Re: welcome Pam

[Guest guest]

Welcome Pam!

I have been living with CMT now for 42 years. I would like to welcome you to

the group. My daughter was diagnosed with the disease as well. She does not

show signs at age 13, that I had when I was younger.

I knew when I was a kid something was different about me. I was a tom-boy

and all of a sudden was unable to do simple things. Like squatting and getting

up, riding a bike while standing up on my bike pedals, etc. But, I was told I

had CMT when I was in my twenties.

You can always write to us and also get in touch with your local Muscular

Dystrophy office because they help so much too.

Once again, welcome!

Love, Peace & Harmony,

Alyce

[Guest guest]

Welcome Pam!

I am living with CMT as well. I did have 20 different foot surgeries to

correct bunions and when the toes start to curve up.

For some bizarre reason my hips went out on me. I had a hip 5 years ago and

one due next month. Maybe I pushed myself too hard as a kid. I was always

active and maybe that is why my hips gave out.

Keep in touch with your local Muscular Dystrophy office (they really help)

and keep in touch with us too.

Love, Peace & Harmony,

Alyce

[Guest guest]

Welcome to the group Pam. There is alot of support here anad you arent alone

in this disease. I take Neurontin, Lodine and Tylenol Arthritis along with my

blood pressure meds. I would be concerned with viocodin as it is addictive.

Hang in there it sounds like you have alot on your plate.

in Oklahoma

[Guest guest]

Hi Terry,

Thanks for the welcome! It must be a very busy time for ye now with the

graduation and wedding so close!I can't imagine how scary it must have been to

get told that diagnoses when ye only just had her. You sound like a very strong

person who has helped her adjust brilliantly so far and will be there to support

them whatever they decide to do!

Good luck to Jess and her fiance on their wedding day and tell them to make sure

they enjoy the day and try and spend some time together on the big day!!

Pam

--- In blepharophimosis , Terry Helgestad <terryahelge@...>

wrote:

>

> Dear Pam,

>      Welcome and a big " hello " from Edgerton, Wisconsin,  USA.   My name is

Terry and my daughter, , is the first in our family to have BPES.  You

can check out some pics of her under Jess (they're a bit dated and in need of

new updated ones with her fiance).  She is 24 and is getting married in August. 

She does not know which type she has.  But when she was diagnosed at the age of

2 months, her specialist told us right up front about the possibility of her

having infertility problems.  Quite a tough prospect to swallow when you're

holding your little baby girl and all you want for her is to grow up happy and

healthy with nothing to worry about.  She will be graduating from college on May

15th!  She will be earning a B.S. degree in English education.  Her

husband-to-be is 30 and they have talked about waiting to start a family.  I

have gently tried to encourage her that she shouldn't wait too long because of

the possible

> chance she may have POF and not even know it.  Her periods are sometimes

sketchy (not always normal).  I was 20 when I had her older brother, 22 with her

and 25 with her youngest brother (the boys do not have BPES).  She loves

children so much.  Whatever her decision, I pray that she is happy. 

>      Good luck to you, Pam.  You are a beautiful young woman (I checked out

your pics) and I will be praying for you.  God Bless.

>

> Sincerely,

> Terry ('s mom)

>