House on Fox

[Guest guest]

I watched the show with my parents, too. It was a little awkward,

particularly because I have choking/swallowing issues. My quality of life is

great,

but I do have times where I'm just plain TIRED of the strain. SMA isn't a

case, however, where we get time off for good behavior.

In a message dated 10/10/2007 4:43:42 PM Eastern Daylight Time,

boojiboy@... writes:

In a different way, I'm bummed I told my mom about the House

episode. She watched it hoping for something more enlightening about

SMA... but instead, I think it really made her upset. I'm 37 with

Type II, it sucks, but I'm doing fine.

>

> I'm completely disturbed by the way the guy was portrayed. Life

with SMA is so terrible that killing yourself (by not taking meds)

and your service dog is the only way out?

> I can't believe I let my 11 year old watch this crap. It was

exactly the defeatest bullshit that I never wanted her exposed to.

> And to think.... the writer has a 7 year old with type 2. What's

gonna happen to that kid in a few years? Is is Dad gonna tell him

that it's ok to want to die because his existance is pitiful?

> I'm gonna shut up now because I realize that my venting is not

helpful in any way.

> Sorry!!!!!

>

> Love and Hugs

> Jeni

>

>

>

>

>

> [Non-text portions of this message have been removed]

>

************************************** See what's new at http://www.aol.com

[Guest guest]

i have to disagree completely. i got several phone calls from friends

and family who know I have SMA and it seemed to make them more aware

of the disease and make them want to learn more about it.

Is it hard to imagine someone wouldn't be happy with their life? How

about if that someone had a disease any disease? I think when the

average person without any major diseases looks at this and compares

there life to someone who has way more to deal with then they do, it

makes them think. I also think for awareness you have to show the

darker side. People don't respond otherwise. Had this been the

happiest guy ever would anyone want to help find a cure for the

disease that made him so happy? Just MHO.

>

> I am so totally disgusted with how the SMA patient was portrayed on

> House last night. I can't believe that the father of a child with

> SMA was involved with creating yet another story line about a

> disabled person who commits suicide because his life is so

> unbearable. That TV show didn't raise awareness of SMA. It

> promoted the stupid idea that disabled people are better off just

> dying!

>

> To make matters worse, the character on House was this pitiful guy

> whose only apparent relationships were with a dog and looking down

> women's blouses. He had no family that they showed. All the other

> characters went around repeating how pointless and pitiful the

guy's

> life is. Even the SMA character said he hated his life right

before

> he killed his dog and allowed himself to die.

>

> I plan on writing a complaint letter to the producers of this TV

> show. Moreover, I am yet again disappointed with Families of SMA

> because they had anything at all to do with promoting this

garbage.

> This doesn't help SMA awareness. It hurts how the public views

> disabled persons.

>

>

>

[Guest guest]

I agree with you regarding the poor and completely

innacurate portrayal of a disabled person - not to

mention the weird aspect of the character's apparent

lack of family. One additional oddity for the show -

is House's " team " never went to investigate the

patient's home - something that seems pretty standard

on the show.

Most of the disabled people I know now - especially

those with SMA - are individuals full of life -

fighting happy - stubborn and full of drive -

intelligent and multi-faceted - creative and

intelligent. I'd like to see these qualities

portrayed - as they certainly would be more realistic.

I do disagree, though, that the show didn't raise any

awareness of SMA.

The Numbero Uno problem I see with SMA is that most

people - 99% or more of the general population - not

only has no idea about what SMA is/does/etc. - they've

simply never even heard the terms SMA or Spinal

Muscular Atrophy. Unlike ALS or MD - SMA means

practically nothing to most people and is practically

invisible on the minds and hearts of Joe Q. Public.

To that end, SMA being discussed even to the limited

amount (regardless of how inaccurate a portrayal of

someone with SMA the show displayed) - still does

indeed raise significant amount of awareness - on one

of the more popular shows these days. Bare minimum,

20 million people (or how every many apparently watch

the show) across the country watching TV last night

heard the term Spinal Muscular Atrophy - and I mark

that up as being a good thing.

Keeping in mind, the show House, like any " show " -

isn't real and of course attempts to over-dramatize to

try to be entertaining. How many Doctors do you know

of who stick a knife into a wall socket and are

allowed to keep practicing medicine - within hours of

being recusitated (another pretty ridiculous part of

the show).

It would be nice to see more supposed " Prime-time "

programming involve characters with disabilities -

would certainly better represent our society and

viewers of such programs, but would also help

de-mystify common, false misconceptions most

supposed-AB people have regarding people with

disabilities and how they really lead their lives.

I'm not holding my breath though, it seems programming

on TV these days is mostly reality BS and a bunch of

other mind-numbing nonsense.

Mitch

--- <way2square@...> wrote:

> I am so totally disgusted with how the SMA patient

> was portrayed on

> House last night. I can't believe that the father

> of a child with

> SMA was involved with creating yet another story

> line about a

> disabled person who commits suicide because his life

> is so

> unbearable. That TV show didn't raise awareness of

> SMA. It

> promoted the stupid idea that disabled people are

> better off just

> dying!

