Embryonic Stem Cell Research

[vlhperry]

Below is a sample letter for anyone who wishes not to support stem cell research. I would like to see if PAN would consider adding it to their letter list if they truly represent allpersons with Parkinson's as they claim.

Dear :

I have lived with Parkinson’s disease for ** years. ***** (describe your symptoms here.)

The group, PAN or Parkinson’s Advocacy Network is urging everyone with Parkinson’s disease to write their Congressmen and urge them to vote yes for embryonic stem cell research. They claim to represent all persons with Parkinson’s disease.

I recently attended a PAN recruiting workshop in Milwaukee. The workshop, staged to motivate Parkinson patients to “self-advocate.”, for what the patients believed would cure their illness. The sponsors for the workshop, usually pharmaceutical companies, pay the cost of the workshop. The main speaker, usually a local known Neurologist who specializes in movement disorders, gives a speech about how close a cure is if only they had the money for research. The “expert” always points toward the need of embryonic research funded with Federal money to be the quickest source to find a cure. They point out to the patients, many of them with low incomes, that if a private research company is the first to unlock the secrets of embryonic stem cells only the rich will be able to afford treatment.

Ninety percent of PD patients with idiopathic PD (of unknown origin) experience psychiatric complications, including major mood disorders (major depression, dysthymia, or bipolar disorder); adjustment disorders; disabling anxiety syndromes; drug-induced mood changes; pathological tearfulness; dementia; apathetic states; psychosis; or delirium. (Psychosomatics 2000, 41; 15 – 23)Is this the group of persons you would want advocating for your health?

I have educated myself and have discovered:
 Human embryonic stem cell lines have proven difficult to develop and maintain.. (Please refer to the New England Journal of Medicine issue 328, 2004 (pgs. 1353 – 1356)
 Pure embryonic stem cell cultures are difficult to obtain. (please refer to “Frequently Asked Questions” International Society for Stem Cell Research.
 Embryonic stem cells are unstable and mutate in culture (President’s Council on Bioethics, January, 2004.)
 Differentiation protocols for many cell types have not been developed. (NIH Update on Embryonic Stem Cell Lines” August 27, 2001.
 Cell types that have been differentiated may act abnormally (Diabetologia 47, (2004) 499-508.
 When embryonic derived cells have been placed in animals, cancerous tumors have formed (New England Journal of Medicine, 350, (2004) 1351 – 1352.
 To address the problem of immune rejection, researchers have proposed cloning individual patients to obtain compatible embryonic stem cells (“The Ethical Validity of Using Nuclear Transfer in Human Transplantation” Journal of the American Medical Association 284 (2000); 3175-3179.
 Besides the ethical inadmissibility of human cloning, some researchers have questioned whether cloning with truly solve the rejection problem. (Senate Commerce Subcommittee on Science Technology and Space, March 27, 2003.
 Even if each of these problems were somehow solved, at a cost of over $200,000 per patient, only the very wealthy could afford the procedure. (Proceedings of the national academy of Science 100, (2003) 11924-25.

I have no problem with adult stem cell research as positive outcomes have resulted in 9 FDA approved treatments for various diseases.

Please support the President by not allowing public funds to be wasted on embryonic stem cell research.

Sincerely,
****** (Your name here)

[Paula]

Ninety percent of PD patients with idiopathic PD (of unknown origin) experience psychiatric complications, including major mood disorders (major depression, dysthymia, or bipolar disorder); adjustment disorders; disabling anxiety syndromes; drug-induced mood changes; pathological tearfulness; dementia; apathetic states; psychosis; or delirium. (Psychosomatics 2000, 41; 15 – 23)Is this the group of persons you would want advocating for your health?

Vicky,

This is obviously an invitation to start a problem. While I defend your right to not support ESCR, you have no right to ask PAN to stop, because it is their right to do so. You also have a choice whether or not to participate in PAN.

