Hello

[Guest guest]

Steph...

Mine are 3.5 yrs old () and Aimee who is 16 months old.

Domi

----- Original Message -----

From: Todd Dunayer

Plagiocephaly

Sent: Tuesday, April 24, 2001 8:13 AM

Subject: Re: Hello

That sounds great, call me when your available @ 972-529-5294. How many kiddies do you have, i forgot. I have Loren the 11mon. and , she is 28 months

steph

----- Original Message -----

From: Dominika White

Plagiocephaly

Sent: Tuesday, April 24, 2001 10:08 AM

Subject: Re: Hello

Hey Steph and ...

I just wanted to chime in and say that I live in Plano! If anyone wants to get together let me know! We could meet at the outlet mall in maybe? Talk to y'all soon!

Domi

----- Original Message -----

From: Todd Dunayer

Plagiocephaly

Sent: Tuesday, April 24, 2001 7:45 AM

Subject: Re: Hello

Hey, where is Stonebridge Ranch? I take my girls all the way to walnut hill to see Dr. because I couldn't find one here in Mckinney! I would like to change to be closer. Do you really like Dr. Kessinger? My daughter Loren is 11 months and my other daughter, is 28 months.

steph

----- Original Message -----

From: Lemmons

Plagiocephaly

Sent: Monday, April 23, 2001 10:20 PM

Subject: Re: Hello

Hey, Steph!

We live in McKinney, too! We are in Stonebridge Ranch. Who is your pediatrician? We see Dr. Kessinger at Pediatric Healthcare Associates on Eldorado. He was really good about catching 's plagio and recommending the DOC band.

is 10 months and got his band 2 months ago. Call me if you want to get together sometime! 972-540-0079

(mommy to DOC band 3-9-01)

----- Original Message -----

From: Todd Dunayer

Plagiocephaly

Sent: Monday, April 23, 2001 7:55 PM

Subject: Re: Hello

Hi Vicki,

I live in Mckinney, TX how cool! When I read your e-mail, that was exactly how I felt. My daughter Loren is 11mon. and has been in a helmet since Dec. and now we are in the process of getting a second band. Loren's case is a little different because her clavical was broken during delivery and for the first couple of months, she would turn her head to one side only. It was weird because her face looked real flat on one side and the other was puffier ( cheek area ). I was sooo scared of what we were going through and didn't know anything about positional plagiocephaly/torticollis. Her head tilts slightly now and although, it's not as noticeable. Because I didn't know too much, I relied on the what the docs./technicians said. With 2 kids 17 months apart, didn't have alot of time to look up infor. on the internet. When she got the helmet at 7 mon., we were supposed to do neck exercises along with the helmet therapy and didn't for the first couple of months. I do it now as I am suppose to and tretching is suppose to help with the assyemetries. If I knew how important it was, I would have done all along. At first when I would take my 2 yr and Loren (with helmet) to the gym, I would take off the helmet. I hate that people stared at her. Their are some intelligent people with intelliegant questions and their are the ignorant. I had a tough time with it but it does get better. Since I didn't do the exercises, i have to do them now and her being 11 months old, she screams and doing them while they are little it's easier for you and your baby. Good luck with the research on torticollis and good luck with Collin.

steph mom of Loren &

----- Original Message -----

From: neus@...

Plagiocephaly

Sent: Monday, April 23, 2001 7:28 PM

Subject: Hello

My name is Vicki and my 3 m.o. son Collin was casted Thursday for a band. We started to notice asymmetry in his forehead around 8 weeks, but the doctor did not catch it at his 2 month checkup. I guess I need to do more research on torticollis. No one has mentioned that to me, but Collin does have a tendency to look left when he is on his back (of course that's how all this got started). He is my second child, so I feel really stupid not to have kept up better with how he was sleeping, but I wonder too how much I could have prevented.I am thankful that our doctor referred us right away when we brought it to his attention at 10 weeks. The longest wait has been to get into the craniofacial center here. It has been a month now since we started the process and although I don't want to see Collin in a band, I am anxious that it is taking so long to get started. I live near Dallas and am hoping and praying we can get done in the minimum time so we don't have to go through August and September in the band. (I noticed someone else here - ?)I came here from looking at the discussion board at CranialTech - we had no problem getting approved by United Health Care, maybe things have changed in the past month?I am really anxious about all the stares and stupid questions we are going to get. My first thought was I'm not leaving the house until it's off! I am getting over that now, I know it's a relatively short time in the grand scheme of things. I thank God for my healthy baby who is still perfect, if a little lopsided. :)I am looking forward to getting to know you and I will keep you updated on our progress. BTW, (sorry I don't know names yet) tell your friend to have her child evaluated, if they're a true friend they'll appreciate it.Vicki & Collin

