Re: Your Environment and CMT

[Guest guest]

Dawn,

I think you're right about environment but I don't understand what you mean

about CMT being dominate. So far only one out of two of my kids has it and I

attribute that to having them 16 years apart. Mainly because of things I learned

and things I've seen. Knowledge is everything. And let some dr or anyone try to

tell me that drugs and other toxins won't cause symptoms or make CMT worse and I

will tell them they better check and see how much crap they have..I've seen way

too much and I know my daughter can stay symptom free for a long, long time, if

not forever with the right nutrients and

limited exposure to toxins. Plus, I am still walking and get around pretty

good. I rarely have pain anymore either, and if I do it's very minor.

[Guest guest]

Right,

If the child gets it, the child gets it. We can't stop that from happening.

However, environment does play a part in symptoms worsening or even

starting. I believe nutrition and exercise can prevent illness and prolong

symptoms of genetic disorders.

When I was pregnant with my 14 yr old I saw a CMT specialist and he told me it

wasn't proven but it is 100% hereditary. I've also read somewhere before that a

person can have it and never have any

symptoms or have symptoms that they never notice because they are so mild.

We all know that everyone with CMT has it less or worse and can be effected

differently, even within families that have the same type.

Nutrients or lack of is what will determine to what degree of symptoms a person

will be battling. Stress plays a big part also but it takes nutrients to fight

stress too. Toxins can prohibit or effect the way our bodies metabolize

nutrients also. It's all there in black and white.

If there's an illness then some kind of defieceincy caused it.

[Guest guest]

First of all, remember CMT * is * a genetic syndrome. Research has proved CMT

has been present in the human family for 6 to 7 MILLION years, way before

Charcot, Marie and Henry Tooth began to communicate.

CMT is NOT 'caused' by the environment, or whatever your mother/father

took/ate/smoked when you were concieved. As a genetic disorder, CMT can be

dominate or recessive. Since the 90's about 40 subtypes have been discovered

with probably more to come.

Having said that, upon my childhood diagnosis, there was just " plain " CMT (no

subtypes, no proven genetic research) So, I've lived a long time now with mild

but manageable symptoms.

Depending on how I handle stressors, my environment needs to be as calm as

possible, as clean as possible (including the air I breathe), as organized as

possible, as thoughtful as possible, as focused as possible, etc. Noise is a

major stressor for me. Outside noise, like leafblowers all going at once. My

ears (sensory nerves) go wacko and my tremors can surge. So it is important to

me to be * aware * of my environment.

Gretchen

[Guest guest]

For most of us, CMT is inherited through our DNA.  Depending on the type, it can

be transmitted in a dominant or recessive fashion.

 

If you have a dominant form of the disease and your child inherits that

defective gene from you, then they have the disease too.  Your child has a

50/50% chance of inheriting it from you.  They either get your defective gene or

the other parent's good gene.  It's a 'roll of the dice', so to speak.  It has

nothing to do with the environment, but mere chance.  CMT1A is an example of

a type of CMT that has a dominant inheritance pattern.

 

If you have the recessive form of the disease, then both parents need to have

the defective gene in order to pass it to a child.

 

Some new cases of CMT do occur spontaneously in the DNA.  Once this happens to a

person, however, the disease can be passed to their children the same as other

forms.

 

For most of us, we have the inherited type of CMT, not the spontaneous type. 

It's much like our eyes being blue or brown.  It's strictly about the genes we

inherited.

 

However, environmental factors, such as stress, can definitely make symptoms

worse, as nearly all of us experience.

 

For more info:

http://www.charcot-marie-tooth.org/about_cmt/genetics.php

 

[Guest guest]

My ears go " wako " BI was diagnosed I atributed this to many ear infections as a

child. I don't think I have ever mentioned it to a doctor. I first noticed it

when keys would clang, my ear drum sounds like " WHAM WHAM WHAM " especially in my

left ear. More and more noises are making it happen. Just opening the siver ware

drawer makes me cringe! I have to leave the room if there is a small child

playing with keys, I just can't take it.

Maybe I should tell my neuro... then again what can they do or say but " yeah

probably due to your CMT " .

[Guest guest]

,

 

If that's what you have experienced, that's wonderful.  Continue doing what you

are doing!

 

My experience has been very different from yours.

