[paula_w]

FROM: Daily Herald (Chicago)
Actor says stem cell issue personal, not political
BY MARNI PYKE
Daily Herald Staff Writer
Posted Tuesday, October 24, 2006

Michael J. Fox played a conservative Republican on the television
series "Family Ties," but Tuesday he was clearly in the other camp.

Appearing at a rally for 6th Congressional District Democratic
candidate Tammy Duckworth Tuesday in Wheaton, the actor, who suffers
from Parkinson's disease, called for change in Congress to allow for
federal funding of embryonic stem cell research. Duckworth is running
against Republican Peter Roskam.

Asked if his character in "Family Ties" Alex P. Keaton would approve,
Fox said yes.

"It's a nonpartisan problem that needs a bipartisan solution," he
said. "People on both sides of the aisle are in favor of it."

In fact, Fox said he's supported lawmakers such as Republican Sen.
Arlen Specter of Pennsylvania, who favors the policy.

For Fox, the issue is personal because of his diagnosis with
Parkinson's in 1991. He made his condition public in 1998 and
established a foundation to raise money toward a cure.

"It's the first thing I deal with when I wake up in the morning and
the last thing I deal with when go to sleep at night," he said.

Parkinson's is a brain disorder that damages the cells that
coordinate the body's movements.

Wearing a dark suit and tie, Fox displayed the same humorous spark he
had in the blockbuster movie "Back to the Future." But the toll the
disease has taken shows in his thin face and the fidgeting and
involuntary movements that are offshoots of Parkinson's.

"There's a million little losses," he said. "I can't move the way I
used to move. There's a lack of spontaneity."

Still, he considers himself lucky.

"If you wait and pay attention, something will come in and fill that
hole. On a personal level, it made me a better parent and a better
husband. I wrote a book," he said. "It's allowed me to do this."

He passionately believes that embryonic stem cell research holds the
clue to his condition and others such as Alzheimer's disease and
diabetes.

"Seventy percent of the country is in favor of it, but it's one of
those issues that seems to be easily put aside at the last minute,"
he said. "We expected it to happen, but when President Bush vetoed
it, it just hurt. It hurt all of us."

As part of his crusade, Fox has made a commercial for Claire
McCaskill, a Democratic Senate candidate in Missouri. The commercial,
which shows Fox shaking as he speaks, was greeted with skepticism by
conservative commentator Rush Limbaugh, who suggested he was either
off his medication or acting.

Fox didn't rise to the bait.

"So many people speculate about your symptoms," he said. "It's a very
confusing disease for people who aren't familiar with it. On a macro
sense, nobody has the same disease. We all have our own version of
it."

The body motion he displayed in the ad is a result of dyskinesia,
involuntary movements that can be caused by Parkinson's medications,
Fox said.

"The reason we're all hoping for a cure is the efficacy of the drug
wears off after a time," he said. "Fifteen years ago, I could hide it.

"The drug is a masking agent. Then, it starts to wear off and doesn't
work as well or you get side effects from it, and then you have to
make decisions."

As he sat waiting to make his appearance, Fox acknowledged he'd
rather be home.

"My wife would rather I be home - there were four kids she had to get
ready for school today."

But the stakes are too high, he said he believes.

"The answers are there, but they're not going to fall out of a clear
blue sky. We have to take responsibility for seeking them out.

"For some people it may mean a tough choice; for some people it may
be an easy choice. But it's a choice that has to be made and we have
to be proactive," he said.

"And if it's important to us, it should not be a chip in the game but
something we claim as a right as Americans. To have our best
researchers and our best scientific minds have the support of the
government to act in our best interests for our welfare."

mpyke@dailyherald.com

[LindaH]

Thanks Paula, great article.
I think the point also should be made that neither Michael J Fox, nor other embryonic stem cell research supporters, nor the Democrats first politicized the issue. This was done by the Bush administration, pandering to the religious right. Federal funding decisions on ESCR, or any type of research should be based on the scientific evidence and promise, which this administration continually ignores in hopes of appeasing their base of right-wing voters.

So, as we saw in July, in spite of the support for expanding federal funding from major U.S. and international medical and health organizations, Nobel laureate scientists, the majority of the Congress and the majority of the U.S. public, one man ignored all of these voices, based on his own narrow political and religious beliefs, and vetoed HR 810, dashing the hope of millions.

How dare Limbaugh and others like him accuse Michael J. Fox of politicizing what should have been a medical and scientific issue! It's already been politicized. The alternative to fighting back is for all of us to roll over and play dead!

BTW you can contact the owner of Limbaugh's radio network -Kraig Kitchen, President,Premiere Radio Networks (division of Clear Channel) at (800)533-8686

[paula_w]

Michael Fox is simply targeting states that could bring about an increase in ESCR research. He has a personal vested interest...his life....and has the perfect right to do so. I agree Linda. it's Rush who is politicizing. And not doing a very good job of it.