[Guest guest]

Vicki, I am very happy for you ... that your

pediatrician noticed right away...my sons pediatrician

suggested that it will correct itself and my son is 7

months old already and I see no difference so I called

a specialist myself and made an appointment, inspite

of what my sons pediatrician thinks...I also took him

to another pediatrician and she also told me the same

thing, but that day in her office I picked up the

Apple Parents Magazine and saw an article on

plagio...I was surprised...I showed it to my

husband...we couldn't believe it...so I showed it to

my pediatrician and she said she never heard of

that...I wish I would have seen that article sooner...

--- Jaya Dong <angandjaya@...> wrote:

> Vicki,

>

> Welcome to the board! You are in good company here!

>

> You are not the only one with a second (or third or

> fourth) child

> that has Plagio. My 2nd daughter also had Plagio

> and just recently

> graduated from the DOC Band.

>

> It is wonderful that you are starting at such a

> young age! You

> should see very good improvement in a relatively

> short time frame.

>

> And don't worry about other people. It can be very

> hard at first -

> you notice EVERY person that stares. But as time

> goes on, you don't

> even see those people anymore. Your doing the right

> thing - getting

> treatment for your son - and that is all that

> matters! )

>

> Best of luck to you!

>

> Sincerely,

> Jaya Dong

> http://www.CAPPSkids.org

> Mom to Cheyenne (6/15/97) and

> i (6/19/00) DOC Banded 11/31/00-4/19/01

>

>

> > My name is Vicki and my 3 m.o. son Collin was

> casted Thursday for a

> > band. We started to notice asymmetry in his

> forehead around 8

> weeks,

> > but the doctor did not catch it at his 2 month

> checkup. I guess I

> > need to do more research on torticollis. No one

> has mentioned that

> > to me, but Collin does have a tendency to look

> left when he is on

> his

> > back (of course that's how all this got started).

> He is my second

> > child, so I feel really stupid not to have kept up

> better with how

> he

> > was sleeping, but I wonder too how much I could

> have prevented.

> >

> > I am thankful that our doctor referred us right

> away when we

> brought

> > it to his attention at 10 weeks. The longest wait

> has been to get

> > into the craniofacial center here. It has been a

> month now since

> we

> > started the process and although I don't want to

> see Collin in a

> > band, I am anxious that it is taking so long to

> get started. I

> live

> > near Dallas and am hoping and praying we can get

> done in the

> minimum

> > time so we don't have to go through August and

> September in the

> > band. (I noticed someone else here - ?)

> >

> > I came here from looking at the discussion board

> at CranialTech -

> we

> > had no problem getting approved by United Health

> Care, maybe things

> > have changed in the past month?

> >

> > I am really anxious about all the stares and

> stupid questions we

> are

> > going to get. My first thought was I'm not

> leaving the house until

> > it's off! I am getting over that now, I know it's

> a relatively

> short

> > time in the grand scheme of things. I thank God

> for my healthy

> baby

> > who is still perfect, if a little lopsided.

> >

> > I am looking forward to getting to know you and I

> will keep you

> > updated on our progress. BTW, (sorry I don't know

> names yet) tell

> > your friend to have her child evaluated, if

> they're a true friend

> > they'll appreciate it.

> >

> > Vicki & Collin

>

>

__________________________________________________

[Guest guest]

Welcome Vicki!

You are right on track! 3 mons. is a great time to start. You

should see results very quickly. My son has been in the band

for 2 months and I see a lot of improvement. We also live near

Dallas and go to the CT there. Where do you live? We're in

Greenville.