 

I'm no longer able to work due to the pain & fatigue of this disease.  I have no

detectible responses in any of my peripheral nerves and I'm as weak as 'a 90

years old', I'm told by my doctors.  Yet I eat well, take supplements, have

minimal stress, and regularly move in the pool for exercise.  I find that doing

these things only makes a minor difference in how I feel compared to the toll

the disease is taking.  I do feel better emotionally, but the reality is that

I'm still weak and my muscles are continuing to atrophy.

 

The story is the same for the other members of my family who have this disease. 

They do an even better job at exercise and nutrition than I, yet every year,

despite their efforts, they too lose significant muscle mass.

 

CMT does affect us all differently.  In my family, for example, I have severe

pain and the others have no pain.  I'm also much weaker than they are and had to

stop working much earlier than they did, but we are all the same in that we are

all progressively deteriorating.

 

My family is a positive bunch.  We keep our hopes high, continuing with our best

efforts to stay strong.  And, when we get together, we share the efforts we are

all making to stave off this disease, but behind the smiles, we all know there

is nothing we can really do about it.  Not until there is a cure anyway.

 

To imply otherwise is to place fault and impose guilt on those who don't deserve

it.  If only I had more control over the disease. That would be great!  But

I'm certainly not going to stop trying.   And I appreciate hearing what works

for you.

 

 

[Guest guest]

,

What I mean is that I am from Buffalo, NY and I have heard that there may be

more cases of things that affect the nerves, such as MS, up north. Now I don't

live there anymore, I live in NC, which is o.k.  in the winter (better actually)

but in the summer, this part of the state is way too humid and I feel the

weakness more than I ever did in Buffalo, NY.

I believe chemicals do play a part too. I used to have binges where I would

drink a lot of diet coke and I would trip with my damn feet way more. Then, I

would stop drinking it and my walking would go back to " normal " (my normal,

anyway). so, that's what I meant.

Dawn 

[Guest guest]

Gretchen,

I meant premfdominate in certain climates. only climates was I thinking of. I'm

about to be logged off at lib.

Dawn

[Guest guest]

Dawn,

Ok, I got it now. And I hear ya. Climate makes a big difference. I live in Iowa

and I hate the winters. I plan on moving back to AZ one of these days. I was

never so healthy as when I lived there. The sunshine has such a healing effect.

Chemicals are bad. There are no factories were I'm moving.

[Non-text portions of this message have been removed]

)

[Guest guest]

Hello .

Reading this on a spring Sunday morning, does not compensate enough (if I could

choose freely )  ) for the hurt I feel as I read your mail.

It warms me and softens my heart while I read your words compose themselves

between a deep understanding, a clear recognition of your situation, a very

sensible view on how to deal with your ordeals, the spoken words for tears of

the pain -emotionally and physically- that you live with.I feel wisdom while you

speak. Thank you.

I am a mum to a grown up daughter who is quite ill in CMT...as also many of you

here on this site. She appreciate and accepts me joining the dialogues here and

from time to time even participating with my own words. What I don´t often tell

her of, is my pain and worry heartwise, as she struggles to make ends meet with

her situation. - She has twins that are 4 years old and just divorced

.....fortunately she has helpers to make things a bit easier.

-As you may imagine, she also needs time to be on her own, - totally on her own

- and the help has two sides to it of course. They are in this sense a

" disturbance " .  She just has been sick in pneumonia and her doctor wanted to

hospitalize her but she said no. It tears her up going in and out of hospital

and all she wants is rest in her own bed....and as you may imagine, this is not

easy with twins...Her children though, are also the greats light in her life.

When I listen to you , I feel the years coming on...her CMT

progressing..and it just hurts and worries me. I just want to say that I don´t

go around spending much time feeling worried and unhappy. I could also write of

the greatfulness I feel, from all the lessons learn by what CMT has brought into

our lifes.

Thankyou for your sharing.

love from Anne in Denmark

[Guest guest]

I ate the same with all three of my CMT kids. I took he same vitamins, had the

same doctor. They have all been affected with CMT differently of course. It

seems like nutrients would have been about the same with each pregnancy. Maybe

I am just in a bad mood today, but to me the nutrients theory would mean we all

have control over the progression of CMT and we don't.

[Guest guest]

This theory has been disproven over and over again with genetic testing.

[Guest guest]

Hello,

According to my experience,

I found that if I live in an environment where there people fight a

lot, I feel weaker, e.g., my roommates fight with each other.

Also, fighting with people makes me feel weaker. I think a peaceful

environment is very important. To feel good, I choose to interact with nice and

calm people.

Violent and emotionally unstable people make me feel weaker. I think this is

about energy field.

Cold weather makes me feel weaker.