As for insinuating that we are all mentally and emotionally impaired, speak for yourself. You do not have the right to judge anyone's mental abilitiies.

I suggest you look for some positive ways to promote adult stem cell research instead of insulting people through insinuations.

Paula

[steve m]

I second the motion..Whoever doesnt think stem cell therapy either isnt the answer to pd, or whos religious beliefs forbid them from receiving the therapy..Then its simple..dont subscribe to it..dont advocate it..dont recieve the therapy when it becomes available..But at the same time respect the decisions of others who do subscribe to it, and support and advocate it

Vicky..If its souls you are out to save, you might want to try attraction rather than promotion..Insinuating that those who represent the pd community are mentally ill is not only making a judgement call as to their mental abilities..but an insult as well as a lie

[vlhperry]

Dear Steve and Paula,

I can understand your anger at my stand on embryonic stem cell research.
If you read my letter carefully, you will notice I put a source for every negative reason to not research stem cells. The Neuropsychiatric Aspects of Parkinson's disease came directly from a paper written by your Laura Marsh, M.D. If you don't like the numbers or being tagged as a high risk patient for Neuropsychiatric illness address your issues to Ms. Marsh.

Each fact written in my letter is backed up by a study in parenthesis. If you choose to ignore the facts that is not my problem.

If PAN, as stated on their web site, claims to represent ALL persons with Parkinson's disease, then they should add my letter as an option to send to Senators and Representatives. All persons with Parkinson's do not agree with PAN that embryonic stem cell research is the answer to a cure for Parkinson's disease. I have as much right as a person with Parkinson's to advocate for a pro-life stance as Steve, Caroline or Paula do to advocate Embryonic Stem Cell Research. I am as stuck with the disease as you are and have the right to advocate as I believe.

Since none of you hesitate to withold your views on this forum, I have every right to submit my views and the facts and studies to back them up. Do not assume that everyone thinks as you do. I just speak out my belief as you do yours.

Sincerely,
Vicky

[steve m]

I am not one bit angry at your stance on ESCR..That is your business, your choice, your opinion, and I am not going to try to sway you or anybody else to my views..I am not going to attempt to shove ESCR..religion..or even AA down anybodys throat who is not interested in it for whatever reason..Its not my call or anyone elses as to what is, or is not good for them, or anyone else..As I already said..If your religion condemns ESCR..and you feel in your heart that its wrong..then that fine..for you..dont get the therapy if and when it ever becomes available..But dont you decide who should continue to suffer from this disease and who shouldnt based on your beliefs..Not everybody believes what you or I believe, and it is their choice, and their right, to do what they feel that they need to do for themselves..PAN's ultimate mission is to help to end the suffering, and it just so happens that there is no easy solution to Pakinsons disease..The short term answer is medication..but its not the long term solution, and Im sure you understand that well, and probably better than I..And it just so happens that the options left on the table are controversial between the pro-choice and pro-lifers..That is where the line in the sand is..Whos right..and whos wrong?..We could go on and on and on with this debate..That is why it comes down to personal choice..my right, and everyone elses right to choose..and in a democracy it should be a right to choose

I also dont assume that everyone thinks the same way as I do..matter of fact I know that not everybody thinks like I do..and thats ok with me..Just dont make political decisions based on your religious beliefs as to what is or is not good for my soul..because maybe I dont think like you do

[vlhperry]

Steve,

You are angry with me for stating my position, yet you have no problem when Caroline posts PAN Action Alerts that support an opposite position. I find your stand to be hypocritical.

If you do not like my posts, ignore them. At least that is what I have been told to do when people post political action alerts from PAN.

Do you have a problem with people seeing both sides of the issue? I don't believe I listed any reason for not supporting stem cell research based on religion. I have not ruled out Adult Stem Cell research, genetic research or any research which does not call for loss of any human life. When a cell begins to divide it is alive. If the cell begins in a human egg, that life will be human. I am not arguing whether it has a soul or not.