& DOC 2/23

> My name is Vicki and my 3 m.o. son Collin was casted Thursday for a

> band. We started to notice asymmetry in his forehead around 8

weeks,

> but the doctor did not catch it at his 2 month checkup. I guess I

> need to do more research on torticollis. No one has mentioned that

> to me, but Collin does have a tendency to look left when he is on

his

> back (of course that's how all this got started). He is my second

> child, so I feel really stupid not to have kept up better with how

he

> was sleeping, but I wonder too how much I could have prevented.

>

> I am thankful that our doctor referred us right away when we

brought

> it to his attention at 10 weeks. The longest wait has been to get

> into the craniofacial center here. It has been a month now since

we

> started the process and although I don't want to see Collin in a

> band, I am anxious that it is taking so long to get started. I

live

> near Dallas and am hoping and praying we can get done in the

minimum

> time so we don't have to go through August and September in the

> band. (I noticed someone else here - ?)

>

> I came here from looking at the discussion board at CranialTech -

we

> had no problem getting approved by United Health Care, maybe things

> have changed in the past month?

>

> I am really anxious about all the stares and stupid questions we

are

> going to get. My first thought was I'm not leaving the house until

> it's off! I am getting over that now, I know it's a relatively

short

> time in the grand scheme of things. I thank God for my healthy

baby

> who is still perfect, if a little lopsided.

>

> I am looking forward to getting to know you and I will keep you

> updated on our progress. BTW, (sorry I don't know names yet) tell

> your friend to have her child evaluated, if they're a true friend

> they'll appreciate it.

>

> Vicki & Collin

[Guest guest]

Hi and thanks for the warm welcome and encouragement. I only get on the

computer once or twice a day, so I'm getting the digest and may be slow to

respond to emails. We are still counting down the days until the band, and

my husband says the dr said Collin does not have tort. It will take me a

while to remember names and situations, so I'll just try to comment on what

I've read so far.

For those of you in the Dallas area - we are in Copper Canyon, which is

between Flower Mound and Denton, just west of Lake ville. Darn,

there's two things I'd like to go to that weekend in May, but won't be able to.

My older son was two in December, he was in NICU when he was born, so I

guess that my boys are just both going to give me trouble in the

beginning. I nursed Duncan for a year, which was all I planned on, and my

milk had dried up anyway. There is one mom in our local Moms club who

nursed for 2 1/2 years (she got pregnant and I don't know if that dried her

out or if she weaned), she recommended La Leche (laleche.org??). I hope I

won't have any problems adjusting to nursing Collin in the band - any

suggestions? I hope I can make it a year with him too. I am afraid he is

teething already - chewing on the fingers, drool running down the arm... I

am not ready for teeth! I think I will start feeding him cereal in another

month unless my dr really objects - Collin is in the 90th percentiles and

looks very interested when I'm eating in front of him.

That's all I can think of for now, like I said I will need some time to get

to know everyone. My phone is 940-455-2145, sorry it's long distance for

everyone I'm sure (Denton area code). I'm sure you've answered all this

before but I don't have time to read ALL the archives. I'll take any

suggestions on answering strangers' questions, decorating (or not), care of

band and baby. What's a typical day like for your child in the band?

Thanks again,

Vicki, mom to Duncan 12/18/98 and Collin 1/11/01 - band 4/27 we hope

[Guest guest]

I am also new to the group.....I am a carb addict, lol. Very hard for me to

stay on special diets longterm. The carb addict diet is the best I have ever

tried, maybe I can incorporate the two diets together. I especially am

interested in heart healthy.

Other than that I am a soapmaker, wife and grandmother of five. Hope to

learn from the list.

-

[Guest guest]

Mara-

Wow, we do have a lot in common. I'd love to hear more about your

progress etc. Today I'm having a hard time following any type of diet

routine b/c I feel nauseated( I think it may be allergies) Have you ever

thought about a cleansing fast? I thought that would be a great way to start

this type of program. Does anyone have any ideas as how to go about that? I

feel I need to cleanse my body of all the processed foods that I've consumed.

-B

[Guest guest]

Hi All,

Becky, We have a lot in common. I am also new to CR.

