Re: Vent, vent, vent...people are so insensitive

[Guest guest]

,

Please tell me that she didn't say this in front of . I agree her

words are uncalled for. You pay her for physical therapy not for

medical opinions! Especially such uninformed opinions. Now I'm mad.

She is so wrong! Where do you go for therapy? I think I recall that we

live relatively close to one another.

I'm glad that venting made you feel better.

Barbara

[Guest guest]

,

This lady is so out of line and you know what? You or do not need

anyone bringing you down. So much is said for positive attitude. How

are you supposed to keep one so you have the strength to care for your

child when you have someone like her in your life on a regular basis.

As for all the other people who are constantly reminding you of things

you probably already know and worry about all the time. Well, you know

where they can go! Since Corbin's birth, I have distanced myself from

people who bring me down. I have some wonderful, supportive friends,

but they even have know idea what it is like to not know that you child

is okay or normal for that matter. They really just don't know and I

wouldn't wish it on anyone. It is so hard sometimes to just make it

through the day.

Now I'm rambling. Anyway, we had a wonderful PT for Corbin, but she was

through the county. My older son, that will be 3 next week, saw a PT at

Children's Rockville satellite office . He name was Avjian. I'm

not sure of the spelling anymore. Or even sure that she is still there

for that matter. It has been almost 2 yrs since we have seen her. Max

had, or will always have to an extent, toticollis. He had a mild form

and responded very well to therapy. You may want to check her out. She

has 3 children of her own. Her youngest just a few months older than

Max. He middle child had behavior problems. She was so very nice and

patient and wonderful with Max. We liked her very much. Those are the

only PT's I'm familiar with. If I can find out if she is still there,

would you be interested in seeing her? Let me know. I'll stop now

before I end up writing a novel!

Barbara

[Guest guest]

,

I think we need to tell a good percentage of the people on this list that

they better fall over dead if this is the case Tell her that she needs

to get her facts straight before she starts spouting off about something

that she obviously doesn't know anything about. There are even a couple of

mitochondrial disorders that often don't even hit until the adults years -

LHON, CPEO, Kearns-Sayre - there is even an adult form of Leigh's disease!

UGH!

Terri

>

>Reply-To: Mitoonelist

>To: Mitoonelist

>Subject: Vent, vent, vent...people are so insensitive

>Date: Fri, 03 Mar 2000 19:17:44 -0200

>

>I just don't get why people want to consistently break my heart...

>

>I have this great physical therapist for (meaning she is an excellent

>PT, not necessarily a very nice

>person). Again today she says, " Oh, ... is SOOOO ataxic. It

>just makes me so sad... "

>

>Then she goes on to say, " Well, , you know that all mitochondrial

>diseases are fatal. " I told her

>that I know adults on this list with mito, and she looked shocked. " I

>don't think that's possible, " she

>says. " People with mitochondrial disease only live to be about 12 or 13

>years old. "

>

>Okay, so we don't know for sure if this is what has, but I think it's

>really mean and rotten to say;

>particularly someone who is supposed to be helping and who, by the

>way, I am paying $85 an hour!

>

>My husband says she's just being realistic, but it just makes me so damn

>mad. It really makes me want to

>give up on my son altogether.

>

>Sorry to vent. Just had to get that out into the open.

>

>Ahhh....feels so much better now. Thanks.

>

>

>

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[Guest guest]

,

Sounds like you have a mean, nasty and ignorant therapist.

My 22 year old daughter has mitochondrial disease and is a senior at Temple

University in their honors program. Tell that woman she does NOT know what

she is talking about!!

Barbara

mom to Alison/22/melas

liver transplant due to depakote toxicity

In a message dated 03/03/2000 7:24 Eastern Standard Time, sfitzger@...

writes:

<< Then she goes on to say, " Well, , you know that all mitochondrial

diseases are fatal. " I told her

that I know adults on this list with mito, and she looked shocked. " I don't

think that's possible, " she

says. " People with mitochondrial disease only live to be about 12 or 13

years old. "

>>

[Guest guest]

lauren,

vent it a little louder, babe!!! we have been told i don't know how many

times by " well meaning " people not to expect lexi to live, that she will

never do x-y-z, that all mito disorders are fatal...etc.....etc.....etc.....

i personally think that your PT was waaaaayyyyy outta line. Even if (God

forbid) there should come a day when any of us are in Gloria and Steve, or

the Hairston's shoes.....it is NOT her place to point that out to you!!!

jeeeezzzzzzz!!!!!

ruth

[Guest guest]

Ditto what the others said . I think I'd give up on the THERAPIST, but

never give up on your son! Sounds like you'll have to do a lot of educating

- I'm just so sorry you had to experience her insensitivity and even more,

her total lack of knowledge!

In a message dated 3/3/00 7:24:28 PM Eastern Standard Time,

sfitzger@... writes:

<< My husband says she's just being realistic, but it just makes me so damn

mad. It really makes me want to

give up on my son altogether.

Sorry to vent. Just had to get that out into the open.

Ahhh....feels so much better now. Thanks.

