Advocacy begins when least expected!

[gaykir]

It must be a slow news day in Dallas! I was called at noon by the anchor of the local ABC affiliate here to see what we thought about the comments Rush made. It seems she had called our local PD group to see if our members were upset by Rush's comments. Our executive director said" Well as a matter of fact....."

After a very brief conversation the anchor asked if she could bring a camera man and come to the house to talk to Kevin & I about PD. Naturally we said that was great. They arrived at 1:30Pm and stayed for over an hour. We talked about PD, the uproar, the political issues etc - but in short we had a chance to get some mention of PD in the local news and that's a plus. We showed them this website and they filmed some the the comments made in some of the threads here.

The show will broadcast in two hours so it will be interesting to see what comes of it. Hopefully it will be their lead story and not not just a 30 second spot. We just want to let you know that all the hoopla has created some interest this disease. You just never know when you might have a chance to be an advocate!

Gayle

[paula_w]

Ok putting check by Gayle and Kevin's names.....they're hooked now,,,,who's next? lol...just kidding .....what I really want to say is

THAT'S TERRIFIC AND THANKS FOR REPRESENTING US!

Please let us know if there is anyway we can see it....can you tape and put on you tube?

paula

[Curious]

i'm here in the dfw area....i'll be watching for sure!!

gayle...can you pm me about your local group? the only meeting i have gone to was held at a church. it was a pretty small group. i'd like to find a support group for my parents.

paula...i will see if the station has live broadcast on the web. i know our cbs station does.

[Curious]

here is the web site

http://www.wfaa.com/

[gaykir]

Unfortunatley when our kids left home, so left the ablility to tape TV stuff. I'll see if I can find someone to do it. I just figured I'd wait and ask the station for a copy.
Gayle

[Curious]

gayle...i can tape it for you.

[gaykir]

You totally Rock (as they say)!
The Dallas Area Parkinsonism Society would love a copy!
Gayle

[Steve]

put the video on YouTube, so we can all see?

[Curious]

i will do my best steve. :o i'm recording it on my computer and vhs. i pm'ed gayle my number.

as long as somebody can help me...hehe...i'll post it where ever.

[gaykir]

North Texans outraged over Limbaugh remarks

Radio host said Michael J. Fox was 'acting'


04:19 PM CDT on Wednesday, October 25, 2006

By DEBBIE DENMON / WFAA-TV


PLANO — Radio talk show host Rush Limbaugh is no stranger to controversy. But his comments about Michael J. Fox have some North Texans fuming.

Fox — who suffers from Parkinson's disease — appeared in a political ad encouraging Missouri voters to support a stem cell research measure. It showed him rocking and twitching.

Limbaugh said Fox was faking.

"This is really shamless folks, this is really shameless of Michael J. Fox," Limbaugh said. "Either he didn't take his medication or he's acting. One of the two."

Gayle Kirby is the treasurer of the Dallas-area Parkinsonism Group.

"Rush Limbaugh doesn't know his oxycontin from a hole in the wall," Kirby said. "What a bunch of crap."

Kirby spent most of Wednesday reading e-mails responding to Limbaugh's comments. She also spent time in a web chatroom to tell Limbaugh his accusations about Fox were wrong.

"Wehat I said before is, it's like saying a person with cancer is faking it because they lost their hair," Kirby said. "There's no logic to it."

For the last six years, Kirby has watched her husband, Kevin, suffer from Parkinson's. His tremors and twitches are not as severe as Fox's.

Kirby emailed everyone she knows to boycott advertisers of the Limbaugh show, and she took it a step further.

"We've been Republicans, dyed in the wool, forever, and we didn't vote Republican at all this time," Kirby said.

Limbaugh has since apologized for his remarks. But the Kirbys say the damage is done.

E-mail ddenmon@wfaa.com.

[Curious]

hubby has all the tv's at the club on channel 8. :D

was it debbie who came and did the interview?

[Thelma]

She had a chance to elaborate on the truth of Parkinsons but this blows it.

Rush Limbaugh doesn't know his oxycontin from a hole in the wall

[Curious]

i will work on editing the broadcast, so i have just the segment.

even got to see neuro talk on gayles computer! :p hehe..stevem...your rush card is going to be famous.

you did an awesome job gayle and kevin!!!! ((((hugs))))

oh...i have the vhs tape...i'll pm you gayle so i can get it to you.

