Excellent Personal Story and PD recap
 

Phyllis used to be the restaurant critic for the Washington Post for more than 30(?) years I think.

FROM: Washington Post
40 Years Later, Still No Cure

By Phyllis Richman
Sunday, March 4, 2007; Page B03

Mamie Lieberman was a dynamo. Born just before the 20th century, she raised five children in Camden, N.J., scraping by while her husband bought and sold wholesalers' leftovers and disappeared for long stretches. It was Mamie who put the family on a stable financial footing, though not until her children were grown. She was past 50 when she started selling odd lots of shoes to her neighbors. Within a few years, she had opened a series of seven stores, in New Jersey and the Washington area -- employing both of her sons and two sons-in-law.'

I was Mamie's oldest granddaughter, so my perch was at her side. With her purse inevitably tucked under her arm like a baguette, Mamie could sweet-talk a customer into buying another pair, survey every corner of her store while never letting the cash register out of her sight and set aside the best shoes for her 15 grandchildren in just the right sizes -- or close enough that a wad of tissue or thinner socks would make them wearable.

But she wasn't a shoe mogul for long. By the time she was 70, she almost never left the house. She couldn't dress herself. She spent her days sitting on the sofa, her face expressionless and nothing moving but her hands, which trembled constantly. She had Parkinson's.

I have it, too. When the disease was diagnosed seven years ago, images of my immobilized grandmother filled my mind. But she had the illness 40 years ago, before polio was wiped out, when tuberculosis was still a common worry, and malaria was just yielding to DDT (which was still considered a great help to society). Medicine was far different in Grandma's day. I have an arsenal of medications to control my symptoms.

But one thing hasn't changed. Unlike polio, TB and malaria, Parkinson's still can't be prevented or cured. Forty years ago, patients were told that a cure was probably a decade away. I heard the same hopeful estimate seven years ago, and I hear it today. But unless something happens soon to speed up the search for new treatments -- more aggressive federal funding of stem-cell and other scientific research, for instance, and a more streamlined approval process for new drugs -- then my ultimate fate will be no different than it would have been in 1960.

My disease did not start like Mamie's. My astute internist first sent me to a neurologist because of my handwriting. It had always been small and tight, but what concerned him was that it was getting worse.
Micrographia, it turns out, is a common symptom of Parkinson's. I had almost no tremor -- the symptom that most people associate with the disease -- but as I read about the disease, I realized I had a lot of symptoms that I'd never considered more than unrelated quirks. I had trouble getting up from a chair, getting out of bed and even turning in bed. My voice had grown softer, and I was increasingly clumsy: I tended to trip and fall so often that my knees were perpetually scraped. Putting change in my wallet was awkward and slow; at supermarkets and pharmacies, I could feel the impatience of shoppers behind me.

Fortunately for my job as a restaurant critic, the disease hadn't robbed me of my sense of smell, as it does many people. But I was beginning to look less than respectable when I tried to eat spaghetti or use chopsticks. After taking notes during interviews, I had to rush home and immediately try to transcribe them, sometimes needing a magnifying glass. And then there were the days when I nearly fell asleep at lunch with my face in my mousse. Driving terrified me.

I devoured the Web sites of a dozen Parkinson's organizations and signed on to chat lines and e-mail group lists. First I sought an understanding of the disease and its treatments. Parkinson's primarily affects a part of the brain called the substantia nigra, and by the time it is diagnosed, the disease has killed about 80 percent of those cells. They supply the brain with dopamine, the chemical messenger responsible for directing and coordinating movement, including autonomic functions such as sweating and swallowing. In early Parkinson's, a person doesn't typically swing her arms when walking, at least on the affected side (eventually both sides become affected). Walking itself becomes erratic.

In advanced stages, Parkinson's causes freezing -- as if you're glued to the ground -- and slow and halting steps, or sometimes uncontrolled running as if you're going downhill with no brakes. Because I am at an early stage, I can walk well for half a block (on a good day), and farther with a cane, which also keeps me from falling. My situation is complicated by an intermittent back problem (Parkinson's doesn't prevent you from experiencing the other health challenges associated with growing older).

As my body has taught me, the really knotty part of this disease is its unpredictability. The day-to-day symptoms are as variable as Washington's weather, and the progress of the disease has no predictable pace. I've met people who've had it for 34 years and are still living independently. Others, who have had it for just a few years, need medication every couple of hours, and some already feel their minds becoming as undependable as their tremulous hands.

I take pills -- one to seven of them four times a day -- to the tune of $12,500 worth a year, not counting vitamins, blood-pressure medication and such. As I inevitably worsen, I'll be taking more pills and more kinds, more often, until I'm on what looks like a newborn's feeding schedule.
At some point, the medication will create its own problems. The dopamine pills that unlock my rigid body every day often cause dyskinesias (jerky, writhing and uncontrollable movements), and their effectiveness will wane as I desperately await the next dose. Parkinson's medications commonly cause sleeplessness or sleepiness, weight gain or loss, hallucinations and compulsive behaviors including, for some men (I know this one is hard to believe), uncontrollable gambling. Twenty to 40 percent of us can expect to become demented. As though this weren't depressing enough, among the typical early symptoms that lead to diagnosis is depression, a chemical effect of the disease that can manifest itself at any stage. More and more I realize that medical advances are making my early stages easier than Grandma's were, but without some quick breakthroughs my fate is going to wind up identical to hers.

More than 1 million Americans share this dismal future with me, and 40,000 to 60,000 more join us each year. Not all are senior citizens; though the average age of onset is 57, 15 percent of people with Parkinson's (PWPs, we call ourselves) receive the diagnosis before age 50, some as young as 18.

A million doesn't put Parkinson's at the top of the disease hit parade. Nevertheless, this is an expensive disease, partly because people live with it for so long. On an individual scale, nursing care costs can be astronomical, and the newest brain surgery, in which a kind of Parkinson's pacemaker is implanted, can cost $100,000. On a national scale, the disease has been estimated to cost $5.6 billion a year, including treatment, disability pay and lost income. That figure is expected to climb steeply as baby boomers reach prime Parkinson's age.