>

> To make matters worse, the character on House was

> this pitiful guy

> whose only apparent relationships were with a dog

> and looking down

> women's blouses. He had no family that they showed.

> All the other

> characters went around repeating how pointless and

> pitiful the guy's

> life is. Even the SMA character said he hated his

> life right before

> he killed his dog and allowed himself to die.

>

> I plan on writing a complaint letter to the

> producers of this TV

> show. Moreover, I am yet again disappointed with

> Families of SMA

> because they had anything at all to do with

> promoting this garbage.

> This doesn't help SMA awareness. It hurts how the

> public views

> disabled persons.

>

>

>

>

>

________________________________________________________________________________\

____

Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for

today's economy) at Games.

http://get.games./proddesc?gamekey=monopolyherenow

[Guest guest]

OK, once again, I guess I'm the weird one out. I know there are

plenty of times, when I've been very sick and hardly able to breath,

when I've said the exact same words the character did on the show. I

have accomplished stuff in my life, but there are times when I am so

completely *over* having SMA that it hurts. It may have been a dark

and dreary portrayal, but that has been my exact reality when I was

in similar situations.

Jenn Malatesta

nekrosys@...

nekrosys.net

[Guest guest]

Thank you Jenn (and Terry, too), that's exactly what I was feeling. I am happy

on the outside most of the time and I am very stubborn and driven and have been

told a few times I shouldn't be able to do the things I do, it's only my

stubborness and logic that keeps me going. My reality, though, is that I am not

happy most of time. I have a lot of dark days. I live alone and it's a

struggle. I have had evaluations and told there's nothing else out there to

help me. I don't have any friends or co-workers are disabled, so I feel alone a

lot of the time. I have a couple friends I see once every week or two. My

brothers both live out of town. My dad is gone and my mom has had 2 cancer

scares, so it's conceivable that I could have no family nearby in the

not-too-distant future. I have said to myself that I was tired of being trapped

in this body many times. Yes, I have wished I was dead more than once. I smile

and joke a lot but outside of work I mostly just home alone in bed

and it really gets to a person after a while. I know it was just a TV show and

one character could never represent all of us at the same time, but I identified

quite a bit with that character.

Tom

-------------- Original message --------------

From: Jenn Malatesta <nekrosys@...>

OK, once again, I guess I'm the weird one out. I know there are

plenty of times, when I've been very sick and hardly able to breath,

when I've said the exact same words the character did on the show. I

have accomplished stuff in my life, but there are times when I am so

completely *over* having SMA that it hurts. It may have been a dark

and dreary portrayal, but that has been my exact reality when I was

in similar situations.

Jenn Malatesta

nekrosys@...

nekrosys.net

[Guest guest]

I'm completely disturbed by the way the guy was portrayed. Life with SMA is so

terrible that killing yourself (by not taking meds) and your service dog is the

only way out?

I can't believe I let my 11 year old watch this crap. It was exactly the

defeatest bullshit that I never wanted her exposed to.

And to think.... the writer has a 7 year old with type 2. What's gonna happen to

that kid in a few years? Is is Dad gonna tell him that it's ok to want to die

because his existance is pitiful?

I'm gonna shut up now because I realize that my venting is not helpful in any

way.

Sorry!!!!!

Love and Hugs

Jeni

[Guest guest]

I'm with ya there. At 34 and type III. I have started to give up more

and more of what I use to do and it can bring you don big time. I

find so many things i use to be good at that I can't even do now. I

played Basket ball with my kids the other day,a sport I played all my

life and played in pick up games all the time. i never had the speed

or jumping ability of the others but was always picked for my

shooting ability from the outside. when we just played and I went to

shoot a 3, something I have always been great at. I found I didn't

have the strength to push the ball that far.

I'd say the guy they showed was having a moment tat is right in line

with many disabled people and given he was sick and in the hospital

pretty fair assessment. As i sit home today knowing I won't be

leaving this weekend for a hunting trip to Michigan bc last year I

hurt myself trying to make it were I have to hunt I realize my

friends will hunt without me for the 1st time in 14 years.

This disease SUCKS and I am always glad when some awareness is

brought and keep in mind this show is a business and not a charity.

There job is not to make an infomercial for diseases. I'm happy with

it and I already wrote them thanking them for the mention and for

what they did on Monday. I bet when they get a bunch of angry letters

they will be happy they spent Monday bringing awareness to the

disease as the cast did a charity event for those who don't no. I

also bet after getting bitched out we can kiss any chance of SMA

being on the show again goodbye.

>

> OK, once again, I guess I'm the weird one out. I know there are

> plenty of times, when I've been very sick and hardly able to

breath,

> when I've said the exact same words the character did on the show.

I

> have accomplished stuff in my life, but there are times when I am

so

> completely *over* having SMA that it hurts. It may have been a

dark

> and dreary portrayal, but that has been my exact reality when I

was

> in similar situations.

>

> Jenn Malatesta

> nekrosys@...

