-- Re: has anyone gone through this?

[Guest guest]

Hi ,

What a lucky guy your bf is to have you there to support him. Doctors

dont know everything. I took care a little girl named (strong

type 1, weak type 2)(www.our-sma-angels.com/) The agency who

hired me to take care of her told me she only had a month to live. I

got to her house and no way did she look or act like a child about to

go play on God's team. She lived 26 months and her quality of life

for that time frame was awesome. I never treated her as a client with

handicaps. Even now, 6 years after passed away, 's life

is touching other people's lives and certainly has never stopped

enhancing mine. I am blessed and honored to have been a part of her

life and she a part of mine.

Never say never.

I was told I wouldnt be able to handle being a college student and I

should look for a trade or go be a nurse. I would like to see the

silly guidance counselor get thru some of the exams I had to get thru

to be a nurse-why he thought nursing school would be easier than

college is beyond me. I would love to talk to him now -- I have a BS

in psych and a masters in education. I have been a nurse for 26

years.

Some of my mottos are -- Dare to be different, dont let other

people's expectations of you define who you are and never ever give

up. The path may not be smooth but the ride is so worth it.

So if your bf wants to find a company that will let him work from

home at his own pace, he can do that. Maybe he can create his own

company. Keep your own goals in mind also. Maybe he will gather

strength from your example. If he wants he can email me -- I would

love to talk to him. (Sheggy@...)or you can pass on what I said

here. Either one is ok with me.

Hope things go well.

I also like the saying -- how can I soar with the eagles when I work

with so many turkeys... LOL

So dont let the " doomsday doctors " rule--im told some of the best

inventions have come from people who didnt finish school-or were told

they wouldnt amount to much.

Thanks for listening -

hugs

Peg

Its something unpredictable but in the end its right. I hope you had

the time of your life--Greenday

> I was just wondering if anyone here has had the unfortunate

> experience of having doctors or school personell or anyone involved

> in your life as a young child, or for those of you who are parents,

> in your child's life, get to feel like since you are diagnosed with

> your condition that you should not bother trying to lead a " normal "

> life. That you will never amount to anything in the future, that

you

> will eventually be bound to a chair and not be able to do anything.

>

> I have been talking to my boyfriend and some of his friends and

> family here lately and have learned that this was the case in his

> situation. In school the teachers never bothered to focus their

help

> toward him. In high school he was put into the " special " classes

> becasue no one really wanted to work with him on his learning

> disabilities that go hand in hand with MD. They all kept

emphasizing

> the fact that one day he would be in a chair and would spend the

> rest of his life in it, and would not be able to have a job. He has

> ever since then had this mindset that he is useless since he is in

a

> chair. He blew off school since he " knew " he would never be able to

> work. I guess once he was even told that he would never amount to

> much of anything to anyone so he shouldn't put his " heart " out

> there.

>

> His general family doctors after the diagnoses convencied his

> parents that since he would be bound to a chair one day he didn't

> really need much treatment. Even now, with his back pain he jsut

> began having, the doctors are blowing it off since he is in a

chair.

> They just say it goes with the MD, deal with the pain. They

wouldn't

> even send records to MD over the Xrays they took. Because they are

> medical personnel his family believes them and is refusing

to " fight

> the system " .

>

> Maybe it is something to do with rural areas, who knows. But what

> can be done to " counteract " all the negative thoughts and actions.

> It tears me up to see him and his family in the mindset that they

> are in. I admit since i came into my boyfriends life, he has

> improved. He is even back in college, and trying. He would like to

> try to get a job in the computer aided drafting market. He feels

> like if he could get an employer to allow him to work from home,

and

> work at his own pace that that is something he could do. And it is.

> At least from what I have seen discussed about SMA, most people

with

> type III will still have enough strength to move their fingers to

> use a computer.

>

> What can I do? Is there some research that I can show them. Is

there

> someone out there who would be interested in " chatting " with him IF

> I could get him to realize there is more out there than his doctors

> are letting on.

>

> Someone please offer support! I am going insane, and so much in

love

> that I can't stand to see this negativity.

>

> Thanks,

>