Why have there been so few Parkinson's advancements since my grandmother's day? That moves us from the world of medicine to the world of politics, with a detour into the realm of consumerism.

With a mere million sufferers, Parkinson's is not worth the risk for pharmaceutical companies to sink big money into unexplored territory. There's a surer profit in developing another variation of a successful drug than in creating a new kind of drug, for which the clinical trials are not only apt to be more expensive, but the chance of failure runs higher and the approval process is likely to take longer. Thus, among the newest Parkinson's drugs, I can choose Mirapex or Requip, which serve the same purpose. Presented as a major accomplishment are levodopa pills that dissolve under the tongue, in case the patient has no water on hand. Quick-acting injectable drugs, and delivery by patch rather than by pill-- those are today's breakthroughs. They are neat tricks, definitely useful, but I'd much rather be offered a wider range of treatments than a choice of brand names.

Of course, as a patient, I don't have much say in the matter. Or do I? If there is one person who will deserve credit when this disease is eventually cured, it will most likely be my fellow PWP Michael J. Fox. In seven years -- since just about when my Parkinson's was diagnosed -- he has raised so much money that, with matching grants and joint projects, he has directed $90 million worth of Parkinson's research. His public presence has brought Parkinson's great attention and a sympathetic response.

Fox also has been a charismatic representative of "patient power," a growing factor in this disease and the reason I am going public now. Parkinson's patients have developed Web sites, such as http://www.pdpipeline.org, that track clinical trials and drugs in the pipeline. Patients have been significant players in conferences, have spoken out about and to drug companies, and have rounded up subjects for clinical trials. They have been increasingly effective as lobbyists; during the annual legislative forum of the Parkinson's Action Network in early February, PWPs fanned out for 250 meetings with their states' Senate and congressional staffs in one day. At the evening reception it was announced that the Parkinson's caucus, which last year numbered about 80 members, had that day alone received more than 80 calls from legislators seeking to join, doubling its size.

The next frontier for Parkinson's is political. Private enterprise can't afford the expensive next steps, so promising drugs wait years to be tested. Nor can the public coordinate progress the way a government body can. Research is shooting off in myriad directions and someone should make sure that the branches are in communication. What is too costly for private enterprise can turn out to be action the government can't afford not to take.

Politics is particularly obvious in the issue of stem cells. By now, embryonic stem cells -- the thousands of leftovers from in vitro fertilization -- have become merely a symbol. It's not that they are so sacred that they are being cared for and protected; rather, they are defrosted and disposed of. Medical waste has more respect than sick people, for whom stem cell research could prove promising for many debilitating diseases if it had sufficient government funding. This is not a matter of preserving the life of cells, but of preferring to consign them to the dump rather than the test tube.

To limit federally funded research to adult stem cells is not a viable solution. The search for a cure requires both. Story Landis, director of the National Institute of Neurological Disorders and Stroke, was unequivocal when questioned in a Senate hearing recently about how the federal policy on stem-cell research is affecting medical research. "We are missing out on possible breakthroughs," she said. The ability to work on newly derived stem-cell colonies, currently precluded from federal funding, "would be incredibly important."

On Jan. 11, which would have been the 95th birthday of Mamie's eldest daughter (my mother), the House voted 273 to 174 to expand embryonic stem-cell research. It wasn't enough to override a presidential veto, but it was 18 votes more than identical legislation won last year. The Senate vote on stem-cell research is expected in the next few weeks. Feb. 28 was Mamie Lieberman's birthday. She was a gentle, patient woman, but fiercely protective of her children and grandchildren. I know just the right present for her.
richmanp@bellatlantic.net

Phyllis Richman, a freelance writer, is former restaurant critic for The Washington Post and the author of three culinary mysteries, including "The Butter Did It" (HarperCollins).

http://www.washingtonpost.com/wp-dyn/content/article/2007/03/02/AR2007030202034.html

Sorry Paula, but Pro-Life has the right to be heard too
 

Firstly, your article mentions that the author is a restaurant critic and her smell has not been affected. No effect on the olfactory system is common to those with genetic mutations. Since there is also a history in the family of Parkinson's disease, the author more than likely may have a genetic form of Parkinson's Disease. The Author might consider going to Athena Diagnostics and having a Parkin gene test completed. The author could be a helpful candidate in the area of genetic research. By having the test, if the author proves to have a mutation, he/she could be helpful by providing researchers more gene information to discover a cure for not only patients with a genetic cause, but also those with idiopathic Parkinson's. Parkinson's disease is not caused by genetics, but if researchers can discover a commonality between exposure of a toxin or commonality of stress, for those with genetic mutations, it will also present a strong piece of evidence of what causes idiopathic Parkinson's disease.

To date, evidence suggests the best treatment approach to helping those with genetic mutations is DBS surgery, which will help by decreasing the patient's need for meds.

The three diseases the author lists in her article, Tuberculocus, Polio and malaria are all caused by parasites. Either the author is stating that the the cure for Parkinson's is as simple as discovering a parasite, or she is comparing apples and oranges. The brain's blood barrier would be pretty tough to penetrate for a parasite. Today's scientific society is advanced enough to have picked up a parasite if the answer was that simple. It is precisely the complexity of the brain and the blood brain barrier that a cure has not yet been developed. Yes, I was told 15 years ago that a cure would be found in 5 years. I was told the cure would be found through stem cell research. How many years and how many billions of dollars do scientists need to continue to insist researching stem cells is the answer to curing Parkinson's disease?

Just curious, is there a relationship between the author's grandmother and Dr. Lieberman or is the same last name just coincidence?

The tissue used from couples who have chosen to use invitro fertilization is the responsibility of the parents. More and more couples are choosing to try this route because they want a family or the wife is a professional who wants to put off childbirth until her late 30's or 40's, after her career is established. If a couple is unable to bear their own children, the embryos are provided to give them an opportunity to fulfill their need to be parents.