Caroline in Taiwan

[Guest guest]

Exactly what 'Theory' we're talking about, I'm unsure.

However, though we don't see proper nutrition 'curing' CMT, I believe most

individuals who lead a healthy lifestyle can attest to the health advantages.

Regarding targeted nutrition, the mice studies DID prove a link between Ascorbic

Acid and reversal of CMT; that's why the human trials are now underway.

DNA is way too fragile not to suspect environmental impact in certain cases,

perhaps all cases, of 'life'.

Always keep an open mind to any possibilities.

[Guest guest]

& My Other Fellow CMTers:

First, I do not intend in any way to sound offensive or negative, but I'm afraid

what I have to say may come out sounding bad, and I truly apologize in advance.

But, I'm very concerned that a lot of important issues (and people reading

these posts) are being confused here.

As can be read by the research done by medical professionals & nutritional

experts, of course, nutrition and environment are very important factors to be

aware of and we should all treat our bodies & our childrens with great respect &

care.

However..., I'm not sure where you got your information:

(Posted

by: " CountryMom79@... " cindy196305 Sat Apr 25, 2009 10:02 am (PDT):

" ...environment does play a part in symptoms worsening or even starting. I

believe nutrition and exercise can prevent illness and prolong symptoms of

genetic disorders...Nutrients or lack of is what will determine to what degree

of symptoms a person will be battling... "

THIS SIMPLY IS NOT ALL TRUE.

Nutrients or lack thereof WILL NOT DETERMINE WHAT DEGREE OF SYMPTOMS will occur

in a person with CMT or when/if the symptoms may occur, nor can nutrition or

environment prevent CMT symptoms from even starting.

The when & severity of symptoms that occur is determined by how the

particular CMT gene acts, reacts and effects our individual neuromuscular

system.

One CANNOT put a stop to, know when the symptoms will occur, or

necessarily even lessen the severity of CMT symptoms based on the nutrients one

puts in their body or what kind of environment we surround ourselves with.

(Yet! But, hopefully in our lifetime!) If that were the case, I am sure many,

if not all, of us would have eaten all the " right " foods and made sure we were

taking all the correct vitamins & supplements to prevent CMT symptoms

from ever showing themselves, and we would all live in a peaceful, beautiful

place with a temperate, pleasant climate, if possible. Or, we would certainly

be putting only good nutrients in our body to put a stop to the symptoms we are

currently experiencing.

Of course, we certainly can TRY to lessen the severity of our CMT symptoms by

using good nutrition and improving the parts of our environment we can control.

But, sadly, neither nutrition nor environment are the do-all, fix-all, cure-all

answers. If only!!

In fact, I am a very positive person and a huge believer in good nutrition (and

prayer). I take tons of vitamins & supplements every day that I know are good

for me and may help relieve or slow my CMT symptoms & /or make me feel better,

and I try to avoid putting things in my body or doing things that can be harmful

to me or may worsen my CMT symptoms.

However, my disease is still progressing and will continue to, no matter what I

do, because that's what the CMT gene does. I am constantly doing my own

research & keep up with what could be the next " miracle nutrient " & could help

me, my mother, and others I know with CMT in any way, & I will continue to do

all the

good things I can for my body.

We can help alleviate some of our CMT SYMPTOMS, but THERE IS NO CURE FOR CMT

(YET!!)

, you also say: " If there's an illness then some kind of defieceincy caused

it. " This is only true for certain illness, not ALL, and NOT CMT. You cannot

put every illness on this earth into one single category caused by nutrient

deficiency. Again, if nutrient deficiency were the cause of all illnesses &

diseases, we here in the USA would more than likely be a society filled with

many more healthy people, I am sure.

We all need to keep ourselves educated & up to date on everything CMT & do

whatever we can do that is good for each of our individual selves. We need to

gather & share information that is helpful, which is what this site is for. We

all believe different things, but we cannot allow those beliefs that are not

based on facts to possibly influence someone that is naive or new to CMT in a

negative way. So, we need to be careful of what we say.

Again, I apologize for sounding offensive in any way, because I sure don't mean

to. I wish you and yours all the best.

Peace & Blessings,

Holly Waters

Corpus Christi, TX

[Guest guest]

In a message dated 4/27/2009 10:18:10 A.M. Pacific Daylight Time,

augold123@... writes:

However, though we don't see proper nutrition 'curing' CMT, I believe most

individuals who lead a healthy lifestyle can attest to the health

advantages.

I am very sure we can fill a state with people that will disagree. Disease knows

no boundaries.

