of substitute teaching. This is better on my health, time for

myself and being with my children. This way I can choose the days I

work. Finding this niche has had a positive effect on my health,

especially with less stress.

I am writing children's stories and in the process of starting my own

business doing laundry, with the help of my husband. It has not taken

off yet but I have hope and determination it will! Do what makes YOU

happy. Do not try to make others happy because this will not work. Think

of yourself and GO FOR IT!

2) Acceptance - by Nina

I am a 39-year-old Norwegian woman, married and living in England. Me,

my two sisters, my Mum and late Grandma were born with CMT type 1.

From early childhood to about three years ago I believe I subconsciously

refused to accept my CMT at all. I was in total denial that it is also

the progressive type. I always felt 'shame' that I was different than

others. My stubborn willpower has carried me through life, trying to act

like any other ordinary person. I hated extra attention at school,

having to go to the hospital for surgery, taking a taxi to school, etc.

I spent so many years fighting against reality - and that was really

hard work! I NEVER asked for help!

I would rather push myself to the limit to try to manage on my own,

instead of taking the offer of a helping had. I would force my patient

and kind parents to get me ice skates, skis and go to dancing lessons,

although in their hearts they knew I wouldn't be able to do these

activities.

This went on right up to my late 30's! I was so self-conscious that I

would think of the way I walked and what I couldn't do most of the time.

I worked in an office for seven years and was physically sick with

exhaustion every morning and evening, but my strong willpower forced me

ahead.

Eventually, I found my solution in drinking. I love it because being

drunk made me not care about anybody or anything. I didn't give a toss

about what I thought others were thinking of me - and behaved

thereafter!

Four years ago, I was physically, mentally and spiritually beaten. For

probably the first time in my life I had no other option but to ask for

help. I called AA one desperate and lonely night and God knows how

grateful I am for that!

My whole life, including living with CMT, has changed - for the better!

It was and still is a learning process, but the big difference is that I

have learned to fully accept of both CMT and alcoholism.

I have learned to be grateful for everyday. I am grateful for what is

important to me. For a kind, husband, loving family, good friends, my

beautiful cats, for a peaceful and quiet day and most of all for the

peace of mind and being able to accept every day as it presents itself.

I have learned to appreciate the small joys in life and the beauty

around me.

Some days I really have to work for this acceptance. As you all know, it

is not easy to feel grateful and accept a day of pain and extreme

fatigue. On those days I am now able to tell people how I feel and also

ask for help if necessary. I have stopped 'acting' and started 'being

me', funny feet and all!

I ask for help in shops, airports, and for anything I feel unable to do.

It was a revelation to me that there really are kind, caring, helpful

people out there - they just didn't know that I needed any help because

I was always " O.K. " up front.

From personal experience I now know that the worst thing that can happen

to me is NOT getting physically or even wind up in a wheelchair. The

worst thing that I can imagine happening, it loosing my sanity and ME!

Life with CMT is not easy, and I have my down days like most people, but

I try to accept them as they come. We have some big advantages; we can

only understand and empathize with others when we've gone through the

experiences ourselves. Although our bodies are weak, CMT does not affect

our minds and believe me that is the most important thing! God Bless You

All!

3) A Law Career and the Red Convertible - by

I was diagnosed as having Charcot Marie Tooth when I was a freshman in

high school. At that time, my doctor told me that I would never be a

teammate of Jordan. He said that I should look forward to a

career that would mostly utilize my brain. This news was fine with me as

I decided a few years before I wanted to be an attorney. My decision was

largely based upon my friendship with an attorney who was very

intelligent and drove a red convertible. Who wouldn't want to be like

that?

I learned quickly that hard work was going to play a major role in being

successful in my education, career, and life goals. Additionally,

seeking some simple accommodations for the issues that I faced were of

great importance in being successful as a student.

One of the issues I faced was I could not write as fast as other

people. At the beginning of every semester I would speak with my

teachers and make sure I would be accommodated on any written exam by

receiving extra time. I believe it is important to receive this

accommodation at any level of education.

Another issue I faced was that I received 10 operations on my feet to

correct the CMT deformity during my four years of high school.

Obviously, I missed some school and it was difficult to catch up with my

studies while I was recovering. I accommodated for this by taking fewer

classes during the semester and made up for it by attending summer

school. Working hard and seeking accommodations for the issues I faced

throughout my education made it possible for me to obtain my law degree.

I currently work as an attorney for a professional association insurance

trust. I now utilize dictation software in almost everything I do.

I encourage everyone to make goals and set out to achieve them whether

those goals are in education, career advancement, or life. There is no

question that people with CMT have certain issues to face in their

lives. The way I look at it is that everyone has problems; my problems

just tend to be a little more conspicuous than others.