>>

[Guest guest]

In a message dated 03/03/2000 4:24:07 PM Pacific Standard Time,

sfitzger@... writes:

> " I don't think that's possible, " she

> says. " People with mitochondrial disease only live to be about 12 or 13

> years old. "

Well, she is just WRONG! She is showing her ignorance. I hope that you will

print out the following article to provide to her. It specifically mentions

adult patients. It is from Quest, a publication by the Muscular Dystrophy

Association.

<A HREF= " http://www.mdausa.org/publications/Quest/q64mito.html " >MDA / Quest

6-4 / Mitochondrial Myopathy -- An Energy Crisis in the Cells</A>

Kathy

[Guest guest]

>

>

> My husband says she's just being realistic, but it just makes me so damn mad.

It really makes me want to

> give up on my son altogether.

>

> Sorry to vent. Just had to get that out into the open.

>

> Ahhh....feels so much better now. Thanks.

>

>

;

Maybe I'm " unrealistic " ... but I think you have a right to share with your

therapist that she was way out of

line, and although she is a great therapist... unless she can change her

expectations and belief structure

for your ... perhaps, she's not the " best " physical therapist " for 's

support team. We have tons of

reality checks every day of our lives... what our kids deserve is the utmost

respect and belief of every

single person on their support team... You hang in there and make sure the folks

you're depending on see the

" whole " picture and maybe even have that wonderful ability to believe that

" anything " is possible. I have a

beautiful nine year old daughter, in full inclusion with an incredible full time

aide who definitely believes

in Jess and in miracles, who is the princess of the playground (adored by all

the Non-special need peers),

and who despite what we were told in her early years, is talking in sentences,

kicking a soccer ball, taking

the stairs all by herself, and walking on the curb all the way to the mailbox

with just mama's fingers...

Jess is developmentally delayed, has behaviors that are on the Autism spectrum,

still suffers GI distress and

grand mal seizures... but is blessing lives every single day!!! ...She is a joy

that I plan to grow old with

and learn from for many many years. You are in my thoughts, and I'm sending you

nine years of stubborn,

unrealistic optimism... and telling you it has made all the difference in the

world to our lives.

Sharon C.

J

[Guest guest]

I have to agree. Your PT may get an A in ability but an F in tact. Maybe

" Ignorance is bliss! " maybe Steve and I were lucky not knowing. But

either way, She's NOT GOD!!And noone knows how long you will be blessed

with your child. " Keep Shopping! " Is someone really able to give your

child 100% if they talk like that?

Sorry I'm getting very BOLD these days. Am I still excused?

Gloria

Still Lurking

[Guest guest]

In a message dated 03/04/2000 8:16:54 AM Eastern Standard Time,

sfitzger@... writes:

< Then, regarding his nystagmus, he goes on to say, " Gosh, wouldn't that suck

if his eyes look

like that forever? >>

BIG FAT DOPE SLAP TO HIM AND TO THE THERAPIST!!!

Michele

[Guest guest]

You are VERY excused...:-) And you are VERY correct! I thought I was just

being weak and unable to take

it. Sounds like it's okay to be a little bit more optimistic than everyone else

and not feel guilty about

it.

Thanks for the thoughts.

dsrtdwlr@... wrote:

> From: dsrtdwlr@...

>

> I have to agree. Your PT may get an A in ability but an F in tact. Maybe

> " Ignorance is bliss! " maybe Steve and I were lucky not knowing. But

> either way, She's NOT GOD!!And noone knows how long you will be blessed

> with your child. " Keep Shopping! " Is someone really able to give your

> child 100% if they talk like that?

>

> Sorry I'm getting very BOLD these days. Am I still excused?

>

> Gloria

> Still Lurking

>

> ------------------------------------------------------------------------

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by mitochondrial disease.

[Guest guest]

Hi Barbara.

Yes, she did say these things in front of . I think she thinks he's stupid

and doesn't understand what

people say because he doesn't talk much in front of her.

We go to Rockville, MD for PT. She is actually probably the best private PT

around. She is the first PT

has had who actually realized he needed orthotics for his shoes...this has

made a world of difference

for him. That is why I feel so torn. On the one hand, she is an excellent PT.

On the other hand, she is

so very negative about him that I want to cry. For instance, he can walk now

but still cannot stand

still. Each time we come in for PT, she says, " What? He's STILL not standing

up?! " Like he's failing or

something. She also keeps telling me that has behavior problems and that I

need to take him to a

psychologist. is the sweetest, happiest child I know. The problem is

that, when he is in PT, he

cries the whole time because she twists his body around and really makes him

work hard. I tell her that

he is not like that all the time; that he only cries and whines when he is in

PT. All other times he is

happy-go-lucky. She seems surprised or something.

And I have told her over and over that mito is not necessarily a death sentence.

I quoted Dr. Kelley and

said " the literature on mito needs to be rewritten because everything out there

is wrong. " She always

shakes her head and says, " No, there is no treatment for mitochondrial disease.

Children always get

progressively worse. " And of course this is not the first time I've heard that.