Paula

[ol'cs]

Mush is going to politicalitza this issue. I mean, what's he gonna do, devote a couple of hours of air time to get the public educated on what PD is and how it has so many different "faces" and "phazes", and how utterly debilitating PD is?

[Thelma]

No

That is the job of all the people here and out there in the WWW

[boann]

Originally Posted by paula_w

FROM: Daily Herald (Chicago)

The body motion he displayed in the ad is a result of dyskinesia,
involuntary movements that can be caused by Parkinson's medications,
Fox said.

"The reason we're all hoping for a cure is the efficacy of the drug
wears off after a time," he said. "Fifteen years ago, I could hide it.

"The drug is a masking agent. Then, it starts to wear off and doesn't
work as well or you get side effects from it, and then you have to
make decisions."

mpyke@dailyherald.com

call me crazy, but to me, these are crucial words - the issue is not just that we have this horrible incurable disease, and not just that the drugs are inadequate, but that their side effects can actually compete with the disease for the title "most debilitating" - this drug actually does damage, and it is billed as an inevitability for all pwp.

maybe this is a flawed analogy because HIV is 1) an infectious disease and 2) a virus, i.e., there is one target and they know what it is, and maybe there are other differences that will make me red in the face when pointed out, but as far as i know, in less than 20 years, we are on the second generation of anti virals - and - please correct me if i am wrong, but i have the impression that a big part of the reason the first generation was considered not good enough was side effects.

they made a stink, they have something better now - still not perfect by a long shot, but i just don't see how clarity regarding the toxicity of current pd therapies could do anything but forward the cause of stem cell research - not to mention raising awareness of what PD is really about.

am i nuts? am i missing something?

[paula_w]

No you aren't missing anything. The truth is that our meds eventually turn against us. Then we have the option of DBS, which helps some, doesn't help others. I don't know that there will ever be one treatment that helps everyone.

You are exactly right when you say these are the crucial words. I have emphasized this in all of my emails and Mike did explain, but the media has not shown any interest in this emphasis at this point. It has gone political.

But that doesn't mean we should stop writing to everyone you can think of about the truth behind his "squirming". And anyone who has dyskinesia, knows that sitting in a chair is the worst position and the most uncomfortable one to be in to try to contol dyskinesia. You are very limited in where you can go with all that involuntary movement. So MIchael is going to look worse trying to stay contained than if he were standing up and able to move around.

He is on Katie Couric..CBS news tonight. What will the day bring and how can we use it to educate the public?

paula

[boann]

what if PAN, PDF, NPF, APDA and MJFF (or any one or combination thereof) all either individually or together issued a press release clarifying the difference between the "ravages" of the disease and the "ravages" of the meds?

[jes123]

and on tues evening- oct 31st, i am to do a live in-depth interview for our local NBC affiliate.


To.: Mr Rush Limbaigjh::

It becomes glaringly apparent that you have no concept of what a diagnosisi of Parrkinson's Disease means. to a young person nor do you have a clue about how the medicines work. I have been diagnosed for over 16 years and have lived with this damn disease on my terms most of that time. I have became a PD activist; in part to help educate people like you about the symptoms, medications, probable causes, surgical options, and affect a Parkinson’s patient. Being an advocate means that no matter how much I hurt when I wake up in the morning, I an going to gulp down the ten )10 pills that are my breakfast and as soon as they kick in, I will slide out of my lift chair and crawl to the bathroom. There I will look in the mirror, surprised each morning that I am still myself not the haggered old gnome woman that I feel like,. Then I thank the Lord for giving me another day in which to carry out His jobs for me. I see my husband off to work and I see the kids off to school. Then I go in and turn on my computer and oh yes, if I even think about slaking off, the Lord doesn't mind giving me a swift kick in the ***.

The meds work some days and not others. This is why Parkinson’s Disease is so
hard to pin down with a easy, glib excuse. PD is called the ‘snowflake disease’ because no two cases are exactly the same. The symptoms are many & varied and they strike a person with no perceivable rhyme or reason. Now the meds are the same way. Two people who are very similar in age, length of diagnosis, weight and all other factor s similar, could take the same regiment of medications with exactly the opposite effects. As it is, our medications fluctuate day by day. We can never be sure when our meds will work and give us an “on’ period ( this could be a time that is practically symptom free and our Parkinson’s would not be obvious); but the medicine can just as easily go “off”
and you find yourself frozen or tremoring uncontrollably or diskenetic as Michael J. Fox was in the commercial to which you refer. Dyskinesia. is a side effects of his medication- a classic case of the cure being as bad as the disorder. Dyskinesia is the involuntary movement that can occur from levadopaa--which we take to replace the dopamine that our brains do manufacture anymore.. Dyskinesia can be caused by taking too much of the carbo/levodopa or it may be caused from taking it for so many years (I have been on this drug for over16 years) that it is no the powerful drugs that we must take each day. I’m afraid that you don’t longer as effective nor as long-lasting as it once had been or it may just be the body’s reaction to know enough about Parkinson’s Disease to make a call that Michael was acting..