> nekrosys.net

>

>

>

>

>

>

[Guest guest]

Do you realize it a TV show, a drama. The writer is 1 of 30 and his

ideas aren't they only thing that make it on air. 2 people died bc of

doctors mistakes. THAT was the theme of the show. will the writer

tell his kids that become doctors it's ok to take a nap also. It's

T.V. not a reality show about a family living with SMA. I can see why

actors and shows try to stay away from this type of thing. They can't

win

>

> I'm completely disturbed by the way the guy was portrayed. Life

with SMA is so terrible that killing yourself (by not taking meds)

and your service dog is the only way out?

> I can't believe I let my 11 year old watch this crap. It was

exactly the defeatest bullshit that I never wanted her exposed to.

> And to think.... the writer has a 7 year old with type 2. What's

gonna happen to that kid in a few years? Is is Dad gonna tell him

that it's ok to want to die because his existance is pitiful?

> I'm gonna shut up now because I realize that my venting is not

helpful in any way.

> Sorry!!!!!

>

> Love and Hugs

> Jeni

>

>

>

>

>

>

[Guest guest]

In a different way, I'm bummed I told my mom about the House

episode. She watched it hoping for something more enlightening about

SMA... but instead, I think it really made her upset. I'm 37 with

Type II, it sucks, but I'm doing fine.

>

> I'm completely disturbed by the way the guy was portrayed. Life

with SMA is so terrible that killing yourself (by not taking meds)

and your service dog is the only way out?

> I can't believe I let my 11 year old watch this crap. It was

exactly the defeatest bullshit that I never wanted her exposed to.

> And to think.... the writer has a 7 year old with type 2. What's

gonna happen to that kid in a few years? Is is Dad gonna tell him

that it's ok to want to die because his existance is pitiful?

> I'm gonna shut up now because I realize that my venting is not

helpful in any way.

> Sorry!!!!!

>

> Love and Hugs

> Jeni

>

>

>

>

>

>

[Guest guest]

In a message dated 10/10/2007 3:07:23 PM Eastern Daylight Time,

nekrosys@... writes:

OK, once again, I guess I'm the weird one out. I know there are

plenty of times, when I've been very sick and hardly able to breath,

when I've said the exact same words the character did on the show. I

have accomplished stuff in my life, but there are times when I am so

completely *over* having SMA that it hurts. It may have been a dark

and dreary portrayal, but that has been my exact reality when I was

in similar situations.

I didn't see the show, but I tend to agree more with what you've said. Yes,

I've accomplished *so* much everyone said I wouldn't - living past age 2, for

instance, but it seems the longer I live the more frustrated I become because

of this disease.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

&

Phineas Maximilian 11/30/05

************************************** See what's new at http://www.aol.com

[Guest guest]

I have really appreciated everyone's comments. Both 'sides' make really

good points.

I have to say that as a regular House fan, I knew it wouldn't be

suitable for children. I taped it, knowing I could show Bernie (11

years) later if it was suitable. I don't plan on it... the opening

scene, where the car almost hits the chair, would really add to his

fears. (That thought hasn't occurred to him yet.)

Aside - he fell out of his chair for the first time Monday but wasn't

seriously hurt. Thank the Lord! Yes, it was me that forgot the seatbelt.

Anyway - Kim Lerner, who is the wife of Garrrett and mom of Zeke, has

made an interesting post on the FSMA forum. She invites members of this

group to go take a look. (She doesn't want to get involved in a

discussion here - can you blame her?)

bettylou

[Guest guest]

Yes it¹s TV drama, but what people see on TV is VERY powerful in shaping how

they think about things. this episode did all people with disabilities

damage by driving into people¹s mind once again the overall belief that

people with disabilities are miserable and useless and would rather be dead.

Imagine the good they could have done by portraying a very different view of

disabled life as positive and vital and worth living. What you see on TV

whether ³true² or not makes a difference in how the public views the world.

The power of media shouldn¹t be downplayed.

On 10/10/07 3:25 PM, " terrynow " <terrynow@...> wrote:

> Do you realize it a TV show, a drama. The writer is 1 of 30 and his

> ideas aren't they only thing that make it on air. 2 people died bc of

> doctors mistakes. THAT was the theme of the show. will the writer

> tell his kids that become doctors it's ok to take a nap also. It's

> T.V. not a reality show about a family living with SMA. I can see why

> actors and shows try to stay away from this type of thing. They can't

> win

>

>

>> >

>> > I'm completely disturbed by the way the guy was portrayed. Life

> with SMA is so terrible that killing yourself (by not taking meds)

> and your service dog is the only way out?

>> > I can't believe I let my 11 year old watch this crap. It was

> exactly the defeatest bullshit that I never wanted her exposed to.

>> > And to think.... the writer has a 7 year old with type 2. What's

> gonna happen to that kid in a few years? Is is Dad gonna tell him

> that it's ok to want to die because his existance is pitiful?

>> > I'm gonna shut up now because I realize that my venting is not

> helpful in any way.

>> > Sorry!!!!!

>> >

>> > Love and Hugs

>> > Jeni

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

Well said!