I'm 25 with a BA in French and Linguistics. I have

just been accepted to an RN program and am currently

knocking out my prerequisits (A & P may cause my head to

explode if I'm not careful). I'm also a serious junk

food addict (mainly chocolate with binges that mark my

hormone cycle.)

I have been slowly changing my diet to make sure I'm

getting proper nutrition (and losing a ton of weight

in the process...25lbs in 4 months) I'm having a hard

time slowing the weight loss. My doctor has advised me

to hold off on the calorie restriction part of the

diet because my husband and I want a child in a year

or two.

I have read Dr Walfords book and many many archives

and am still needing advise on maintaining my weight

and calorie intake while taking in all the nutrients.

If anyone can point me to the right resource I'd be

very greatful.

Thanks for all the great info I've already gotten from

this group.

Mara

--- bugnewberry@... wrote:

> Hi-

> I'm new member of the CR society and am very

> excited about learning more

> about the CR lifestyle. Let me tell you a little

> about myself: I'm a 24

> year stay-at-home mom currently working on my second

> degree(have B.S

> psychology & working towards my RN certification)

> I'm vegetarian(except

> seafood) and sometimes junk-food indulger. New

> research has shown that there

> may be a " sweet tooth gene " , if that's so I

> definatly have it. I would

> really like to break away from my cookie and cake

> binges. Any suggestions?

> I'm naturally slender at 5''7 and 120 lbs, so I

> think my CR weight should be

> around 115? I'm going to try the supreme veg salad

> tomorrow, it sounds

> delicious. I'd love any advice, encouragement or

> suggestions since my

> husband is not joining me in my diet overhaul.

> Thanks

> -Becky

>

__________________________________________________

[Guest guest]

> Hi All,

>

>

> I have read Dr Walfords book and many many archives

> and am still needing advise on maintaining my weight

> and calorie intake while taking in all the nutrients.

> If anyone can point me to the right resource I'd be

> very greatful.

>

> Thanks for all the great info I've already gotten from

> this group.

>

> Mara

Mara: increase your intake of the " healthy " fats: olive oil, avocado

or nuts! You'll have no trouble maintaining your weight. When you

want to start losing again, decrease the fats' however include a small

amt in your diet even when in the " losing " phase.

[Guest guest]

> Mara-

> Wow, we do have a lot in common. I'd love to hear more about your

> progress etc. Today I'm having a hard time following any type of diet

> routine b/c I feel nauseated( I think it may be allergies) Have you ever

> thought about a cleansing fast? I thought that would be a great way to start

> this type of program. Does anyone have any ideas as how to go about that? I

> feel I need to cleanse my body of all the processed foods that I've consumed.

>

> -B

Warren of the main group is the " fast " expert. He posts just

about every day so you can either get his private e-mail from his post

(and he is very helpful) or ask him publicly with a post to the main

group.

[Guest guest]

Thank You!! Avocados are one of my favorite foods.

I'll give it a try.

--- fskelton@... wrote:

>

> > Hi All,

> >

> >

> > I have read Dr Walfords book and many many

> archives

> > and am still needing advise on maintaining my

> weight

> > and calorie intake while taking in all the

> nutrients.

> > If anyone can point me to the right resource I'd

> be

> > very greatful.

> >

> > Thanks for all the great info I've already gotten

> from

> > this group.

> >

> > Mara

>

> Mara: increase your intake of the " healthy " fats:

> olive oil, avocado

> or nuts! You'll have no trouble maintaining your

> weight. When you

> want to start losing again, decrease the fats'

> however include a small

> amt in your diet even when in the " losing " phase.

>

>

>

__________________________________________________

[Guest guest]

Hi ,

I don't see the problem with carbos, since Walford's diet is 76/12/12 C/P/F.

Regards.

----- Original Message -----

From: <vpat@...>

< >

Sent: Monday, May 14, 2001 10:52 PM

Subject: Re: [ ] Hello

> I am also new to the group.....I am a carb addict, lol. Very hard for me

to

> stay on special diets longterm. The carb addict diet is the best I have

ever

> tried, maybe I can incorporate the two diets together. I especially am

> interested in heart healthy.