[Guest guest]

Caroline -

Stress is what causes you to feel weaker. Hearing others argue is very stressful

and it causes wear and tear on your endocrine system. Stress causes various

chemicals in the body to go out of whack. Fighting with others expends more

energy, then you feel fatigued. The same chemicals cause the same

reaction...fatique and weakness.

I don't think it's an energy field, except that arguments can suck the life

right out of you!!

Stay calm, stay well.

[Guest guest]

Holly and others,

I am very sorry if I confused anyone. My beliefs have worked for me. When I eat

really wisely and exercise daily my CMT improves. The nutritionist I saw who was

with Professor Victor Ionasescu, MD, MDA appointed, about 20 years ago, told me

I could prevent, improve and prolong CMT symptoms. I took the info I received

literal and sure enough I improved. Not just a little, but a lot and I kept

myself stable for many years. The Dr. who told me it wasn't proven, but that

CMT was 100% hereditary, when I was carrying my daughter, another MDA

appointed Dr. was Dr. J. Chesser. I took the info

literal then too, combined the two together to keep my daughter as healthy as

could be and she's had no symptoms. I started to see signs ( slight tremor in

her hands and not being able to snap her fingers very good ) with her, which

prompted me to learn more about nutrients.

She's as strong as an ox now; ( no tremor and snaps fingers better ) really

athletic and one of the fastest runners in track. She also has more endurance

than the other girls on the team. I also believe because I was so focused on

her and thought I could be invincible, along with certain stressors this last

decade that

it made my CMT progress more than it should have.

I went from no cane to a cane then walker. This last year I have been able to

focus more on myself also and have went from walker back to cane in most

circumstances. The other day I walked a short distance without my cane. I

haven't been able to do that for five years. I am taking more steps to improve

and will keep you posted.

Again, very sorry. It just saddens me that a lot people think they are eating

healthy when they have synthetic in their chicken and pesticide in their grapes

and being prescribed dangerous drugs. Americans have been so under-informed and

mislead. That is why there is so many people in America walking around sick.

[Guest guest]

Please share the specific advice on lifestyle/ diet that you were given (should

you have the time).

I don't care if it's nature or nurture - My money is on whichever wins in the

end (or the not quite end).

________________________________

From: " CountryMom79@... " <CountryMom79@...>

Sent: Tuesday, April 28, 2009 1:42:02 PM

Subject: Re: Your Environment and CMT

Holly and others,

I am very sorry if I confused anyone. My beliefs have worked for me. When I eat

really wisely and exercise daily my CMT improves. The nutritionist I saw who was

with Professor Victor Ionasescu, MD, MDA appointed, about 20 years ago, told me

I could prevent, improve and prolong CMT symptoms. I took the info I received

literal and sure enough I improved. Not just a little, but a lot and I kept

myself stable for many years. The Dr. who told me it wasn't proven, but that

CMT was 100% hereditary, when I was carrying my daughter, another MDA

appointed Dr. was Dr. J. Chesser. I took the info

literal then too, combined the two together to keep my daughter as healthy as

could be and she's had no symptoms. I started to see signs ( slight tremor in

her hands and not being able to snap her fingers very good ) with her, which

prompted me to learn more about nutrients.

She's as strong as an ox now; ( no tremor and snaps fingers better ) really

athletic and one of the fastest runners in track. She also has more endurance

than the other girls on the team. I also believe because I was so focused on

her and thought I could be invincible, along with certain stressors this last

decade that

it made my CMT progress more than it should have.

I went from no cane to a cane then walker. This last year I have been able to

focus more on myself also and have went from walker back to cane in most

circumstances. The other day I walked a short distance without my cane. I

haven't been able to do that for five years. I am taking more steps to improve

and will keep you posted.

Again, very sorry. It just saddens me that a lot people think they are eating

healthy when they have synthetic in their chicken and pesticide in their grapes

and being prescribed dangerous drugs. Americans have been so under-informed and

mislead. That is why there is so many people in America walking around sick.

[Guest guest]

,

I know what you mean. When I was 9 years old my family lived in San Diego, CA

and the weather there being hot and dry seemed to be good for me. (I had lived

in Buffalo, NY before and after) but while I lived there, I ran faster than ever

and never really felt tired or tripped like I did when we moved back to Buffalo,

ny.

Dawn

[Guest guest]

Dawn,

There is definitely a difference. I grew up 70 miles up from San Diego, right

off the 15. I'm going out for a visit in June.I can't wait.

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