's first genetist

told me the exact same thing. But my point is that, with all of 's

problems, a little optimism and

support would be nice for a change. After all, is not regressing. He is

walking now where 4 months

ago he was not. He may be making progress more slowly than other kids, but at

least it's progress. I

just can't take much more of this " poor, sick little boy " garbage. I want

people to admire his spirit,

not pity his misfortunes. Even some of my husbands friends say things to

belittle his progress. One guy

actually came into my house on Christmas Eve, stood in my kitchen, and insisted

that didnt' belong in

a normal school because he's not " normal. " He says, " God, he's almost 3 and he

can't even walk like a

normal kid! " Then, regarding his nystagmus, he goes on to say, " Gosh, wouldn't

that suck if his eyes look

like that forever? " What a jerk. I had no reservations telling him to get the

**** out of my house.

My husband says people are just telling it like it is and that I should stop

being so emotional about it.

But frankly, I wasn't raised that way. I can't imagine being anyting but

supportive to my friends. I

always respect people's feelings. I guess maybe that's a rare philosophy these

days.

Anyway, sorry to ramble. But if you do know of another PT in the area that is

just as good, let me know.

I would not hesitate to change.

Best,

>

>

> ,

>

> Please tell me that she didn't say this in front of . I agree her

> words are uncalled for. You pay her for physical therapy not for

> medical opinions! Especially such uninformed opinions. Now I'm mad.

> She is so wrong! Where do you go for therapy? I think I recall that we

> live relatively close to one another.

>

> I'm glad that venting made you feel better.

>

> Barbara

>

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> ------------------------------------------------------------------------

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

[Guest guest]

In a message dated 03/03/2000 7:24:09 PM Eastern Standard Time,

sfitzger@... writes:

<< I told her

that I know adults on this list with mito, and she looked shocked. " I don't

think that's possible, " she

says. " People with mitochondrial disease only live to b >>

,

I'm so sorry this happened to you and . Most people are so uninformed

when it comes to Mito. diseases. That's why we have to educate them. It's

just so tough to listen to what they have to say. My children saw an

Endocrinologist here who has treated a couple of patients with Mito. He had

his intern do the history and exam. Then he comes in, looks at each of my

children for no more than a second a piece and preceded to tell me they

don't look sick enough so they don't have it. He then ordered labs on each

of them and two of my kids can back with grossly abnormal labs indicating

that it was very possible that they had the disease after all. He couldn't

call me himself to tell me. He had his intern call me. That made me so MAD.

We just have to fight back. I honestly wish we could get some talk show

host to do a feature on this disease.

I'm sorry you went through that. Unfortunately there are just some really

ignorant people out there who have no clue.

[Guest guest]

,

Your therapist sounds a lot like the PT my had from age 1 to almost 2.

She was extremely capable and an excellent PT with an excellent reputation

(within 5 minutes of first seeing him she suggested the orthotics) BUT her

manner was awful. She was very demanding and tough on little and I

found I would constantly pick him up or put him on my lap just to give him a

break. It came to the point where he started to cry when she showed up at

the door and I began to dread therapy sessions. Fortunately she moved out

of the state and our next PT was SO much better. She took a hands off

approach to dealing with because he could no longer tolerate the

stretching. Instead we would go to playgrounds and she would constantly

point out things I could do with him to improve his balance, coordination

and tone. He just so happened to begin walking under the direction of the

second PT.

So, I would echo everyone who suggests booting this tactless PT. I wish I

had done the same with our first PT. I will never put up with someone like

her again.

Connie

[Guest guest]

I can't believe the insensitivity of the physical therapist! My mito is not a

severe as many of the children

on this list but I am over 60. This lady needs to get her head out of the sand

and do some research before

she opens her mouth. Talk about being dumb or is it dumber?

With treatment we do now and the continuing research no one can guess how long

anyone with mito may live or

not live.

Linna Huttman

Steve Fitzgerald wrote:

>

>

> I just don't get why people want to consistently break my heart...

>

> I have this great physical therapist for (meaning she is an excellent PT,

not necessarily a very nice

> person). Again today she says, " Oh, ... is SOOOO ataxic. It just

makes me so sad... "

>

> Then she goes on to say, " Well, , you know that all mitochondrial

diseases are fatal. " I told her

> that I know adults on this list with mito, and she looked shocked. " I don't

think that's possible, " she

> says. " People with mitochondrial disease only live to be about 12 or 13 years

old. "

>

> Okay, so we don't know for sure if this is what has, but I think it's

really mean and rotten to say;

> particularly someone who is supposed to be helping and who, by the way, I

am paying $85 an hour!

>

> My husband says she's just being realistic, but it just makes me so damn mad.

It really makes me want to

> give up on my son altogether.

>

> Sorry to vent. Just had to get that out into the open.

>

> Ahhh....feels so much better now. Thanks.

>

>

>

> ------------------------------------------------------------------------

> PERFORM CPR ON YOUR APR!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2121/1/_/368657/_/952129133/

> ------------------------------------------------------------------------

>

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.