> Other than that I am a soapmaker, wife and grandmother of five. Hope to

> learn from the list.

>

> -

>

>

>

[Guest guest]

Im hoping that Waren or someone with some degree of knowledge on

fasting could help me. I would like to cleanse my system out with a period

of fasting. Are there certain herbs, teas or supplements I should take? How

about uping my fiber intake? How long? I don't think I could manage more

than 3 days. Any suggestions would be helpful

[Guest guest]

And I feel a lot better source of mono fat, because it has not been

processed in any way. It looks much like olive oil in fatty acid content.

regards.

----- Original Message -----

From: Mara <marakamal@...>

< >

Sent: Tuesday, May 15, 2001 4:47 PM

Subject: Re: [ ] Re: Hello

> Thank You!! Avocados are one of my favorite foods.

> I'll give it a try.

>

> --- fskelton@... wrote:

> >

> > > Hi All,

> > >

> > >

> > > I have read Dr Walfords book and many many

> > archives

> > > and am still needing advise on maintaining my

> > weight

> > > and calorie intake while taking in all the

> > nutrients.

> > > If anyone can point me to the right resource I'd

> > be

> > > very greatful.

> > >

> > > Thanks for all the great info I've already gotten

> > from

> > > this group.

> > >

> > > Mara

> >

> > Mara: increase your intake of the " healthy " fats:

> > olive oil, avocado

> > or nuts! You'll have no trouble maintaining your

> > weight. When you

> > want to start losing again, decrease the fats'

> > however include a small

> > amt in your diet even when in the " losing " phase.

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

,

Lamar here,

Welcome to the group. You will learn a lot from it. I am at least the

fourth generation in my family with CMT, and live in Southwest GA. I had

very few symptoms until my 40's and then it has progressed rapidly. Now at

53, I can still walk short distances with a cane or walker but it is VERY

limited. I also have a LOT of fatigue. Living alone, it makes for drastic

lifestyle changes.

As to the type, you would have the same type as your father, but many are

difficult to classify. New types are found yearly. (I think the current

count is in the 50's) So far they have not classified what type is in my

family. Available DNA testing is neg. NCV indicates type 2, biopsy

indicates type 1...LOL

I had to retire from my profession as psychiatric RN about 4 years ago due

to my CMT. Thankfully after 30 years I had a decent retirement.

I have learned a lot from this list and am sure you will also. There is

also a lot of support here. Again, let me welcome you.

----- Original Message -----

From: sarahlabara@...

Sent: Tuesday, May 22, 2001 03:08 PM

Subject: [] hello

Hi, my name is and I was diagnosed with CMT when I was 4 years

old (I'm 24 now). I am not sure what type I have. My father has CMT,

but his case is not as severe as mine. One doctor told us that I had

Type 1 and that my father had type 2, another said that we were both

type 2, and another said that he wasn't sure which type we were! It's

frustrating to say the least and I don't have much faith in doctors.

I've had 4 surgeries: 2 biopsies, and 2 ankle fusions. I've been

wearing AFOs on both legs since the age of 4 (my father doesn't need

braces). I've also developed arthritis in my right foot and am taking

Celebrex. I was surprised to learn that fatigue was common for

CMT'ers, that explains a lot. I always thought that I had Chronic

Fatigue Syndrome and was often told that I was lazy and sleep too

much. The problem is that I often feel like I have no energy

whatsoever. My physical limitations have increased over the last few

years. When I was younger, I was pretty active, and I enjoyed

swimming, bike-riding, walking, etc. Going up and down stairs was a

chore, but I still did it. These days, I cannot walk without a cane,

going up and down stairs has become very, very, difficult. If there

is no hand-rail, well, then forget it! Stepping up onto the sidewalk

was not a problem, but today, I need to lean on someone to step up

onto the sidewalk.

My lifestyle has become less active, and I really hate that!! I know

that I need to take charge, but right now I just don't have the fight

in me. I want to enjoy life again...

I am happy to find this list. I've never met anyone with CMT other

then my father.

ciao!

[Guest guest]

Welcome aboard .