The children born iare a gift from God to teach us how to nourish, love, and give fully of ourselves until we have taught the child to be self sufficient . In turn, the children, if properly nourished by their parents, will also have children and the skills learned to help their parents when they are elderly and need help. Children were never meant to be a right for every married couple and certainly not frozen as embryo's so the parent's may choose to have them implanted when it is convenient for the parent's to raise them, or to implant in a surrogate mother. Because the technology is available, does it mean it is correct to use it?

Children are left home alone after school while both parents go to work. Children are fatherless or motherless, forcing mothers or fathers to work with no energy to raise the children with the love they need. We were the me generation. The current generation are the rights generation. Fortunately, some of the current generation are more intelligent than our generation and see the problems that are a result of putting "me" first and are working to counteract our actions.

No one has the [B]right[B] to bear children, it is a gift. Children are not material objects that we have a right to own when it is convenient for us; Nor are they born to meet our needs. They are born for us to serve. They are human beings, who when born are totally helpless and dependent on their parents for nurturing. Young girls are having children in High School before they are prepared themselves to raise children not because they want the child: they want a child because they lack the love they never received themselves as children. Seems a heavy burdon to place on a helpless infant.

When society accepted the premise that children are a right, rather than a gift, and accepted the method of freezing embryo's they opened a Pandora's box. Only a human embryo can grow to be a human person. It is in the genes of the embryo. Now society is willing to go another step down the easy path and choose to demean what it means to be human by denying the human embryo the right to life, because the adult values his life more than the gift of life in the embryo.

If this is not evidence that the devil is a real entity at work in our society, I don't know what is. Man is fallible, and will rationalize what is immoral in society to be moral when he wants it bad enough. Is the answer to man's mistake to continue to meet out needs by benifiting from the mistake or to refuse to participate in the results of the immoral act?

I was repeatedly sexually abused by my father. Would it be right for me to use this fact to abuse my children and blame it on the fact that it was the only way I knew how to be a parent? No, I must hold myself to a higher standard of knowing what is right and what is wrong and change the behaivior. Society, however, would excuse any behaivior I engaged in, ie., had I chosen prostitution, drugs, etc. because I was driven to it by a bad childhood. Society would encourage me to make my father pay for his actions by sending him to jail or fining him in a court settlement.

The devil is hard at work tempting us to believe we are not responsible for either societies actions or our individual acts. Looks to me like he is winning.

Vicky

excellent post paula
 

glad to see it
-rick

I didn't post it for the stem cell part - I liked her story and especially liked the fact that she "gets" the whole picture" about treatment development, including what a patient can contribute.....plus she mentioned us.....lol

It's a recap not an opinion of stem cells, or at least that was what I was thinking.




paula

Excellent article
 

Agree - it's the author's history with the disease, plus her grandmother's story that makes this riveting. Great post.

This may not be a popular opinion --

If the "devil" is at work here, it's my opinion that "work" involves convincing otherwise well-meaning people that it's a "sin" to use the knowledge we've been given to pursue scientific solutions to the problems that face mankind.

The leftover embryos from in vitro fertilization are destroyed anyway.

Not a single baby has been "saved" by the government's refusal to increase funding for stem cell research.

I don't know if there's a cure to be found in embryonic stem cell research or not. I do know -- beyond a shadow of a doubt -- that if we don't look, we won't find it.

Ms. Richman's article was excellent, and I've written to her to thank her for it.

Dear Paula, Radioguy, Jean, and Everett,
 

I will have to assume you read my post Title and not the entire post. The only part of my post you chose to comment on was the stem cell issue. I also started my first post with discussion of suggestions the author could do to learn more about her illness and how she might be able to help the entire Parkinson's community.

I suggested in the next paragraph what most studies have stated about those with the genetic portion of PD and what is considered the most effective treatment today. I did not tell her she should do any of my suggestions, but only attempted to share some of the studies I have read.

I do not agree with the majority of Parkinson's patients that the one of the most important political issues is finding the cure for Parkinson's disease. I wouldn't even consider it one of the top ten. I watch the news at night and see the conditions that the cultures in Africa and the Middle East live in, hear stories of how many Americans are without healthcare, and the poor scores of our American students and how the American education system is suffering in comparison to the education received in other countries. I do not spend my time complaining about my Parkinson's disease and the quality of life I lead. I have educated myself to understand the nature of my disease and accept what today's scientific community is able to offer.

If you think Parkinson's Disease is the most important political issue, I would suggest you spend some time in the inner city schools of some of America's largest cities, where the majority of the students are immigrants who have come to America to escape a life of sub-human conditions. I am fighting a case of pinworm, from spending time at such a school, volunteering to help students learn music, an international language.

I do this on my good days which are getting farther and farther apart. But as long as I can contribute to society I will. And on the days I can't I will be grateful for those who return to me what I have tried to give to others.

Since many of you like poetry on this site, let me remind you of a poem you probably heard in elementary school. It has had a big impact on my life.

Robert Frost (1874–1963). Mountain Interval. 1920.

1. The Road Not Taken


TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth; 5

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same, 10

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back. 15

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Love,
Vicky

who me?
 

;) Vicky,

Why don't you write to Phyllis Richman and feel her out about how much she knows about genetics. She said it was because of patient involvement that she is "coming out."

Who better than you?

paula

Hi, Vicky.

I did, in fact, read your entire post. I generally do not comment about things that I haven't read in their entirety.

I think Ms. Bachman is doing a WORLD of good by going public. By a public airing of her disease, perhaps someone reading the Post will recognize the symptoms in him or herself and get some care. Call it "lighting a candle" instead of "cursing the darkness." We all fight this thing in our own way. What's right for some may not be right for others.

I'm wondering where in my post you saw me suggesting that PD was the most important political issue.

I do think there's potential in stem cell research. And I also believe that people who want to impose their religious beliefs on others are responsible standing in the way of that potential. This is not directed at you, neither was my previous comment. It's my opinion. That's all it is.

Thank you for caring about the children, and good luck with the pinworm.

Bill

Dear Paula,

As you said in your post, "plus she mentioned us," so I assume she will read the post, and no doubt, since she admits to reading them in the past, would be hard put to have missed the subject in the past.