[paula_w]

WHAT TEAMWORk!

gotta love it,
paula

[Curious]

She had a chance to elaborate on the truth of Parkinsons but this blows it.

by no means did that blow anything.

gayle was reading from the message board. it clearly showed that it was a comment made on the board and not gayles comment. ( showed her computer her scrolling the comments. )

my husband had over 50 people watching the segment. all the responses were positive. it got the word out.

gayle, your comment about cancer...it made a very vivid point that all who see it will understand.

[Thelma]

What were the positive comments?

Oh ya I have Cancer and I have my hair. Going to far for comparisons.

I have seen lots of people in the years I have been on the road for Stem Cell Research and if you go on the personal attack it always results in losing the points you have made.

You have to sit back and read and read over again before you make any statements that devalue your premise.

Talk about his drug use is a no no even if someone else says it.

You can never devalue anothers stupid or foolish comments by taking the same attitude.

Then where is the moral highground.

Michael J Fox is using his head and not getting into a name caling fracus, we should too.

[gaykir]

Thank you Curious! It is not easy becasue you have a TV crew here for an hour and no control over editing. Thelma, I'm sorry I was not able to meet your epectations but I think you only saw the print version and not the Video version.

Our phone is ringing off the hook and so is our e-mail. It just shows you the power of the internet and some poor souls trying to make it through with this dreadful disease.

We have a young friend who is very active with Bono & the "One" organization. She is always sending me stuff about what they are doing. It was just fun that for once, we could send something we are doing about Parkinsons'.

We never started out to be advocates. It just came our way by accident. All the phone calls we have recieved from people who saw the TV segmant have been very positive.

I apologize is they attributed statements to me that are not mine and I am sorry if I did not meet your expectations but I never planned the be involved with PD as part of my life plan. God just sent it my way for whatever reason.

Gayle

[jeanb]

Gaykir,

Can you post a direct link to the interview? I'll see what I can do.

i am in the same boat - was interviewed in Phoenix

jean

[cinick1]

I just sent Rush Limbaugh an email asking him to keep talking about MJF. You can't buy this amount of attention and public education about PD. I can't believe that we are actually discussing things like dyskinesias and levodopa on a nationally syndicated radio show (the largest in the country) for 3 days!!!

If I were being totally honest, I didn't know what dyskinesias were or that they were a predicatable consequence of longterm levodopa use before my husband was diagnosed 1 year ago. Rush makes the mistake many others do that if MJF looks "fine" on Boston Legal or on a Barbara Walters interview, then he might be "exaggerating" for political purposes. I think Rush just has the bad taste of showing his ignorance (and not really admitting it later).

But this is a good thing for the cause and if it helps us raise awareness and dollars for an illness that certainly deserves as much attention and empathy as a totally PREVENTABLE disease like AIDS, then the Rush Limbaugh incident is a good thing.

[Thelma]

a totally PREVENTABLE disease like AIDS

Tell that to the children who are born with the disease

You amaze me

[cinick1]

Thelma

Take a deep breath and at least acknowledge that a tremendous amount of public information has been provided to educate people (at least in the US) on how to prevent the spread of AIDS since 1985. Since reliable methods for testing and screening the blood supply were developed (at least in the US), the cases of transmission through blood donation or organ transplants or kidney dialysis have also been dramatically reduced in the past 10 or so years.

All I'm saying is that the rise in the number of new cases in the US cannot be due to lack of knowledge. The fact is this virus is largely preventable IF folks don't put themselves (and therefore unborn children) at risk.

People with Parkinson's were not given the choice to weigh their risks as they didn't even know they were at risk for this disease. That is the point!!! We don't have enough %$+))) information on what causes this disease or how to prevent it. Yet we know scads about what causes AIDs and people still put themselves at risk.

Get your high horse off my throat, please!!!

[gaykir]

Jean - Curious and I are working to get it posted and when we do we will share the link. I must admit, though comments such as the ones from Thelma really discourage someone who has timidly stepped into a public advocacy role. My life is as a caregiver for my husband first and foremost. I voluteer with our local PD group because it has benefitted Kevin so much.

I am under enough pressure just getting through each day without barbs directed toward me because I spoke out to protect and defend my husband and our many Parkinson friends.

Gayle

[Curious]

Gaykir,

Can you post a direct link to the interview? I'll see what I can do.

i am in the same boat - was interviewed in Phoenix

jean

i'll contact you for your help jean. :o if all else fails...i'll send the vhs to gayle.

i need to edit the file...it won't even email. *sigh*

[Thelma]

I will try to make myself as clear as I can be which at times is a bit foggy I guess.