BC

----- Original Message -----

From: <sarahlabara@...>

< >

Sent: Tuesday, May 22, 2001 12:08 PM

Subject: [] hello

> Hi, my name is and I was diagnosed with CMT when I was 4 years

> old (I'm 24 now). I am not sure what type I have. My father has CMT,

> but his case is not as severe as mine. One doctor told us that I had

> Type 1 and that my father had type 2, another said that we were both

> type 2, and another said that he wasn't sure which type we were! It's

> frustrating to say the least and I don't have much faith in doctors.

> I've had 4 surgeries: 2 biopsies, and 2 ankle fusions. I've been

> wearing AFOs on both legs since the age of 4 (my father doesn't need

> braces). I've also developed arthritis in my right foot and am taking

> Celebrex. I was surprised to learn that fatigue was common for

> CMT'ers, that explains a lot. I always thought that I had Chronic

> Fatigue Syndrome and was often told that I was lazy and sleep too

> much. The problem is that I often feel like I have no energy

> whatsoever. My physical limitations have increased over the last few

> years. When I was younger, I was pretty active, and I enjoyed

> swimming, bike-riding, walking, etc. Going up and down stairs was a

> chore, but I still did it. These days, I cannot walk without a cane,

> going up and down stairs has become very, very, difficult. If there

> is no hand-rail, well, then forget it! Stepping up onto the sidewalk

> was not a problem, but today, I need to lean on someone to step up

> onto the sidewalk.

> My lifestyle has become less active, and I really hate that!! I know

> that I need to take charge, but right now I just don't have the fight

> in me. I want to enjoy life again...

>

> I am happy to find this list. I've never met anyone with CMT other

> then my father.

>

> ciao!

>

>

>

>

>

[Guest guest]

-----Original Message-----

From: sarahlabara@... <sarahlabara@...>

< >

Date: Tuesday, May 22, 2001 2:03 PM

Subject: [] hello

>Hi , Welcome to the list! Its frustrating losing abilites day by

day. Some progress fast others very slow or none at all. Just because you

have progressed to the point you are now does not mean that you will

progress any further at the same rate. You may stable off for years so

don't be discouraged. Its hard I know, but we have to take our life with

CMT day by day. This is a great group of people here and we are glad you

found us! Any other family members besides you dad have signs of CMT? My

dad didn't have any problems until after age 60 then it was fast

progressing. It showed up in me about 4 years ago, (had signs all my life

un-noticed) I will be 50 tomarrow. And I have progressed further then he

did. I wear full leg braces, have lost muscles in my feet, legs, thighs,

shoulders, arms, hands, neck, even my fanny! And have atrophy on the right

side of my throat which is causing problems swallowing, choking, and speech.

Have lost some hearing in my right ear. All this in 4 years. And others

have not progressed at all, we are all so different, ~>Becky M.

>Hi, my name is and I was diagnosed with CMT when I was 4 years

>old (I'm 24 now). I am not sure what type I have. My father has CMT,

>but his case is not as severe as mine. One doctor told us that I had

>Type 1 and that my father had type 2, another said that we were both

>type 2, and another said that he wasn't sure which type we were! It's

>frustrating to say the least and I don't have much faith in doctors.

>I've had 4 surgeries: 2 biopsies, and 2 ankle fusions. I've been

>wearing AFOs on both legs since the age of 4 (my father doesn't need

>braces). I've also developed arthritis in my right foot and am taking

>Celebrex. I was surprised to learn that fatigue was common for

>CMT'ers, that explains a lot. I always thought that I had Chronic

>Fatigue Syndrome and was often told that I was lazy and sleep too

>much. The problem is that I often feel like I have no energy

>whatsoever. My physical limitations have increased over the last few

>years. When I was younger, I was pretty active, and I enjoyed

>swimming, bike-riding, walking, etc. Going up and down stairs was a

>chore, but I still did it. These days, I cannot walk without a cane,

>going up and down stairs has become very, very, difficult. If there

>is no hand-rail, well, then forget it! Stepping up onto the sidewalk

>was not a problem, but today, I need to lean on someone to step up

>onto the sidewalk.

>My lifestyle has become less active, and I really hate that!! I know

>that I need to take charge, but right now I just don't have the fight

>in me. I want to enjoy life again...