Who better than me? Just about anyone on this forum. I am known and disregarded on this forum, because of my prolife beliefs. As one poster wrote, "If the "devil" is at work here, it's my opinion that "work" involves convincing otherwise well-meaning people that it's a "sin" to use the knowledge we've been given to pursue scientific solutions to the problems that face mankind." Radioguy. Therefore I must be considered a kook, and everything I am should be disregarded. I know you mean well, Paula, but I tend to be cursed by emotional potshots by persons like above.

How many of the people who posted on this site ever participated in a Parkinson's walkathon, even those with relatives who have Parkinson's disease (discluding caregivers, obviously they are involved because of their carepatient) before their diagnosis? The author admits to waiting 7 years to come out. Now that she is having difficulty working it has become a priority for her. Same for Michael J. Fox, God love him, who abused his subscription drugs, in an effort to keep his illness a secret. It has left him suffering now more than need be. I understand Parkinson's disease will eventually kill me. But I won't let it change me, including my spiritual beliefs.

When I work with the children, and they see me shaking, I explain why. They tend to assume I am afraid and I need to reassure them that I am not to get their full attention. I have the support of the teachers throughout the schools I volunteer at as well as the principals.

Were more of us to allow ourselves to be seen in public places, as volunteers, instead of attending congressional conferences and seeking power, like so many other lobbyists, the American people may be more aware and sympathatic to our problems.

Love,
Vicky

Vicky
 

I had to think awhile before writing this and I'm still not sure what I will say. Your pain is so great that there is little I can do from here other than to care about you. It's not much and I wish I could do more. But it is sincere. Perhaps it will help. =Rick

Vicky...

You said... "Radioguy. Therefore I must be considered a kook, and everything I am should be disregarded."

One more time -- point to anything I wrote that indicates that.

I'll say it one more time. I think that people who want to enforce THEIR religious beliefs on ME are standing in the way of research for a cure.

Are you one of those people? If you are, then you have to justify that in your OWN mind. If you think that the embryos left over from in vitro fertilization are BETTER scraped into the garbage than being used for research, I'd love to hear your rationale for that.

Your pain is no greater than anyone else on this forum. I'm merely stating my opinion. And, as you will see if you go back through my posts, my comments were not, were not, were NOT directed at you personally. When I posted my original comment on the subject, I had no idea what your stance on stem cells was. I do now, however, and I think you are wrong. And I think that because people who believe the same as you have the ear of the President, this important research is years behind where it SHOULD be. I get to think that. It's my opinion. This is America.

Be well, be happy. I know you've been abused as a child. I know you have issues. I know everything I know from reading your posts. Having been raised by loving parents, I can not begin to imagine your pain. But I also know this is a bastard of a disease and I am willing to do anything -- ANYTHING -- to help find a cure or at least better treatments. You have a right to believe whatever you want to believe. But when your beliefs get in the way of curing MY disease, I get a little cranky.

I'm sure you are a lovely person, and I hope you will accept my comments in the spirit of commonality in which they are offered.

I don't believe for one moment Vicky has not influenced my thoghts on stem cell research. It is one thing to have a belief in them and another to hear what the belief of the other side is. All of us have to decide what we feel is best for us and insure we make that decision known.

Disease is not a gift from a god it is a curse of man.

We need her to keep our morale up while I don't share her views on stem cell research I share many of her other views.

Respect her and we respect ourselves for the fight to regain control of our lives is out there somewhere for us to find.

Don't cry for me Argentina (song from Evita)
 

Dear Rick,

Please do not think I am in pain over past issues. My use of the childhood abuse example was to make a point, not to invite sympathy. That was a pain I dealt with years ago, and have put behind me. Just as I have also come to terms with living with Parkinson's disease and accept what current science has to offer rather than request the American people fund a cure for my disease.

The American people are already pounded by TV ads requesting funding for Lupus, MS, Breast Cancer, other cancers, Heart Disease, diabetes, cystic fybrosis and too many other diseases to mention. Americans have been so saturated by ads meant to pull at their sympathetic heartstrings, that they now turn off when the requests are made. They have families to feed, their own health crisis's to deal with, children to clothe and educate. They are not at fault anymore than I am.

I look at the disease as an opportunity to discover the strength of my beliefs. I believe if there was a way the American people could help people like ourselves they would do it at the drop of a hat.

Rick, your sensitivity is deeply appreciated as well as Thelma's, who seemed to be closer than any other response to my post; to understand my right to state my opinion as respectfully and thoughtfully as I am able. Thank you Thelma.

Radio Guy and Jean,

"I'm wondering where in my post you saw me suggesting that PD was the most important political issue" Please explain to me where in my post I addressed your remarks at all in my first responce. As I recall the article summarized by Paula, about which I was posting, mentioned the view of the author that the cure for Parkinson's disease lay in politics and that the private research industry does not have the money or desire to research for a cure.

If the "devil" is at work here, it's my opinion that "work" involves convincing otherwise well-meaning people that it's a "sin" to use the knowledge we've been given to pursue scientific solutions to the problems that face mankind."

Hitler, who considered himself a well meaning dictator, perceived the Jewish race as something to be exterminated for the good of the German people. He almost succeeded exterminating a race of people who have given great gifts to the world as a result of their culture. Hitler's justification is no different than that for using embryonic tissue. The Jewish people were treated like lab rats because the Hitler regime deemed that the Jewish people were not really human like the rest of white Europeon society. He did not succeed because the rest of the world saw the evil of Hitler's argument and chose not to accept it by conquering his regime. The knowledge learned from the research on Jewish victims of the holocaust was either destroyed or locked away and deemed not feasible to be used due to the methods that were used to get the scientific knowledge. One example was a research test which immersed Jewish holocaust victims in cold water and monitor them until death to discover how long Hitler submarine divers could survive in the cold waters. Even science can be expected to adhere to ethical standards, with or without Christianity intervention.

[B]"I'll say it one more time. I think that people who want to enforce THEIR religious beliefs on ME are standing in the way of research for a cure.

Are you one of those people? If you are, then you have to justify that in your OWN mind."[B]Are you telling me to keep my views to myself? " If you think that the embryos left over from in vitro fertilization are BETTER scraped into the garbage than being used for research, I'd love to hear your rationale for that. " Are you asking me to speak about my views?