By the way, I am still working on getting that red convertible!

4) Goals - by Sam

I've always thought that having goals was important, to give life

direction and perspective, to have something to work toward every day.

I knew I wanted to be a writer when I was six years old, writing rhyming

limericks about my stuffed animals and my family members. None of them

were really any good, but it was what I knew I wanted to be when others

would ask me what I wanted to do when I 'grew up.'

I will be attending the University of Oregon to get my graduate degree

in philosophy and religion next year, and to attend the creative writing

program that turned out Ken Kesey, author of One Flew Over The Cuckoo's

Nest, among many other writers of distinction. I have been fortunate

enough to have met several authors myself; Anne Waldman, Ellen Kort, and

Diane di Prima, to name a few. I've worked very hard every day of my

life to be the best writer I can possibly be, and I'm proud to have

several publication credits to my name. I'm hoping to write and teach

for the rest of my life.

I've always kept my goals in mind, in everything that I do, and try to

find as many things that relate to them as possible. I've worked in

many retail bookstores just to be closer to books. Having a purpose has

helped me deal with my Charcot-Marie-Tooth disease by giving my life

direction, as well as giving me self-worth.

5) Why I Chose Home School for My Child - By

I have a 12 year old son with CMT. He has had an IEP (Personal Education

Plan) for 4 and ½ years. As a student with CMT in the U.S. my son has

many rights in the public school system. The Americans With Disabilities

Act has opened up so many windows for children like my son. Spencer's

IEP plan is for both CMT and ADD. (Attention Deficit Disorder)

In Spencer's IEP we have requested an extra set of books to keep at home

and time in the morning to warm up his hands before he starts writing.

He also has a bathroom to change in before physical education. (He wears

AFOs and wanted some privacy while changing). He has front of the line

lunch pass. To spare his hands from over use he is able to take short

cuts in English. Many times they will have the kids write an entire

sentence just to add a period or question mark at the end. He is allowed

just to put in the punctuation mark.

Spencer has been struggling in the past few months with school. He was

getting stress headaches everyday and after school was just wiped out.

The Middle school 7th grade teachers were not as understanding as they

needed to be. One of his teachers made a comment about his math paper

that was quite degrading.

Several other school and teacher problems were really getting to me. I

have CMT too and physically I was getting sick over all the worry and

stress over my son and how he was being treated.

Spencer asked me to look into Home School. I have never wanted to be a

Home School Mom. I don't even like Home School Moms. I'll tell you

something about my life. I ALWAYS get what I don't want.

I am now Home Schooling Spencer. I LOVE not dealing with the school

administration and teachers who do not understand. We don't need at IEP.

He is at home with me and I know how to modify his day. I don't need to

go to any school meetings. I don't need to explain CMT to anymore

teachers.

Now this is nice. Spencer and I are slowly getting organized with Home

Education. He is getting good grades and learning a lot. He is also

learning to sew. His first Home School project is making a button-up

shirt.

6) Self-Esteem - by Paolo (Dr. Vinci)

In my experience as affected with CMT since the age of 6 AND as a

physician who has seen hundreds of CMT persons, to whom I have not only

given rehabilitation, but talked as their peer, I can say that self -

esteem is often diminished in affected people, especially young people.

For them, a major problem is related to the decision about having

children, due to the risk of transmitting the pathological gene, but

also to concerns about the ability to bring up children, since this is

often very tiring work.

Another cause of poor self - esteem in young people is the embarrassment

about appearance and in this age aesthetics is considered very

important. This is since handsome young men generally prefer pretty

girls wearing skirts and walking well, and on the other side, nice girls

prefer men with big muscles (it is our modern society that teaches so).

These problems with appearance can diminish self - esteem. Many CMT

people do not really choose their partner wisely, but just accept the

first one who wants them, even though she/he is not the desired one;

this can cause future unhappiness. And also in the case of conjugal

unhappiness, many CMT persons do not leave their partner because they

are scared of remaining alone without anybody to help them cope with

their disease.

I feel that the problem of self - esteem, as well as other psychological

problems related to CMT, must be addressed as part of a Rehabilitation

Management aimed at living a life as normal as possible.

How to improve self - esteem? First, by improving gait, stance and other

functional abilities by proper Rehabilitation Management; if deformities

in your feet are prevented or corrected and you can walk as far as your

mates overall without ugly orthotics and orthopedic shoes, you will feel

- and will really be - more normal.

Second, improving self - esteem comes from learning more about the

disease of CMT; genetic aspects, prenatal testing, and how to prevent

it.

Third, sharing personal experiences and problems with " positive " people

affected with CMT. And fourth, by searching support from a psychologist

who knows the problems of CMT and living with chronic disability. These

steps are all outlined in my book: Rehabilitation Management of Charcot

Marie Tooth (CMT) Disease http://www.stradeservizi.it/cmt.htm

7) New Road Lies Ahead - a poem written by P. Strong, shared by Sue G.

