Partners

[Guest guest]

Christie - This condition IS stressful and is very hard on those close to you

as well. I do have an extremely understanding partner as he often is the

brunt of my frustration on bad days. I have found though that the most

important thing with this condition is you must communicate your needs to

those closest to you. If you can't do something without pain, ask for help.

But if you can do and they insist on helping, thank them but tell them to

back off - that you want to do it yourself. Also, make a point of telling

them when you do something or say something nasty to them (who me?!?) that it

is the frustration of the disease - NOT THEM - that you are angry with. If

they love you, they will understand and hang in there with you in both good

times and bad.

Good luck - I know there is someone special out there for you to love you and

help you through the bad times and share your joy through the good times -

[Guest guest]

hi -

Where did you ever find such a caring and understanding man?

You are very lucky!! Does he have any brothers?? Let me know!!

(You too- in Mass-your hubby sounds great!)

I can't say I've had such luck... my last two long term relationships (4

years and one year, respectively) ended

because they couldn't deal with the day-to-day effects of the PA... they

both said it just became too hard watching me struggle everyday with the

most minor things.. getting out of bed, shopping, doing household chores....

They were supportive and helped when they could (or when I would let

them, although I tried not to ask too much-I didn't want to be a burden on

them) but after a few months, realized they could't live like that....

I can't say I blame them...none of us choose to deal with this....and I

guess I'm most lucky that I found out before we got married/had kids,

etc...that would only make things more complicated...

I guess I'm just wondering how many of you have dealt with the issues of

finding/keeping a partner in spite of the PA..

Anyone we spend a lot of time with can't help but go through much of this as

well, and I know it's stressful...

Any experiences/suggestions/ideas??

Thanks...Christie

[Guest guest]

Hi Folks

My name is Fiona, I live in Glasgow, Scotland, although I'm Northern

Irish by birth, I'm now 41. I've had CMT from what feels like the

beginning of time but was only diagnosed 8 years ago. Its only been

within the last few months when started to have (real) problems that

I

had my GP refer me to a specialist. It was at that time that I

discovered the group and found out a lot more what about the

condition. I still haven't had the results of the genetic testing

back and so we still don't know the type yet.

I tried to join the group (I think) way back then and failed

miserably - nothing to do with CMT that I'm not the most technology-

savvy folks on the earth, but I've persevered and got here.

Its been so good reading a lot of the posts - knowing that you're not

on your own but empathizing with so many of the problems that people

are experiencing and sympathising. I have a fantastic partner who is

so competent and considerate. He may not understand in the way that

you understand unless you experience something for yourself but he

gives me leeway.

Gretchen, the effort you put into this is wonderful; thanks for

creating such an informative website

Fiona

[Guest guest]

Welcome Fiona! Glad you were able to join this time!

Elaina/NY

[Guest guest]

Eve,

While I did not have small children home, preparing a spouse for this

is a must. My husband has never had any type of surgery, nor has he

ever been in a hospital for longer than a colonoscopy! He also was

and is not very self-sufficient. First, you MUST take him with you

to the doctor's office for your pre-op visit; second, tune him into

this site. I printed and had my husband read some of the members'

stories and showed him the x-ray pictures which really had an

impact.

With small children you will definitely need help. I don't know your

husband's work schedule, but I assume he plans on going back to work

at some point and you will not be able to handle 3 small children by

yourself for quite awhile. You will not be able to bend and lift

anything, let alone a child and/or their toys, etc.

If you do not get a response from someone on this site, maybe you can

ask your doctor for a former patient in a similar situation that you

can contact.

Good luck and know that you must be the priority after surgery so

that you can heal properly. It takes time, but is well worth the

effort!

Donna T.

>

> Hello everyone and happy holidays,

> I am getting ready to have surgery with Dr. Bridwell in less than a

month. I'm trying to prepare, listening to the CD and doing the

exercises he suggested, etc. My question is whether one of you has a

partner who might be willing to talk to mine about what the surgery

was really like -- and more important, about the recovery period. My

husband has never been in a hospital, taken care of someone, or dealt

with this kind of thing before, and he hasn't read anything about it

or paid much attention to the details. We have 3 kids, ages 5, 8,

and 10, and he thinks he can take care of them, me, the house, and it

will be no problem, and he won't consider getting help. I want to at

least prepare him for what it will be like, how out of it I will be

afterwards, the kinds of things I won't be able to do around the

house or with the kids, how long before I am " normal " again... What

did you all do to prepare your partners? Anyone want to talk to mine?

> Thanks so much, and I hope everyone has a healthy and joyous 2009 --

> Eve

>

[Guest guest]

Eve,

Myself and my family can help you, as I do similar talking to patients of my surgeon. Here is my personal E-mail and you can contact me there to trade phone #'s and info, and of course you hubby and you could e-mail me if you prefer that method.

.Kirkaldie@...

Colorado Springs

[ ] partners

Hello everyone and happy holidays,I am getting ready to have surgery with Dr. Bridwell in less than a month. I'm trying to prepare, listening to the CD and doing the exercises he suggested, etc. My question is whether one of you has a partner who might be willing to talk to mine about what the surgery was really like -- and more important, about the recovery period. My husband has never been in a hospital, taken care of someone, or dealt with this kind of thing before, and he hasn't read anything about it or paid much attention to the details. We have 3 kids, ages 5, 8, and 10, and he thinks he can take care of them, me, the house, and it will be no problem, and he won't consider getting help. I want to at least prepare him for what it will be like, how out of it I will be afterwards, the kinds of things I won't be able to do around the house or with the kids, how long before I am "normal" again... What did you all do to prepare your partners? Anyone want to talk to mine?Thanks so much, and I hope everyone has a healthy and joyous 2009 --Eve