Obviously, I cannot change your athiest beliefs, nor am I trying to. I am exercising my right of free speech to disagree with the majority of persons on this site. As Theresa stated, I am not trying to persuade anyone that my view is the right view, only that my view is different and equally has the right to be seen and discussed.

You tell me you never called me a kook, however, the dripping sarcastic tone in your post as quoted above is as disrespectful as if you had called me a kook. You are aware of the nastiness of your abusive post by trying to explain it away; "But when your beliefs get in the way of curing MY disease, I get a little cranky. Funny, I thought we all had the same"bastard of a disease". What isn't funny is that one Parkinson patient feels he has the right to belittle another Parkinson patient for having different beliefs. Not to mention another, supposedly more experienced patient, thanking him for his belittleing behaivior and encouraging it further.

Vicky

I`m a Christian too...but sadly no Saint
 

Oh gosh...I hope my post doesn`t inflame this situation.I truly don`t wish it to and sincerely hope that it is received in the spirit with which it was written.I wish you could all hear my words rather than read them,for you would know my voice is gentle as I speak these lines.A fault of the written word is that they are unfortunately unaccompanied by facial expressions,physical gestures and sounds...so I know from personal experience how innocent remarks can be so easily misinterpreted.

Firstly,when I read the original post I found it to be a concise and beautifully written account of life with this condition...simply that...and personally didn`t feel any part of it leapt out at me enough to evoke any personal beliefs or issues. That is not to say that those amongst us,who are passionate about certain ethics are wrong in airing their views.They so rightly have the privelege to make a comment and put their opinion forwards.

But it saddens me so much when wrangles are publically aired.Perhaps private mail is the kinder alternative for discussing, and hopefully healing misconstrued phrases.I am just trying to be sensitive here to all involved,including those people who may be hanging around in the background,plucking up the courage to join us.

This site is my sanctuary...and whilst I accept there are bound to be confrontational issues,and human nature drives each and every one of us into a situation where ,if we feel "wronged" we need to put it right.. we so often behave rashly,forgivably so.

Vicky,I have to hold my hand up and say that I am guilty of not fighting the PD cause until it affected me.My family,too,whilst being compassionate to others,be it poverty,disease,loneliness...whatever,PD didn`t feature in their minds until I brought it into the home.This is not a reflection of selfishness.It is simply life and I so admire your depths of belief and your courage to stand up and fight for them.I too ,as a teacher was upfront with my children,they monitored my handwriting and gave me marks out of 10 after I had written the date on the chalkboard. Sadly I have since been forced to retire.I am sure we are all in the public eye at some point during the day/week/month but not all individuals are able to deal with this exposure as well as others.
Maybe it is something we can help each other with ,here on this forum.

But as a Christian,I need to say this.I so have the desire to make right all the wrongs in the world,the inner cities,the orphans,the homeless,the drug abusers.I too,wish that we could live a whiter than white life,where all our decisions were pristine,and squeaky clean.But we are not God.We can only do our own little bit as best we can to alter some small part of the world,and that is being realistic.And we are all going to keep on making mistakes,and be faced with unsavoury choices at times.That is life.REAL life.

Also ,I must add that at my church a few years ago,we had 2 speakers.They were condemning the use of stem cells.I looked over at my beautiful daughter,an ideal candidate for PD and I was blazing."How could these two healthy people stand up there and brainwash folk with their opinion" was my reaction and I left the meeting.
No...I don`t believe in life being taken simply as a means to help one sector of the public,but scientific progress made with a sensitive and as ethical approach as is possible,is surely not wrong providing there is no suffering.

After all...didn`t God make the biggest sacrice EVER? By allowing the untold suffering of His beloved Son...when I see the harrowing scenes of a crucifixion I really struggle with this issue.
Vicky...I still as a parent find it hard to get my head round that one.

Finally,and sorry..I didn`t mean to say as much as this,whilst I believe in life,all life...the best quality of life that one can have....I will also shock some folk by admitting this.
I will fight to the bitter end with this disease...but one thing is for sure.When the quality of my life is no longer evident,I have made up my mind that THAT is the time I will "go home."
This too is against the Christian grain...but I believe that actions ..any actions...committed with the most loving,best of intentions,are to be forgiven,accepted,respected.


Yes..I am proud to have a faith in God ,but I know too,that being a Christian does not make me able to fix it all,behave always in a saintly manner,be all things to all folk,make me whiter than white.And it scares me,that those who don`t have a belief,may perceive those who do in a bad light,if we project this image that our lives and thoughts are untainted.They are SO not.The bible is my blue print for my day to day life...but hell...it`s a struggle at times.And I fail so miserably...so often.


I am human.

x

There will not be agreement about this issue, and I think many are torn about it. I'm not convinced it's the answer, but it's coming - and needs to be regulated. I do have doubts about mixing our cells, and doing something that "invasive" to our bodies.

There will be many experiments (aka clinical trials) to attempt these novel treatments and I am focusing my energies not on the ethical issues of the materials used, but in the ethics of treating patients humanely, to recognize the human participant element vs the animal subject. I've stopped arguing the moral issue, and settled for "I don't know, but I'll stay educated." If someone is going to be brave enough to do something highly invasive to find a treatment for me, I want that person and the treatment to be regarded for the importance of what is learned, not how much profit can be made, although the race is on for future business interests.

If embryonic stem cell research is successful, then the real decision has to be made, and that is pretty far down the road. Because I do have faith in a higher being, I think that the answer will come in a biologically delivered manner. It will either work or it won't. It's just too hard of an issue for me to ever come up with an ethical answer that would apply to everyone.

Big pharma is not happy to be where it is...it always wants more and to get bigger....it's' greed. They are never financially satisfied; must always show growth. Many injustices take place because of too much emphasis on the business end and not enough on the human end.

Besides all that, we each have a vote. We don't know whether either view is right or wrong because we really don't know if cells are meant to help us or if destroying an embryo is "killing" in the eyes of whomever will "judge" us - as in a person's religious beliefs. I do know that both sides are entitled to their opinion and to vote. The vote will decide the issue, and the choice is ours - that applies to both Christianity and democracy.