Re: Re: House on Fox

Yes it¹s TV drama, but what people see on TV is VERY powerful in shaping how

they think about things. this episode did all people with disabilities

damage by driving into people¹s mind once again the overall belief that

people with disabilities are miserable and useless and would rather be dead.

Imagine the good they could have done by portraying a very different view of

disabled life as positive and vital and worth living. What you see on TV

whether ³true² or not makes a difference in how the public views the world.

The power of media shouldn¹t be downplayed.

On 10/10/07 3:25 PM, " terrynow " <terrynow (DOT) com> wrote:

> Do you realize it a TV show, a drama. The writer is 1 of 30 and his

> ideas aren't they only thing that make it on air. 2 people died bc of

> doctors mistakes. THAT was the theme of the show. will the writer

> tell his kids that become doctors it's ok to take a nap also. It's

> T.V. not a reality show about a family living with SMA. I can see why

> actors and shows try to stay away from this type of thing. They can't

> win

>

>

>> >

>> > I'm completely disturbed by the way the guy was portrayed. Life

> with SMA is so terrible that killing yourself (by not taking meds)

> and your service dog is the only way out?

>> > I can't believe I let my 11 year old watch this crap. It was

> exactly the defeatest bullshit that I never wanted her exposed to.

>> > And to think.... the writer has a 7 year old with type 2. What's

> gonna happen to that kid in a few years? Is is Dad gonna tell him

> that it's ok to want to die because his existance is pitiful?

>> > I'm gonna shut up now because I realize that my venting is not

> helpful in any way.

>> > Sorry!!!!!

>> >

>> > Love and Hugs

>> > Jeni

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

Of course I realize that it's a tv show! I'm well aware that things are not

always going to be fluff and fold. What disturbs me is that this was PUSHED by

several SMA awareness groups (and I even sent the word out to everyone I know to

watch it!) because this was supposed to be great publicity for SMA. The

disturbing part is that what happened on that show was no better than what the

MDA used to do which everyone says that they hate. They made him look pathetic!

It was not a " doctors error " that killed him. HE chose not to take those pills

that would have killed the worms and saved his life. HE gave the pills to his

dog instead of taking them himself. The doctor should have watched him take them

and didn't, so I *guess* we can blame the doc for that. Ultimately, if I CHOOSE

to not swallow a pill that a doc prescribes I don't think we can blame the

doctor. If he had trully died because of a disease process I wouldn't be so

upset. What makes me mad is that fact that he commited suicide.

I do NOT agree with ever portraying someone with a disability as so pathetic

that the only way to be happy is to die. I don't think you understood that to be

the point of my statement. I especially can't understand being so negative about

a disease that you are familiar with. BTW, I misunderstood something. It wasn't

a writer with a child with SMA - it's an executive producer.

I just wonder if the same people who boycotted Million Dollar Baby will raise

hell about this? The only difference is that she was injured and he happened to

have SMA III. Life wasn't worth living if they were that disabled.

Love and Hugs

Jeni

Re: House on Fox

Do you realize it a TV show, a drama. The writer is 1 of 30 and his

ideas aren't they only thing that make it on air. 2 people died bc of

doctors mistakes. THAT was the theme of the show. will the writer

tell his kids that become doctors it's ok to take a nap also. It's

T.V. not a reality show about a family living with SMA. I can see why

actors and shows try to stay away from this type of thing. They can't

win

>

> I'm completely disturbed by the way the guy was portrayed. Life

with SMA is so terrible that killing yourself (by not taking meds)

and your service dog is the only way out?

> I can't believe I let my 11 year old watch this crap. It was

exactly the defeatest bullshit that I never wanted her exposed to.

> And to think.... the writer has a 7 year old with type 2. What's

gonna happen to that kid in a few years? Is is Dad gonna tell him

that it's ok to want to die because his existance is pitiful?

> I'm gonna shut up now because I realize that my venting is not

helpful in any way.

> Sorry!!!!!

>

> Love and Hugs

> Jeni

>

>

>

>

>

>

[Guest guest]

Thank you for saying MUCH more eloquently what I would have liked to

convey *LOL*

Your version was much more helpful ;0)

Love and Hugs

Jeni

Re: Re: House on Fox

Yes it¹s TV drama, but what people see on TV is VERY powerful in shaping how

they think about things. this episode did all people with disabilities

damage by driving into people¹s mind once again the overall belief that

people with disabilities are miserable and useless and would rather be dead.

Imagine the good they could have done by portraying a very different view of

disabled life as positive and vital and worth living. What you see on TV

whether ³true² or not makes a difference in how the public views the world.

The power of media shouldn¹t be downplayed.

On 10/10/07 3:25 PM, " terrynow " <terrynow (DOT) com> wrote:

> Do you realize it a TV show, a drama. The writer is 1 of 30 and his

> ideas aren't they only thing that make it on air. 2 people died bc of

> doctors mistakes. THAT was the theme of the show. will the writer

> tell his kids that become doctors it's ok to take a nap also. It's

> T.V. not a reality show about a family living with SMA. I can see why

> actors and shows try to stay away from this type of thing. They can't

> win

>

>

>> >

>> > I'm completely disturbed by the way the guy was portrayed. Life

> with SMA is so terrible that killing yourself (by not taking meds)

> and your service dog is the only way out?