>

>I am happy to find this list. I've never met anyone with CMT other

>then my father.

>

>ciao!

>

>

>

>

>

[Guest guest]

hi and welcome to .

Med Venlig Hilsen

Dennis Overskov

D.O@...

http://www.micropage.dk

[Guest guest]

HI , Steps, curbs and stairs are almost impossible with ankle fusion. I

believe that with ankle fusion we also loose thigh muscle too.

have you ever tried taking Iron tablets? Maybe that will help just a

bit with your fatigue. Where do you live?

I am 33 my name is .

[Guest guest]

HI Again and list, I had ankel fusion on one foot when I was 7 and the

other at 19. I didn't have to wear any AFO's after the surgery. All tho now I

could use one now on the foot done at 7.

I wonder why some people need AFOS after fusion and some do not?

jenny

[Guest guest]

Hello ,

My name is Patti and I am deaf . I am 59 years old .

I had a difficult time to step on the curb where I park my

car in front of my house . Finally I called the city and asked

for the help . They put the post by the curb that helps me

to pick myself up . That was about four years ago . When the

winter comes , I see the people hanging on to the post because

of ice and snow . The post is very handy and I love it .

Patti

________________________________________________________________

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[Guest guest]

Hello! Thank you very much for the warm welcome! I'm so glad to have

found you all

> Hi, my name is and I was diagnosed with CMT when I was 4

years

> old (I'm 24 now). I am not sure what type I have. My father has

CMT,

> but his case is not as severe as mine. One doctor told us that I

had

> Type 1 and that my father had type 2, another said that we were

both

> type 2, and another said that he wasn't sure which type we were!

It's

> frustrating to say the least and I don't have much faith in

doctors.

> I've had 4 surgeries: 2 biopsies, and 2 ankle fusions. I've been

> wearing AFOs on both legs since the age of 4 (my father doesn't

need

> braces). I've also developed arthritis in my right foot and am

taking

> Celebrex. I was surprised to learn that fatigue was common for

> CMT'ers, that explains a lot. I always thought that I had Chronic

> Fatigue Syndrome and was often told that I was lazy and sleep too

> much. The problem is that I often feel like I have no energy

> whatsoever. My physical limitations have increased over the last

few

> years. When I was younger, I was pretty active, and I enjoyed

> swimming, bike-riding, walking, etc. Going up and down stairs was a

> chore, but I still did it. These days, I cannot walk without a

cane,

> going up and down stairs has become very, very, difficult. If there

> is no hand-rail, well, then forget it! Stepping up onto the

sidewalk

> was not a problem, but today, I need to lean on someone to step up

> onto the sidewalk.

> My lifestyle has become less active, and I really hate that!! I

know

> that I need to take charge, but right now I just don't have the

fight

> in me. I want to enjoy life again...

>

> I am happy to find this list. I've never met anyone with CMT other

> then my father.

>

> ciao!

>

>

[Guest guest]

Hi ,

you are right, steps, curbs, and stairs are almost impossible after

someone gets their ankles fused. I had both of my ankles fused when I

was 17. The right ankle had to be re-done because I broke my foot and

the screws in my ankle came loose (not to mention the ones in my

head..hehe). The reason why I decided to have the surgery was because

the orthopedic surgeon said that if the procedure was successful, I

wouldn't need to wear leg braces anymore... Wrong! Not only am I

still wearing leg braces, but my ability to climb stairs, curbs, etc

has decreased dramatically. Buying shoes also became a pain in the

butt after my surgery. Before the surgery I was able to wear running

shoes, canvas shoes (i.e. KEDS), dress shoes with a VERY low heel,

etc. Now, I am only able to wear running shoes because it is hard to

walk with the canvas shoes (because of lack of support in the soles),

and the dress shoes that I was able to wear before surgery are now

out of the question because I have a hard time standing in them, much

less walking in them. I feel like I'm leaning forward when I try them

on...lol...oh well.

Iron tablets sounds like a very good idea. I need to start taking

Calcium tablets as well.

I live in Montreal, Canada

> HI , Steps, curbs and stairs are almost impossible with ankle

fusion. I

> believe that with ankle fusion we also loose thigh muscle too.