It's hard for me to figure out why we are put in this position - of having to try to morally figure this one out. My conclusion is we can't - it will be a biological conclusion first, then a personal decision. Perhaps the real ethical judgement will result from how we arrived at our conclusion, and not so much the conclusion itself.

paula

I posted a disagreement with your POV, and you saw it as "belittlement"?

ATHEIST??? I don't agree with you about stem cells and now I'm an ATHEIST???

Good lord!

You have no IDEA what I believe in the realm of religion, Vicky! You've never talked to me. You've never asked me a question. You don't have a clue what I believe about God.

I will continue to be an advocate for finding a cure for this disease. And you know what? In 2009 there will likely be a Democrat in the White House. There will likely still be Democrat majorities in both houses. Stem Cell research will EVENTUALLY get funded to an appropriate level. Poll after poll shows it's what the American people WANT!

And when and if the happy day comes that a CURE is found through stem cell research...

I will support you 100 percent if you decide to partake of it.

I said it before, and I'll say it again. You have the right to believe WHATEVER you want to believe. One can be Christian and believe in stem cell research. ME, for instance. You have the right to whatever treatment for your disease that you choose. But you do NOT have the right to stand in the way of MY getting the treatment I would choose... or keeping that treatment from being developed.

Hi there

This is an intelligent and thoughtful discussion on a subject that is controversial and where it is understandable that people will have very strong opinions one way or another.

We respect your right to have a discussion like this and dont in any way want to intervene, other than to ask that you disagree respectfully and PLEASE refrain from making negative personal comments about other members.

I am therefore going to request that such negative personal comments be edited out by those who have made them so that moderator intervention is not required.

This is a valuable discussion and so lets try to keep it on track please!

Chemar
 

Battle over, Admit that I made a mistake assuming Radio Guy was an Athiest and my opinions and philosophies do not belong on this site. Gruess I will always march to the beat of a different drummer.

Vicky

Your opinions and philosophies DO belong on this site, Vicky. So do mine! That's what this site is for.

You might consider, however, not jumping to conclusions about people and their motives when they disagree with you.

You both have valuable opinions to add to a valuable discussion

I hope you will all benefit from this thread as you reflect on and share information and experience with others, whose opinions are equally valuable

This is the essential purpose of these forums....to exchange information and experience..... and we need more in depth discussions like this one, where everyone can feel comfortable about sharing their view, whether philosophical or experiential, without there being any concern at a negative response on a personal level. Debate is healthy and encouraged, and disagreement is an essential element in intelligent discourse, but you are all able to do so with civility and respect.

I look forward to seeing this conversation resume...it IS an important one

these dialogues are important......
 

they help the undecided make up their minds.

Vicki and Radioguy;

The important thing to me is you both would be at the front of the line to help the other one if they ever needed help.
We all have respect for each other's views. WE are ALL guilty of getting caught up in the discussion at times.

It is important to remember that we are all brothers and sisters here. That is the only cogent fact in the final analysis.

Charlie

With an election just ahead, it's going to become a big issue again. There will likely be another vote in the senate sometime soon, and if vetoed again with no override, it will continue on to the 2008 elections.

I feel that the biggest problem with conversations like these (and they have come a long way - i can remember a time when a comment from the Christian perspective would have been booed off the forum) - is that we categorize people and have of course become polarized and hostile toward each other in our society.

In reality, there are many people who are in favor of stem cell research and still call themselves conservative and vice versa. There are many people of faith, who are either in favor of it, or face indecision and reservations. One can only be true to themselves and feel as they do.

Assuming people who are in favor of stem cell research are aetheists, which Vicky has clearly stated was a mistake to do and I don't use this for anything but an example. is not unusual because of how we feel we have to cast our lots for either one entire socio-political view or another - package style.

There are many independents out there, who do not and will not be categorized.

One thing that does worry me, tho, is the race for profits if the law changes on this research. As I have been for quite some time, I 'm very concerned that researchers will become engrossed in cell therapy research and come up with nothing less for people like us who need something now.... Like pump delivery systems to carry us over.

Paula

Awwwwww, you guys!

I'm grillin' steaks this afternoon.

Who's comin' over?

Corn on the cob, too! :D Plenty for EVERYONE!!! :grouphug:

But back to the conversation --

I don't know if there IS a miracle to be found in embryonic stem cell research. I do agree, however, with Story Landis at NINDS that we will NEVER know what's behind the door if we're not allowed to OPEN the durn thing.

People of faith have every right to believe whatever they care to believe. And if folks who are against embryonic stem cell research are ALSO against in vitro fertilization, then I give their POV a lot more credibility. If the same folks who want to stymie the research were ALSO pushing for laws against the incineration of the unwanted blastocysts after a couple has a successful in vitro fertilization procedure, then I also give THAT person credit.

But to stand in the way of using these discarded cells -- and that's what they are, cells -- not cute, cuddly, bouncy little babies -- and NOT say anything against the fact that these cells are going to be destroyed ANYWAY strikes me as disingenuous.

The disposition of these cells should be entirely up to the family. And stem cell research SHOULD be one of the options available to them.

Of course, if your argument is that life begins at the moment sperm meets egg, then I suppose there really isn't room for discussion on this. But, if that's your opinion -- that's YOUR opinion.

The vast majority of Americans see the potential here. When we have leaders that aren't obliged to a right wing evangelical base of support, then hopefully we will see some progress.

radioguy
 

I can only add that I feel the same way as Radioguy - and he writes much more eloquently than I would on the topic.

However, I must say that I don't understand how In-vitro fertilization can be supported - where many many excess cells are created - but the use of the unused cells for embryonic stem cell research is not supported.

Why is it ok to create excess embryos and then destroy the ones not used? Why is cell destruction ok but cell donation for research not ok? Just rhetorical questions.

(This is not directed at anyone on this board!) Just my thoughts in general.

By way of introduction I share the following poem entitled, "My Clock Has Tremors".
 

http://www.youtube.com/watch?v=b7_IJyt4IiQ

I'm new to this site and will use it to seek information, examples of personal courage and resilence as others walk this path with me.