>> > I can't believe I let my 11 year old watch this crap. It was

> exactly the defeatest bullshit that I never wanted her exposed to.

>> > And to think.... the writer has a 7 year old with type 2. What's

> gonna happen to that kid in a few years? Is is Dad gonna tell him

> that it's ok to want to die because his existance is pitiful?

>> > I'm gonna shut up now because I realize that my venting is not

> helpful in any way.

>> > Sorry!!!!!

>> >

>> > Love and Hugs

>> > Jeni

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

Here is a diff view... did anyone think that he DIDNT

commit suicide? We dont know that when the other

fellows came in to run more tests that they didnt move

the pill cup over and he forgot about it. The previews

for next week show a girl saying she saw this guy (his

ghost) and he is blaming the female fellow for killing

his dog! I dont think he gave his dog the pills

instead just to kill him and didnt take them just so

he could die. He thought maybe he had cancer after the

Dr's told him he did. He didn't know what was wrong

with him! He wouldn't have allowed the fellows to keep

running tests if he just wanted to die.

This is MY view of it. I am super excited to see a

show even mention SMA... AND have a service dog in it

as well!

There is my .02

--- terrynow <terrynow@...> wrote:

> Do you realize it a TV show, a drama. The writer is

> 1 of 30 and his

> ideas aren't they only thing that make it on air. 2

> people died bc of

> doctors mistakes. THAT was the theme of the show.

> will the writer

> tell his kids that become doctors it's ok to take a

> nap also. It's

> T.V. not a reality show about a family living with

> SMA. I can see why

> actors and shows try to stay away from this type of

> thing. They can't

> win

>

>

> >

> > I'm completely disturbed by the way the guy was

> portrayed. Life

> with SMA is so terrible that killing yourself (by

> not taking meds)

> and your service dog is the only way out?

> > I can't believe I let my 11 year old watch this

> crap. It was

> exactly the defeatest bullshit that I never wanted

> her exposed to.

> > And to think.... the writer has a 7 year old with

> type 2. What's

> gonna happen to that kid in a few years? Is is Dad

> gonna tell him

> that it's ok to want to die because his existance is

> pitiful?

> > I'm gonna shut up now because I realize that my

> venting is not

> helpful in any way.

> > Sorry!!!!!

> >

> > Love and Hugs

> > Jeni

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

________________________________________________________________________________\

____

Tonight's top picks. What will you watch tonight? Preview the hottest shows on

TV.

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[Guest guest]

I agree!  I don't think he killed himself, I think the doctor put it somewhere

out of his sight or out of his reach and his dog got at it, and I certainly

don't think he killed his dog on purpose!

Re: Re: House on Fox

Here is a diff view... did anyone think that he DIDNT

commit suicide? We dont know that when the other

fellows came in to run more tests that they didnt move

the pill cup over and he forgot about it. The previews

for next week show a girl saying she saw this guy (his

ghost) and he is blaming the female fellow for killing

his dog! I dont think he gave his dog the pills

instead just to kill him and didnt take them just so

he could die. He thought maybe he had cancer after the

Dr's told him he did. He didn't know what was wrong

with him! He wouldn't have allowed the fellows to keep

running tests if he just wanted to die.

This is MY view of it. I am super excited to see a

show even mention SMA... AND have a service dog in it

as well!

There is my .02

--- terrynow <terrynow@...> wrote:

> Do you realize it a TV show, a drama. The writer is

> 1 of 30 and his

> ideas aren't they only thing that make it on air. 2

> people died bc of

> doctors mistakes. THAT was the theme of the show.

> will the writer

> tell his kids that become doctors it's ok to take a

> nap also. It's

> T.V. not a reality show about a family living with

> SMA. I can see why

> actors and shows try to stay away from this type of

> thing. They can't

> win

>

>

> >

> > I'm completely disturbed by the way the guy was

> portrayed. Life

> with SMA is so terrible that killing yourself (by

> not taking meds)

> and your service dog is the only way out?

> > I can't believe I let my 11 year old watch this

> crap. It was

> exactly the defeatest bullshit that I never wanted

> her exposed to.

> > And to think.... the writer has a 7 year old with

> type 2. What's

> gonna happen to that kid in a few years? Is is Dad

> gonna tell him

> that it's ok to want to die because his existance is

> pitiful?

> > I'm gonna shut up now because I realize that my

> venting is not

> helpful in any way.

> > Sorry!!!!!

> >

> > Love and Hugs

> > Jeni

> >

> >

> >

> >

> >

> > [Non-text portions of this message have been

> removed]

> >

>

>

>

__________________________________________________________

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[Guest guest]

When I was in a car wreck and broke up pretty badly in the hospital,

I felt just like he did. I think if we video tapped you guys who

hatted this show and you were sick in the hospital, I don't think we

would see a happy go luck person either. I also think if this guy was

in a great mood the show wouldn't have been very real. i think what

is being missed here is they had a story to tell. The guy could have

had genital warts for what it matters, this was what was going to

happen, 2 people were supposed to die. now they did use SMA and they

did a benefit for SMA the day before and I am very happy they did. If

I was in that same shape in the hospital I might have looked the

exact same. I have days that I hate that I have SMA and when I'm sick

it's worse. I am allowed to feel this way too. It's my life and I

don't think anyone here is thrilled they have it.I just wish people

would realize this show was written to further a cause, it's to

entertain. Now Ihave said I have felt the same way, do you hate me

too?