To make any remarks about another disease when fighting for one in particular is like saying mine is bigger than yours. It won't work to your advantage and will irritate hundreds who have other diseases that are in their way as serious and as debilitating as the one you are advocating for.

You need all of US that have CANCER to be on your side as well as those of US who have had Amyotrophic Lateral Sclerosis in the family for two generations and have faced years of Aquirred Immune Deficiency Disease before it's enevitable ending of my grandsons life.

We all need to band together and not make comparisons of what initiated the diseases or what the prognosis is for it nor even what was the initial happening that brought it about.

They exist and that is cause enough to annialate them. sp

Although the knowledge of the underlying cause can and in all probability will help in the cure it is not what one person did or didn't do that we have to speak of.

We need to speak of the diseases......................... Parkinson's .....Alzheimers....Als.......Cancer.........

Rush spoke and the world listened and but will they act. The next election will tell if they have been listening but will it bring forth Stem Cell research is another matter.

I am going to say this and may get booted out of here for it but what the hay.

When you write to anyone and try to tell them about Parkinson's if you resort to your own personal situation and try telling the personal saga of the disease you are going to find they will soon tire of it.

Mike can do it because he is a star of movies and tv. People feel they know him and they will care for his story. They won't for yours or mine. Sounds harsh I know but that is the way it is and if you chose to fight for the cure then you have to accept the fact that it will not be easy and you don't have any new message to get across.

It has been said over and over again by so many and the world has stopped listening save to the news personalities and such.

We as the people have only the value of the masses on our sife. In the petition even when we gloated that over 20,000 had signed it wasn't enough and we were constantly saying the same thing over and over and over again esplaining and defending our action.

When I look back remarkably now it was to the same people again and again.

The ones out there who oppose the reserch are as an endless line that we will never ever get to think as we do. Not as I do but as we do.

Our cause in the cure is endless as well but if we are ever going to succeed it has to be as MJF is doing. Bringing people the face of Parkinsons but not with the look at me how I suffer and what I have to do to exist but with the face of this is me and this is the result of Parkinson's. A disease that can be helped with YOUR help.

You out there with Cancer and you out there with Als and YOU out there who at this time have nothing wrong with you,

WE want to help YOU and all that exist today or will come later if WE don't succeed.

Support Stem Cell Research and give it a run for the health of US all.


ps
Nothing I say is personal to anyone it is my opinion and as such sometimes worthy and sometimes useless. Just as long as it is heard is okay with me.

[gaykir]

Thelma:
Thank you for not yelling!
:)
Gayle

[ol'cs]

You made this statement quite clear to us all awhile back. We can't just blog for PD, we MUST change the research world to grow in leaps and bounds to change society until the day comes when "bad genes" and all disease causing factors can be eliminated or rendered under control for all time forward. I don't think that your viewpoint is fully apppreciated by all. Swords into medical research; finding cures to the ills of humankind, rather than finding new ways of mass murder (and the inaction to "cure diseases such as cancer, alz, PD 'etc, etc.' is indeed equivalent to mass murder).
Together we stand, and conquer disease; divided we simply fall to the ground one by one. AIDS has created yet another nightmare for humankind to deal with, along with the scores of other diseases that cut the throats of good people every minute. This is a PD board, but your wider view about the wide world of suffering should remind us that we are not the only horrendous disease in the world. Yes we deserve all we can get because we live on and instead of just dying, we linger on to negatively affect all around them. Other diseases aren't so relatively benign.

[MikeTTF]

You're right about not mentioning Limbaugh "problem". It's much more powerful to let it be said in peoples own minds, than hear it from an angry PWP. Folks can smell hypocracy a mile away ... and Rush reeks.

MikeTTF


What were the positive comments?

Oh ya I have Cancer and I have my hair. Going to far for comparisons.

I have seen lots of people in the years I have been on the road for Stem Cell Research and if you go on the personal attack it always results in losing the points you have made.

You have to sit back and read and read over again before you make any statements that devalue your premise.

Talk about his drug use is a no no even if someone else says it.

You can never devalue anothers stupid or foolish comments by taking the same attitude.

Then where is the moral highground.

Michael J Fox is using his head and not getting into a name caling fracus, we should too.

[Curious]

howdy! :D

was that nice enough to butter y'all up? :o i got the cd in the mail to gayle...she should have it by noon saturday. sorry for the delay. new computer with all the bells and whistles...i just have to find the time to learn how!