Re: SUSIE, and others Judy's post

[Guest guest]

I'm Sorry Susie, I missed your original post. WOW, you're aunt sounds a

lot like mine - a serious 'ignorance' of the disease. My aunt lives in

the same trailor park as my mom and without me around, there wasn't

really anyone to 'take care' of my mom - my brother lives 3 miles away,

but he is sooooooo unreliable. About 6 months ago, maybe less, when my

mom got a bone infection that resulted from her brace causing a wound

down to the bone that would not heal, she was hospitalized and had a

part of her foot amputated to get rid of the infection. They sent her

home and she was still feeling sick, one night she called her sister, my

aunt, and said she really needed to go to the ER. My aunt was VERY

reluctant to take her - it was very late and she had to work the next

day - The doctors said that if my mom would have stayed home, went to

sleep - she would have died. WEll, that woke up my Aunt Big Time! Now my

mom lives with her sister, my aunt. However, my aunt called me, 'TELLIMG

ME " not to tell my mom what she was going to say. In essence, she said

ther my mom could stay with her (my mom pays rent, utilities,food, etc.

- basically she pays for everything, so it's not like my aunt is

supporting her) but when she called me , she said that " my mom could

'stay' with her UNTIIL she needed assistance or help. " She said she

wanted to 'warn' methat I better be prepared to take care of her when

she needs 'care.' What a witch! OF COURSE I WILL BE THERE to take care

of my mom when she needs me, I just thought it was the rudest thing,

especially considering I LIVE 3000 miles AWAY! I have a REALLY screwed

up family -lol on BOTH sides I can't figure out why I turned out to

be semi-normal, oh wait I know why, I left home at 17 to go to college

and eventually moved to the otherside of the country -lol

You are fortunate that you have children. Blessed may be more accurate.

I DID have my tubes tied after I received the rediagnosis of DSS. This

was MY decision. My hope was to adopt a child who really needed a home

and stop the 'bad' gene in our family. Unfortunately, although I am

completely independent, even though I was declared 'totally disabled' in

1992 -ish, by Social Security and my doctor's don't want me to work for

fear of excellerating my condition, which I know I am doing, I can't be

that person - that person who's mind still functions, but doesn't work.

However, A.) I am still single and B.) I am NOT financially stable

enough to adopt -YET! Hey I'm only 36, well 37 in 21 days - or rather, I

will be celebrating the 7th anniversary of my 30th birthday on January

18th - lol!

You said you were new, I'd like to share with you an article the MDA

wrote about me as a filmmaker with a disability.

The DIRECT LINK is: http://www.mdausa.org/news/011212Piersol.html

I hope you enjoy it. I revealed things to this wonderful reporter that I

had NEVER revealed to anyone.

Please, feel free to email me if you ever need an ear - I'm always here!

Peace & Love

Judy g.

stronggirl2@...

Susie Lemin wrote:

> No, no, no, Judy dear,

>

> You didn't say that, It was my reply about what my

> Aunt told me about the disease that was handed down

> for 8 generations. I am sorry for the confusion too.

> CMT has affected the men in our family severaly, if

> the women had it, it didn't show up till later and was

> chalked up as rheaumatism or arteritis. Like my self.

> CMt was not identified as what was causing the

> ailment until about 1965 after first being diagnosed

> as Frederich's Ataxia in 1961 and that was only 3

> generations back.

>

> It was my Aunt that told me only the men had it, and

> How WRONG she was. She wanted all of Daddy's

> daughters sterlized to keep us from giving it to our

> sons. I seen my son suffering and wondered if she was

> right about that, But THANK GOD my mother didn't

> listen to her. I don't know that I could have gone

> through life without my 4 children (brats that they

> are,LOL) So far I am the only daughter that is showing

> signs of it at age 55, the other girls are 8 and 12

> years my junior.

>

> Later, it is hard to type in the mornings.

>

>

> Susie

> --- Judy Piersol <stronggirl2@...> wrote:

> > HI ALL, Judy g here. I need to claify something VERY

> > important. I

> > re-read my post to Jim and I NEVER said that it

> > affects ONLY MEN. I'm

> > sorry if anyone misunderstood that, but I couln't

> > find it in the message

> > I wrote. If I somehow implied it, I apologize. CMT

> > can affect ANYONE,

> > regardless of gender, race, etc.

> > I just needed to claify that.

> > Peace & Love

> > Judy g.

> >

> > Sue Horder-Mason wrote:

> >

> > > Susie you weren't wrong it was your Aunt who was

> > wrong you just

> > > passed on incorrect information. But please urge

> > your family to go and

> > > see the doctor. CMT DOES affect both men and women

> > and also every

> > > race.

> > > If not for themselves but for their children and

> > grandchildren it is

> > > so important so many innocent people have suffered

> > needlessly because

> > > of a lack of diagnosis and the only way to stop

> > this is for families

> > > to have it recorded in their histories.

> > > is fighting CMT on every front and this

> > includes people with it

> > > getting diagnosed to be taken seriously the

> > medical profession need to

> > > know just how common it is.

> > > Love

> > > Sue

> > > The important thing is never to stop questioning.

> > > Website www.horder-mason.freeserve.co.uk

> > > Freelance Writer and CMTer

> > >

> > > " I Thank God for my handicaps, for through them, I

> > have found myself,

> > > my work, and my God. " - Helen Keller

> > >

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

> > > From: Susie Lemin

> > >

> > > Sent: Thursday, December 27, 2001 1:52 PM

> > > Subject: Re: [] Judy's post

> > >

> > >

> > > Hello, Judy

> > >

> > > I have been with the group only a couple of

> > weeks or

> > > maybe less and am getting a good education.

> > Could you

> > > explain to me what D.S. is?

> > >

> > > I think I have mentioned a few times that my Mom

> > had

> > > Polio and Daddy had CMT also. Did your Mom have

> > CMT

> > > too? Boy you did get a double Whammy!

> > >

> > > I am trying to convince my sisters to go to

> > their Dr.s

> > > and talk to them about the possiblity of CMT.

> > One

> > > sister is just as Klutzy or worse than I am. I

> > am

> > > getting the argument " but you said only the men

> > have

> > > it " I keep saying I was wrong, the information

> > feed

> > > to me by my Aunt (Daddy's sister) was WAAY OFF.

> > It is

> > > hard for me to say I was Wrong. " I may not

> > always be

> > > correct but I am NEVER Wrong " LOL

> > >

> > > Thanks a lot

> > >

> > > Susie

> > > Ps my Mama left my Daddy when I was 13 because

> > of the

> > > alcohol.(1959) We do have more than one thing in

> > > common it seems.

> > >

> > > --- Judy Piersol <stronggirl2@...>

> > wrote:

> > > " " Additionally it appears as though my brother,

> > who

> > > has a mild case of DS,... " "

> > >

> > >

> > >

> > __________________________________________________

> > >