I spend most of my time in a wheelchair and I could be a poster child for spousal abuse, I have so many bruises from falls and crashes. but almost every day-even if it is just a trip up to the grocery store , I make it a point to get dressed, put on makeup and go somewhere with my caregiver just to show people that PD is not a fun nor pretty disease. Sometimes I fall flat on my face in a store-sometimes I wet myself, often times I drool and shake. Little kids stare at me but I take the time to explain to them that it isn't a disease that you can catch like a cold. I tell them that it can happen to anyone so they must always listen to their own bodies and take care of that body. The grown-ups think they have me all figured out-drunk & disorderly at this hour of the morning! But I patiently tell them(as they wait behind me in a check out lane jumping up and down like one of those always-in-a-hurry folks that I used to be), while i fumble for my money that it is the same disease that Michael J. Fox, Muhammed Ali, the late Pope and thousands of others are diagnosed with each day. I tell them that if it could happen to me, then it can happen to them.

It seems as if you think that people with Parkinson's should take their affliction inside the house and become philodendrons just so as not to force you to see what PD really does to a person. You have a cohort in Ms. Andrea Lane Zinga. She said pretty much that handicapped people have no business getting in the way of motivated people such as herself. She was then running for the US Congresswoman from the 17th district from Illlinois against Lane Evans, to whom she lost after making stupid remarks like yours. This year she is back at it running against Phil Hare, a longtime aide to Lane and he shares the same values as Lane. I would like for you to come to visit me in Peoria, Illinois, where i live and go shopping with me for a day. It is always such an adventure

. I can assure you that Michael J. Fox would never stoop so low as to "act" like he has Parkinson’s. He doesn't have to fake those dreadful times when you feel yourself spinning out of control and all your meds quite working, It is a very scary place to be in. I applaud Michael J. Fox for having the courage to go on TV and to show people the true face of a person with Parkinson’s. I know that it took a lot strength and courage to do what he did for a cause that he believes in.
.
If you cannot take time to come to Peoria so that I can make my point, then perhaps you'll visit my website at:
www.calipso-pd.org
and take a look at my video called; "Parkinson's Disease-It's a Life Sentence not a Death Sentence." You might just learn enough to realize that you owe Mr. Fox a huge apology for your inconsiderate and demeaning words. It might just cause a tiny bit of compassion to grow from that stone that is in your chest where your heart ought to be.

Sincerely,

Joan Blessington Snyder
Founder & President of CALIPSO
(Central Illinois Advocates of Lives Interrupted
by Parkinson’s Support Organization)

[paula_w]

PAN cannot comment as an org. because of their non-profit status prohibiting them from participating in political campaigns. They have passed this on and recommended reading their site. They have also helped to set up an interview in the DC area for local PAN state coordinators and have encouraged state coordinators to call their local news affiliates.

Educating Rush Limbaugh:
Co-Founder of Congressional Working Group
on Parkinson’s Disease Sends Right-Wing Talker
an NIH Primer on Parkinson’s
Limbaugh made wild accusations about Michael J. Fox yesterday

WASHINGTON, DC – Yesterday, on his nationally-syndicated radio show, right-wing host Rush Limbaugh accused Michael J. Fox, who suffers from Parkinson’s Disease, of acting and exaggerating his symptoms in recent television ads for pro-stem cell research candidates.

Rep. Carolyn Maloney (NY-14), who is a co-founder of the Congressional Working Group on Parkinson’s Disease, today sent Rush Limbaugh a manual written by the National Institutes of Health’s National Institute of Neurological Disorders and Stroke entitled Parkinson’s Disease: Challenges, Progress, and Promise, so that the right-wing radio host can learn more about the devastating disease (http://maloney.house.gov/documents/health/parkinsons/102506LimbaughLtr.pdf ). Maloney also issued the following statement condemning Limbaugh’s accusations:

“It says a lot that Mr. Limbaugh would rather attack a man suffering from a debilitating disease than help attack the disease itself. Ridiculing Mr. Fox’s symptoms does not bring us any closer to curing Parkinson’s Disease, but supporting stem cell research would.

“It is highly ironic that Mr. Limbaugh, a renowned mouthpiece for the Republican Party, also attacked Michael J. Fox for exercising his right to support candidates in favor of stem cell research. Mr. Limbaugh probably realizes he’s on the wrong side of this issue and is desperate to divert attention.

“I hope that Mr. Limbaugh will take this as an opportunity to learn more about Parkinson’s Disease, its effects and the research being done to eradicate it. The report I have sent him contains some tremendously useful information.

“I applaud Michael J. Fox for his tireless work to eradicate Parkinson’s Disease and to promote stem cell research, even as he suffers the obvious effects of his condition. It is through his work and the work of people like him that we will eventually beat this disease.”

##

Afshin Mohamadi
Communications Director
Rep. Carolyn Maloney (NY-14)