To those who have information, courage, resilence - my e-mail is open, please call me Kathleen.

Because we are a world filled with the thought that we are the best of all. You in the states and us in canada are no exception.

Hell it is not long ago we let go of the death penalty. Then we send troops to Afganistan. Not to be killers of course just to kill or be killed, see the difference, I don't.

A short time ago we watched Sadam being hung on television. Good show eh. Not many spoke of what this did to our kids who saw it.

All of our news especially CNN is occupied at showing the killings all over the world of anyone who is caught on film. Good shows eh. Up to the minute blood guts and gore all the better.

Try the other networks and then sit back in your living room and watch the faces of either your own or others kids and see what they express in their faces.

They don't even blink at whatever gross event unfolds before them. It's only makebellive and they know it but it is not the end of it.

It is only when the TV show becomes reality and then watch the kids. They run from all directions to kneel and lay flowers on any pole where there was an accident as a memorial and they visit and weep and get their pictures taken to remember by and then go where ever they were headed for in the first place.

They live in their make believe worlds now. Did they make television or did television make them.

Why do we believe all of the face to face lies that are being told to us today by our government officials. Is it because we are the ones who are face to face. they are on television screens. There not talking to anyone in person but to millions of people and especially to those who will either believe them or are already on their sides.

So then why should anyone care about the unused babies waiting for parents in the test tubes of the nation. Hell there not on tv. If it was imortant it would be on the best television news station of them all with the very best reporters of them all. You know of whom I talk.

Anyone under the age of say 35 to day really doesn't care. You can't get a conversation going no matter what the topic is and hold them unless of course it is a subject that they have formed opinions on and to try and change or even influence that opinion you have to quote those [names] that share your belief.

Even here we don't tell much about ourselves and when others take the time to try and understand where we are coming from they had better be right or else.

I am often missundestood as I hate to type but love to talk. I have had numerous emails asking me to explain and while I answer some most I don't and put it on site for where there is one there probably can be others who don't know me.

But that is my fault and mine alone. Not the fault of the other person. We are all getting too close and yet trying to remain aloof from the forum in order not to be one of those people who are constantly on writing about one thing or another. Not me lol

We need all of those who come here to read and then leave without as much as a hello to stay around and help fill in our blanks.

I guess if we are good enough to read we are good enough to talk to lol lol

What was thils rant all about I have lost the gist of it.

Must be getting old.............................................

I believe your rant was about the generation gap Thelma. I hope it felt good - that's what they are for. It felt like a vent just reading it. I won't argue with any of it.

Kathleen, after going to youtube and seeing you I realize I met you at PAN. I believe you checked your email on my computer and we talked some.

Welcome to Neuro Talk - best PD message board on the Internet. Not that others aren't outstanding too.

Kathleen, you didn't strike me as shy...I know you are sincere....nice to have you here.

paula

Yes, Paula - you did share your computer with me...
 

Ah, a fellow PAN person.

A quick follow-up to my Washington DC experience....and a personal reminder of how quickly one (I) can go from empowered to vulnerable.

The hotel had debited my account $1000, the person who tried to fix-it doubled the debit --- I was out $2000 that I didn't (and don't have).

My train was to leave at 4:05 PM --- it seemed that the hotel admins. thought that I would simply give in, take the train home, and try and fight the problem long distance.

While I did not feel particularily well, I wasn't ready to walk away. 3 1/2 hours .... several faxes from my bank, and a missed train.....the hotel reversed the charges correctly.

The hotel also provided a room for the extra night I had to stay in DC.

This experience has left me troubled and good and mad --- and also focused on the fact that we (the PD community) do not have the time to break-up into fractions .....for if we do (pro-life, pro-stem cell, pro/anti ...) we will be picked off one-by-one - in the profound issues of wealth/proverty; housing/homelessness, health insurance/uninsured, accessible transportation/isolation.

womb to tomb --- honor all of our lives

Our efforts for recognition of our lives and our right to be free and fully human are intimately connected with others who suffer injustice and who struggle for fairness and human dignity. Suzanne Pharr

oh dear
 

Kathleen what a bad experience. No one was satisfied with the hotel this year; I don't think we will be going back there. It sounds like such a spoiled complaint now, but you had to be there...

I wouldn't have been able to cover that either. Outrageous. Between that and the weather, you must have had a very frustrating day. It was a long one for everyone, but yours in particular, was unacceptable.

You'll soon learn that we each have our "pet" activism issues - it's a nice mix, and lots of go 'forth and discover'.

The employees of the hotel were still learning I think, including English.

it'll get better,
paula

I've read read and reread this thread before thinking of posting, I'm pro life in a way as i dont beleive in abortion unless its for medical reasons or rape etc. but i'm also pro life in my husbands life, if these were aborted fetus we were talking about being aborted for the sake of science and to help people with diseases not just pd but many many others than no I would be out there screaming Stop It, but this is garbage that can save lives if utiiized properly,we had an article not to long ago in canada where they have made breakthroughs in the use of the cord the sac and the fluid ,they are all rich in stem cells and may be the way to look in another direction untapped so far. So MJF if you browse this place like you did braintalk1 listen up it's people like you who can make the differnce we need strong people in any country who can help in any way. I was dumbfounded when i found out one of our most prolific and popular (to some) Prime Minsiter suffered with and died with parkinsons with nobody but his own family and closest friends ever knowing, this man could also have raised millions and done a lot for parkinsons reasearch here in Canada I have sent an email to his son who is just now getting into politics that maybe just maybe he should think of this and how his father might have lived a better life if somebody will help fight for these disesase where we have be told for decades the cure is just around the corner.I beleive it is just around the corner but dammit somebody out there has the cure I know it and politics just get in the way its time for them to stop and let the scientist find the cure that I think most of us know could be found it they allowed them too anyway I'll be gone for a bit take care :grouphug:

How about we try this?
 