> have you ever tried taking Iron tablets? Maybe that will help

just a

> bit with your fatigue. Where do you live?

> I am 33 my name is .

[Guest guest]

Hi Becky,

My mom and siblings are not affected. No one on my mom or dad's side

of the family is affected. It's just dad and I.

>

> -----Original Message-----

> From: sarahlabara@y... <sarahlabara@y...>

> @y... <@y...>

> Date: Tuesday, May 22, 2001 2:03 PM

> Subject: [] hello

>

>

> >Hi , Welcome to the list! Its frustrating losing

abilites day by

> day. Some progress fast others very slow or none at all. Just

because you

> have progressed to the point you are now does not mean that you will

> progress any further at the same rate. You may stable off for

years so

> don't be discouraged. Its hard I know, but we have to take our

life with

> CMT day by day. This is a great group of people here and we are

glad you

> found us! Any other family members besides you dad have signs of

CMT? My

> dad didn't have any problems until after age 60 then it was fast

> progressing. It showed up in me about 4 years ago, (had signs all

my life

> un-noticed) I will be 50 tomarrow. And I have progressed further

then he

> did. I wear full leg braces, have lost muscles in my feet, legs,

thighs,

> shoulders, arms, hands, neck, even my fanny! And have atrophy on

the right

> side of my throat which is causing problems swallowing, choking,

and speech.

> Have lost some hearing in my right ear. All this in 4 years. And

others

> have not progressed at all, we are all so different, ~>Becky M.

>

> >Hi, my name is and I was diagnosed with CMT when I was 4

years

> >old (I'm 24 now). I am not sure what type I have. My father has

CMT,

> >but his case is not as severe as mine. One doctor told us that I

had

> >Type 1 and that my father had type 2, another said that we were

both

> >type 2, and another said that he wasn't sure which type we were!

It's

> >frustrating to say the least and I don't have much faith in

doctors.

> >I've had 4 surgeries: 2 biopsies, and 2 ankle fusions. I've been

> >wearing AFOs on both legs since the age of 4 (my father doesn't

need

> >braces). I've also developed arthritis in my right foot and am

taking

> >Celebrex. I was surprised to learn that fatigue was common for

> >CMT'ers, that explains a lot. I always thought that I had Chronic

> >Fatigue Syndrome and was often told that I was lazy and sleep too

> >much. The problem is that I often feel like I have no energy

> >whatsoever. My physical limitations have increased over the last

few

> >years. When I was younger, I was pretty active, and I enjoyed

> >swimming, bike-riding, walking, etc. Going up and down stairs was a

> >chore, but I still did it. These days, I cannot walk without a

cane,

> >going up and down stairs has become very, very, difficult. If there

> >is no hand-rail, well, then forget it! Stepping up onto the

sidewalk

> >was not a problem, but today, I need to lean on someone to step up

> >onto the sidewalk.

> >My lifestyle has become less active, and I really hate that!! I

know

> >that I need to take charge, but right now I just don't have the

fight

> >in me. I want to enjoy life again...

> >

> >I am happy to find this list. I've never met anyone with CMT other

> >then my father.

> >

> >ciao!

> >

> >

> >

> >

> >

[Guest guest]

Patti,

They would probably make a curb cut ramp if you ask and it will benefit you

and may even put up a handicapped sign if you have a problem getting " your "

place.

----- Original Message -----

From: pattipeterson@...

Sent: Wednesday, May 23, 2001 01:59 AM

Subject: [] Re: hello

Hello ,

My name is Patti and I am deaf . I am 59 years old .

I had a difficult time to step on the curb where I park my

car in front of my house . Finally I called the city and asked

for the help . They put the post by the curb that helps me

to pick myself up . That was about four years ago . When the

winter comes , I see the people hanging on to the post because

of ice and snow . The post is very handy and I love it .

Patti

________________________________________________________________

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Juno offers FREE or PREMIUM Internet access for less!

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[Guest guest]

Hello Lamar ,

The city said that the curb cut ramp was not long enough to the

sidewalk.

The ramp was too deep ... not good for snow and ice . I have been

thinking

about getting the handicapped sign . Thanks for the advice .

Patti

________________________________________________________________

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