> > >

> > > I'm completely disturbed by the way the guy was

> > portrayed. Life

> > with SMA is so terrible that killing yourself (by

> > not taking meds)

> > and your service dog is the only way out?

> > > I can't believe I let my 11 year old watch this

> > crap. It was

> > exactly the defeatest bullshit that I never wanted

> > her exposed to.

> > > And to think.... the writer has a 7 year old with

> > type 2. What's

> > gonna happen to that kid in a few years? Is is Dad

> > gonna tell him

> > that it's ok to want to die because his existance is

> > pitiful?

> > > I'm gonna shut up now because I realize that my

> > venting is not

> > helpful in any way.

> > > Sorry!!!!!

> > >

> > > Love and Hugs

> > > Jeni

> > >

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> >

> >

> >

>

> __________________________________________________________

> Tonight's top picks. What will you watch tonight? Preview the

hottest shows on TV.

> http://tv./

>

>

>

>

>

>

______________________________________________________________________

__

> Email and AIM finally together. You've gotta check out free AOL

Mail! - http://mail.aol.com

>

>

>

[Guest guest]

My Cousin phoned to tell me that the episode was on so I missed the first 25

minutes. I only watched about 10 minutes and found it depressing. What happened

in the first 25 minutes and what happened in the end?

I was wondering what kind of impression it would have left with my Cousin who

knows nothing about SMA???

Take care

bye for now

[Guest guest]

Wouldn't this show have been much more interesting if it portrayed the

SMA guy as having a complicated life with, say, a family (maybe a

girlfirend or kids) or showing his struggles to get employment or an

accessible apartment? The story could have given him an emotional

dimension. For example, he could have been struggling with depression

or conflicted by his feelings of wanting to die with his desire to see

his young niece grow up (or something). Even if it showed the " dark

side " of disability, it could have been a positive story which raised

awareness of SMA and disabled life.

Instead, the producers chose to take the ignorant and cheap road of

showing yet another disabled guy who is better off dead. Then, he

commits suicide! C'mon, that story is demeaning and insulting to

everyone on this board. It's the same as if they wrote a story about

some poor black woman who goes around saying, " Oh, I'm so awful

because I was born black! I may as well kill myself because I can't

get a fair shake in life. " Of course, everyone would see that as

crap. Why is it the public is okay with the media always showing

disabled people as sad, pitiful beings who are better off dead. It's

so bad at times that many disabled people begin to believe it!

The producers of this show did not even try to make anything

positive. They are either really ignorant, really lazy or they hold

some very insensitive views of disbaled people in society.

Sorry, but I am really upset about this very negative show!

[Guest guest]

I agree 100% with you - I don't believe the show

indicated the patient commited suicide - and that his

service dog snagged the pills on his own (wasn't fed

them by the patient).

Additionally, if you go to the FSMA forum - under

daily chat - you can see some clarifying comments from

the spouse of the producer - their son is 7 and has

SMA - regarding the show. Apparently it was supposed

to start with the guy - happy and content - at an ice

cream stand - eating an ice cream cone and flirting

with one of the employees (we men are so predictable

apparently). This part of the show was cut out in

editing unfortunately. Some additional comments that

if someone's really interested in reading they should

go check it out.

Mitch

--- *~~* <abrcrombsweetie@...> wrote:

> Here is a diff view... did anyone think that he

> DIDNT

> commit suicide? We dont know that when the other

> fellows came in to run more tests that they didnt

> move

> the pill cup over and he forgot about it. The

> previews

> for next week show a girl saying she saw this guy

> (his

> ghost) and he is blaming the female fellow for

> killing

> his dog! I dont think he gave his dog the pills

> instead just to kill him and didnt take them just so

> he could die. He thought maybe he had cancer after

> the

> Dr's told him he did. He didn't know what was wrong

> with him! He wouldn't have allowed the fellows to

> keep

> running tests if he just wanted to die.

>

> This is MY view of it. I am super excited to see a

> show even mention SMA... AND have a service dog in

> it

> as well!

>

> There is my .02

>

>

>

>

> --- terrynow <terrynow@...> wrote:

>

> > Do you realize it a TV show, a drama. The writer

> is

> > 1 of 30 and his

> > ideas aren't they only thing that make it on air.

> 2

> > people died bc of

> > doctors mistakes. THAT was the theme of the show.

> > will the writer

> > tell his kids that become doctors it's ok to take

> a

> > nap also. It's

> > T.V. not a reality show about a family living with

> > SMA. I can see why

> > actors and shows try to stay away from this type

> of

> > thing. They can't

> > win

> >

> >

> > >

> > > I'm completely disturbed by the way the guy was

> > portrayed. Life

> > with SMA is so terrible that killing yourself (by

> > not taking meds)

> > and your service dog is the only way out?