Hear where a new road you behold-pause,remembering the old,

Mercies granted day by day-helping others along the way.

Providential happenings. All the good and lovely things,

Happy days and sunny hours, music, friendship, gardens, flowers.

There were the clouds and sorrows too - but you were given many

blessings,

Blessings between blessings, sometimes hardly seen.

Undeserved, you took them all. Stop a minute to recall.

The pleasures that outweigh the pains-not losses, but the gains-looking

backwards Gratefully down the track of memory.

Drop the burden of regret, start anew. Forgive, forget-the hurt of what

was done and said. Here where a new road lies ahead.

8) My Favorite Physical Therapists; Rascal and Tez - by Liz

I have had many physical therapists over the years. They have all been

pretty good, but the two that I can think of as the best ever are

probably not physical therapists the way most would think of the word.

They have been my cat, Rascal, and my pony, Tez.

I have had Rascal for thirteen years now, since I was five years old. He

has been through all of my operations with me and has always managed to

cheer me up. When I was little, his purring would put me to sleep, and

so when I was in the hospital and had trouble sleeping, I would call up

my house and my family would put Rascal on the phone. I would talk and

tell Rascal all of my troubles, and he would purr and rub and get right

up against the phone like the phone was me. He also follows me around my

house, and if I trip, he will purr and kiss me and encourage me to get

back up and not to cry if I was hurt. I don't know who I would have told

all of my problems too if it wasn't for Rascal.

My other primary physical therapist is my pony, Tez. She is good for me

in so many ways; physically, mentally, and emotionally. Through riding

her, I have gained a lot of strength in my legs and I no longer have to

wear A.F.O.'s. She has made me able to run and jump, just as fast and

just as high as anyone else.

She has also made me more courageous; I have to be the brave one when

there are scary shadows or noises. She is perfect for me because she

always tries, no matter what. She was donated to our barn for

therapeutic riding, and was found unsuitable because she does not like

to stand still very long and gets nervous very easily if her rider is

nervous.

However, I find that she is a great therapy horse, she is a therapy

horse for me because she is a perfect balance of challenge, but she also

takes good care of me and catches me if I am unbalanced. I have also

taught her better standing skills. She has helped me in so many ways. I

have also helped her because when she first came, our barn owner did not

think she was worth anything, barely even the price of her own meat, but

once she saw how we had such a great partnership, she realized how great

a horse Tez was.

Because of all the ways that animals have helped me, I am trying to find

a way to give back to them. I am going to major in Biology in college

and for my Senior Project at school, I am going to work at rescuing and

rehabilitating abused horses.

9) Childhood CMT - by Marta

Childhood CMT. I sigh at the fond memories of my earlier childhood. I am

now 14 years old. The time seems to have rushed by in a flurry of

tripping constantly, falling even more often than I tripped, walking on

my toes, slipping down the stairs, falling up the stairs (yes, it is

possible!), dropping painfully expensive things and practically killing

myself to keep up with my older, more " physically capable " sisters.

My stubborn pride combined with my overwhelming desire for normalcy made

me a most interesting child. Initially, I was upset that the diagnosis

of my CMT immediately jerked me out of the real of my peers. I was

absolutely outraged that something could instantly rob me of my quest to

be another " normal " person. I wanted so much to deny that there was

anything wrong with me.

It took several sessions of pondering for me to discover there are far

worse things to have than CMT and I was no less normal than anyone

around me. How bamboozled I was to stumble on the fact that my friends

did not shun me when they found out I had the disease.

Having CMT has made me the most understanding and patient person I know

and I mean this in all modesty. I now comprehend personalities and

appreciate the trials we all have to face and the various forms in which

they appear. Also, that my CMT is just another one of them.

For me, the only thing CMT has forced me to do is analyze the quality of

life, and envision how I wish for things to do in the future. I've had

to supply myself with direction and ambition to obtain what I know I am

capable of. When people ask me how I'm doing, I can honestly say I'm

happy and that I'm enjoying who I am and growing into who I'll be.

What baffled me most is how relatively straightforward and yet complex

this was for me to achieve. All it took was taking a step back and

looking around.

10) Editorial Note

THANKS TO ALL CONTRIBUTORS!

Special thanks to all our writers for this Month's Perspectives.

We will continue this newsletter as long as the articles keep rolling

in. For ideas, suggestions, topics, length, how to submit and further

details, contact Gretchen at liliwigg@... The deadline for our next

issue is November 16. In keeping with the entire Focus, newsletter

articles are meant to share our CMT lives in a positive 'perspective'.