How about all of you in favor of stem cell research go to the labs that help women to conceive? Each of you stand in front of the freezer, and decide which of the cell gets to evolve into a baby and which of them will be implanted in a mother's nurturing womb. What shall you base your decisions on? Maybe because you like the color of one better than the other? Perhaps you have a talent for telling which of the cells will be boys and which will be girls? Or better yet, one of you has the talent to know which of the cells has healthy DNA and which has mutations? After all where is the logic of implanting damaged DNA to replace damaged DNA?

This forum was created for one thing and one thing only. For Parkinson patients who need a venue to make up for the fact that due to some unknown reason they were not allowed to acheive all they presumed they might achieve because of the disease. Sorry but life ain't fair. You can continue on with your life dispite your limitations and do the best you can. Or you can excuse immoral behaivior, by disobeying God's law , and destroy a life that science created for someone elses needs, not for the child.

Now I will not post anymore on this forum as suggested by my Reverend with whom I had a long discussion through tears after church. After all, he reminded me, the way of Christ is not easy. He is right when he says you have made up your minds already and be sure you are absolutely right. I receive no support of anykind and share nothing in common with any of you. Enjoy your bar-b-que.

Vicky

vicky
 

your very wrong dear we are all here to support each other not to agree with everything they say or think I have a lot of opions not all popular but they are mine and you have yours, your entitled to them as much as I;m entitled to mine not having people agree with you is not a show on nonsupport but eveyone has there own feelings on this topic, it has always been and will always be a very hard one for many Good luck and I hope you stay nobody wants to be in a place where you have to agree but should all be allowed to disagree if warranted thats called being human I also think that personal attacks are less than dignified and should be left out of here steff did nothing to you to warrant that attack on her and her children use the kiss method here it works better

what would that solve?
 

vicky, I think we have been trying to understand you all day. Bullying won't work. People think differently, here's another example:

Bush can reconcile stem-cell research and religious beliefs


2007/3/4
By Michael D. Kerlin Special to Newsday

good grief..i got lost....here's the link...lol

http://www.chinapost.com.tw/editoria...D=103797&GRP=i

paula

article
 

okay, I for one will agree to stand in front of the freezer and decide which ones get implanted and which ones can serve purposes other than being poured down the drain. (my husband says it's easy to decide which ones --the ones in the front of the freezer)
and who is in charge of what the purpose of this forum happens to be? I thought I was here to learn from others who have walked this path and to share the new breaking science with one another, to support each other as best we are able, maybe make a few friends along the way--oh, and to whine sometime, too. thanks for enlightening me that I have it all wrong. those nefarious unconscious intents...

others who fervently believe in their religion do not share a universal belief of when life begins

the original author's use of infectious diseases to contrast with the non-advances in PD may be more correct than you think--there are many reserchers/scientists who think sporadic PD may be infectious in origin(remember Teresa? the episodes of infectious encephalopathy which left patients with parkinsonism?) or a latent infection could be triggered by environmental substances or toxins...(read Paul Ewald)

Okay, back to the original proposal--after I stand in front of the freezer to make these decisions (I really want this job!) must I prove I have damaged DNA to qualify ? I do not want to drink a beer and eat brats. Okay, maybe the brat, but I really do not like beer.okay, maybe carta blanca beer sometimes. Perhaps I could have a gin and tonic instead, except I do not like to drink Gin in cold weather--may I wait until the summer, or at least spring?
when did this thread morph into degoratory mischaracterizations of members who are posting? as my mother would say "stop it already".
madelyn

ok....self editing is needed again please or mods/admin will have to intervene

I am asking that this thread return to being an OPEN discussion, not a platform for negative venting about other members who dont agree

PLEASE let the conversation here return to a respectful one for the sake of all the members here who treasure the right to debate without personal attack

feel free to edit anything in my postings I dont think i said anything but I'm not impartial thank you

Chemar don't worry about this forum going too far it doesn't happen. Sometimes we get a bit tense and let our feelings out but not as a regular thing.

If you let it go it's natural route it will all blow over and get back to what it has become. the best forum on the web and not because of this site or Braintalk but because of the people who post here. They are the forum and it is not necessary to enforce any rules on them as they have over the years and long before this site was ever thought of governed themselves accordingly. Many of these members have been around since 1996 and are still here.

So don't worry about them talking about each other as it is done from caring and respect else we/them would have disappeared a long time ago.

Like the kids would say.......................were cool girl

I'm cool too Thelma :D

It is because I recognise that this Forum IS its members that I do want to ensure that members arent going to be offended or upset when posts are directed at them in a certain tone

Because we do respect this forum, we try not to intervene unless we get reports or are alerted to a potential problem. It is out of respect for the members here that I have not edited a single post on this thread, although some are bordering on breaking the guidelines.
~edited to add: correction.... an edit has been required to one post as per admin guidelines~

So, I am not talking of the disagreement and even some heatedness.....it is that kind of topic......but when members are named and things posted to them in a personal way that could cause upset....well, then I gotta keep my (cool) eye on the discourse:cool:

over and out for now
The Cool Chemar :D ;)

That goes for me too Chemar...what onendona said
 

I do hope there is nothing in my post that has caused personal injury.There certainly was no intention and I would be distraught if anything I have said,causes hurt to someone.I am sad to see that I have been personally brought to heel in one of the posts and that my words also have been misinterpreted. But out of sheer respect I do not wish to continue this persons pain.I so wish I had the words to comfort them.
However,in defence of my beliefs generally,can I be allowed a moment to make it clear that I have no strong opinions about stem cell research anyway...not at the minute.I am not at that stage yet to really allow it to govern my thoughts .My flight from church that day was immature and I admonished myself for behaving that way.And I have the greatest of respect for life.A few years ago,laden with drugs and in my 40`s I fell pregnant.
Abortion was never an option.Instead as a Christian I placed my faith in God and prayed that I would keep this much wanted baby.
Despite my health being in the balance,all I could do was plan for this child.
Sadly I lost the baby.
Yes...I have two miracles.And I do my best to show them the best route in life...but out of love,not God fearing.
May I also apologise if anything I have said has upset anyone and by the same token,I have enough love and compassion in my heart to forgive anyone who has taken a "pop" at me.

I guess I will think twice before posting in the future.

Chemar....thanks for your iintervention.
x