> > > I can't believe I let my 11 year old watch this

> > crap. It was

> > exactly the defeatest bullshit that I never wanted

> > her exposed to.

> > > And to think.... the writer has a 7 year old

> with

> > type 2. What's

> > gonna happen to that kid in a few years? Is is Dad

> > gonna tell him

> > that it's ok to want to die because his existance

> is

> > pitiful?

> > > I'm gonna shut up now because I realize that my

> > venting is not

> > helpful in any way.

> > > Sorry!!!!!

> > >

> > > Love and Hugs

> > > Jeni

> > >

> > >

> > >

> > >

> > >

> > > [Non-text portions of this message have been

> > removed]

> > >

> >

> >

> >

>

>

>

>

>

________________________________________________________________________________\

____

> Tonight's top picks. What will you watch tonight?

> Preview the hottest shows on TV.

> http://tv./

>

>

________________________________________________________________________________\

____

Don't let your dream ride pass you by. Make it a reality with Autos.

http://autos./index.html

[Guest guest]

I just read the posting on the other site you mentioned. However,

the explanation given there rings hollow. There may indeed be

different interpretations of the characters' motivations in the

show. The producers evidently made it vague, probably in an effort

to be " artistic. " However, they made no effort to avoid the shop-

worn " Million Dollar Baby " stereotype which any screen writer should

know will be interpreted by many as insulting and demeaning.

Again, I say that the producers are either ignorant, lazy or

insensitive. Even prime-time TV should be held to a higher standard

than this!

> > > >

> > > > I'm completely disturbed by the way the guy was

> > > portrayed. Life

> > > with SMA is so terrible that killing yourself (by

> > > not taking meds)

> > > and your service dog is the only way out?

> > > > I can't believe I let my 11 year old watch this

> > > crap. It was

> > > exactly the defeatest bullshit that I never wanted

> > > her exposed to.

> > > > And to think.... the writer has a 7 year old

> > with

> > > type 2. What's

> > > gonna happen to that kid in a few years? Is is Dad

> > > gonna tell him

> > > that it's ok to want to die because his existance

> > is

> > > pitiful?

> > > > I'm gonna shut up now because I realize that my

> > > venting is not

> > > helpful in any way.

> > > > Sorry!!!!!

> > > >

> > > > Love and Hugs

> > > > Jeni

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > [Non-text portions of this message have been

> > > removed]

> > > >

> > >

> > >

> > >

> >

> >

> >

> >

> >

>

_____________________________________________________________________

_______________

> > Tonight's top picks. What will you watch tonight?

> > Preview the hottest shows on TV.

> > http://tv./

> >

> >

>

>

>

>

_____________________________________________________________________

_______________

> Don't let your dream ride pass you by. Make it a reality with

Autos.

> http://autos./index.html

>

[Guest guest]

Another thing since I missed the show and only read the synopsis on the

website - did the dude with SMA also lose his sight? Call me what you will, but

I'd have quite a hard time wanting to live if, on top of all my other losses,

I went blind.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

&

Phineas Maximilian 11/30/05

************************************** See what's new at http://www.aol.com

[Guest guest]

Actually - I do NOT think any screen writer would

think the stereotype perceived by many folks of this

web group (muchless the TV viewing audience) would be

either insulting or offensive.

You give them way too much credit.

As per the movie Groundhog Day - " People are morons. "

Most people are NOT sensitive to issues regarding

people with disabilities. THinking otherwise is just

naive to the unfortunate reality of " today's world. "

To most, if not practically all people - again - they

not only don't know what SMA is, they've simply never

even heard of SMA. It's that simple. Most

supposed-AB people not only fear " disability " - but

closely associate disability with death (thanks Alana

for helping me to understand this point regarding the

reactions to SMA from some people I know). Why else

would we have a health system in our country that

seems to do its very best to hide away and

institutionalize those with disabilities and try to

segregate them from " mainstream " society? Is it about

money? Hmmmm - we don't seem to have a problem

getting the Treasury to run the printing presses for a

couple trillion bucks to fund our military in the Iraq

war - but we as a nation can't find funding for home

health care (among other things) for people with

disabilities? I don't get it.

Though I've never seen, nor will I ever see - " Million

Dollar Baby " - it won 4 Academy Awards, 45 other film

awards, and was nominated for yet another 29 awards of

some type. People around the world helped this film

gross over $100 Million in box office receipts.

Apparently lots of people who went to see this movie

weren't at all sensitive to similar issues being

bantered about regarding the House epsisode. I repeat

- people, indeed, are morons.

I'd like to think we have a society that cares and

tries to help all of its members - regardless of race,

socio-economic status, or health status - but

unfortunately, that's just not " how it is. "

I think my ultimate thought still remains - the terms

SMA and Spinal Muscular Atrophy - were mentioned on

one of the more popular shows on American television

right now - and regardless of in what context - many

more people have now at least heard these words

uttered. There's a reason SMA has been one of the

least-NIH-funded so-called orphan diseases - nobody's

ever heard of it - and that's something really tragic.

For that reason, I'm quite thankful the show House

was able to air a program involving SMA.

Mitch

--- <way2square@...> wrote:

> I just read the posting on the other site you

> mentioned. However,

> the explanation given there rings hollow. There may

> indeed be

> different interpretations of the characters'

> motivations in the

> show. The producers evidently made it vague,

> probably in an effort

> to be " artistic. " However, they made no effort to

> avoid the shop-

> worn " Million Dollar Baby " stereotype which any

> screen writer should

> know will be interpreted by many as insulting and

> demeaning.

>

> Again, I say that the producers are either ignorant,

> lazy or

> insensitive. Even prime-time TV should be held to a

> higher standard

> than this!

>

>

>

>

> > > > >

> > > > > I'm completely disturbed by the way the guy

> was

> > > > portrayed. Life

> > > > with SMA is so terrible that killing yourself

> (by

> > > > not taking meds)

> > > > and your service dog is the only way out?

> > > > > I can't believe I let my 11 year old watch

> this

> > > > crap. It was

> > > > exactly the defeatest bullshit that I never

> wanted

> > > > her exposed to.

> > > > > And to think.... the writer has a 7 year old

> > > with

> > > > type 2. What's

> > > > gonna happen to that kid in a few years? Is is

> Dad

> > > > gonna tell him

> > > > that it's ok to want to die because his

> existance

> > > is

> > > > pitiful?

> > > > > I'm gonna shut up now because I realize that

> my

> > > > venting is not

> > > > helpful in any way.

> > > > > Sorry!!!!!

> > > > >

> > > > > Love and Hugs

> > > > > Jeni

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > > [Non-text portions of this message have been

> > > > removed]

> > > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> >

>

_____________________________________________________________________

> _______________

> > > Tonight's top picks. What will you watch

> tonight?

> > > Preview the hottest shows on TV.

> > > http://tv./

> > >

> > >

> >

> >

> >

> >

>

_____________________________________________________________________

> _______________

> > Don't let your dream ride pass you by. Make it a

> reality with

> Autos.

> > http://autos./index.html

> >

>

>

>

________________________________________________________________________________\

____

Tonight's top picks. What will you watch tonight? Preview the hottest shows on

TV.

http://tv./

[Guest guest]

Tom, Your story really made me sad. I'm sorry that you are feeling like

that. Are your " dark days " because of your SMA or because you are lonely? I

think lots of people who feel alone, feel like you do, even if they are

healthy. How does the SMA affect you? I think I remember you saying that you

walk and drive.... but you were recently having more trouble getting into

your truck, just like me. I can't drive anymore just because I can't get

into my blazer. It stinks. I have gone through periods of sadness too,

especially each time I lose the ability to do some thing else that I could

just do a couple weeks ago. I think about all the things I would be doing

with my kids if I could, because when I was younger, I was so active and

loved sports. I think, though, that if you have people to spend time with,

it makes all the difference in the world. You can have SMA and still be very

happy, you just need people around to care about. You said you spend most of

your time home alone in bed..... how depressing. You have to find a way to

get out there and meet people. How about online dating? I met my wonderful

wonderful boyfriend that way. Are you able to go out places or is it too

hard? Why don't you advertise in the paper for a roommate? You'd have

constant company and some help around the house. I hope I haven't offended

you. I just think that you have to put as much effort into getting some

people into your life as you do in managing each day with SMA. Robin

Re: House on Fox

> Thank you Jenn (and Terry, too), that's exactly what I was feeling. I am

> happy on the outside most of the time and I am very stubborn and driven

> and have been told a few times I shouldn't be able to do the things I do,

> it's only my stubborness and logic that keeps me going. My reality,

> though, is that I am not happy most of time. I have a lot of dark days.

> I live alone and it's a struggle. I have had evaluations and told there's

> nothing else out there to help me. I don't have any friends or co-workers

> are disabled, so I feel alone a lot of the time. I have a couple friends

> I see once every week or two. My brothers both live out of town. My dad

> is gone and my mom has had 2 cancer scares, so it's conceivable that I

> could have no family nearby in the not-too-distant future. I have said to

> myself that I was tired of being trapped in this body many times. Yes, I

> have wished I was dead more than once. I smile and joke a lot but outside

> of work I mostly just home alone in bed

> and it really gets to a person after a while. I know it was just a TV

> show and one character could never represent all of us at the same time,

> but I identified quite a bit with that character.

> Tom

>

> -------------- Original message --------------

> From: Jenn Malatesta <nekrosys@...>

> OK, once again, I guess I'm the weird one out. I know there are

> plenty of times, when I've been very sick and hardly able to breath,

> when I've said the exact same words the character did on the show. I

> have accomplished stuff in my life, but there are times when I am so

> completely *over* having SMA that it hurts. It may have been a dark

> and dreary portrayal, but that has been my exact reality when I was

> in similar situations.

>

> Jenn Malatesta

> nekrosys@...

> nekrosys.net

>

>