I have as much responsibility as PAN to present other options to Parkinson patients.

Sincerely,
Vicky

[steve m]

Vicky..I spelled it out as clearly as possible

If you want to see hypocracy just read some of your posts where you clearly define your religious position on ESCR, and now you claim that your religion has nothing to do with your position

What I dont like about your posts is that you make unprovoked accusations and judgements

You are right..I should ignore you because I know better than to debate with you, and hadnt in the past because I knew it was futile

Conversations over

[vlhperry]

Steve,

I never ever stated that my faith did not influence my thinking. However, since you and others claim not to have my faith, I am making my point from an ethical line of reasoning. Embryonic research, by definition, is only able to destroy a live dividing human cell with the potential for human life. The only way to to research embryonic cells is to destroy the potential of that human life. You may not care if that potential is given a chance, but I do.

I do not accept the argument that you can take something evil and make something good from it. I have read and argued with my pastor who believes if the embryo is already dead it is OK to use it for research. If the embryo was destroyed by premeditated murder I cannot agree. He argues that the Nazi's destroyed many Jewish prisoners by experimenting on them. The Nazi researchers put them in icy cold water and waited to see how long it would take them to die under the conditions set by the researchers. The purpose of the experiments was to try to lesson the Nazi losses of submarine divers at sea. According to my pastor, America biologists have used the information from these experiments to benefit Americans and he feels this is OK.

The idea that a tragic loss of the Jewish people should be used to benefit anyone is nauseating to me. Those people did not get a choice to be research subjects. The information obtained from these experiments should have been destroyed and the research should be redone without immoral actions. The use of this information devalues every Jewish persons' life.

Killing or murdering potential human life is unethical under any circumstances. That is not a religious statement, but a philosophical one.
There are a number of projects for research that could be done by experimenting on a small number of live, fully developed humans with downs syndrome that might benefit the rest of mankind. That research is not done because it would be considered unethical. The down's syndrome people give little back to the community, in fact, the community must pay the costs incurred for the care of these patients. Yet an embryo with the potential to be another Einstein or Mozart is considered little more than garbage.

Each time we loosen our ethical perspective, we become more and more desensitized to others pain. I am not pushing my religion on you or anyone else by defending an ethical perspective. I am defending human life and am determined to not allow it to be devalued for more formed humans to prolong their life. Religion and Ethics (Philosophy) are not one and the same.

I don't expect a resonse from you or any PAN advocates because I understand I am the only one who believes this as truth. I will continue to post facts to try to sway others to see my position and advocate for allowing life to be considered as a gift not to be taken away for any reason.

Vicky

[steve m]

Steve,

I find your stand to be hypocritical.

I don't believe I listed any reason for not supporting stem cell research based on religion.

Sincerely,
Vicky

http://brain.hastypastry.net/forums/showthread.php?t=4030&page=2

Jesus makes the issue quite clear. There is no grey. You are for him as your master or you are against. The 1st Amendment may allow me my belief, but not my right to practice them. Therefore, as a Christian concerned for all Christians who are misled by false Gods, I have decided to make it my calling to save as many souls as possible by revealing the truth as the word of God states it.

I never ever stated that my faith did not influence my thinking.

[vlhperry]

Again, In this thread, I never mentioned my religious beliefs. I argued on a philisophical basis. I have never hidden my belief in Christ. Sorry you can't see beyond that facet of my beliefs. I think if you kept searching through my past posts, you might even find one I placed about my grandfather and some of my fishing experiences with him. Steve, I am not attacking you or your beliefs. Stop attacking mine.

There is more to me than just Religious Beliefs.

Vicky

[steve m]

Again, In this thread, I never mentioned my religious beliefs. I argued on a philisophical basis. I have never hidden my belief in Christ. Sorry you can't see beyond that facet of my beliefs. I think if you kept searching through my past posts, you might even find one I placed about my grandfather and some of my fishing experiences with him. Steve, I am not attacking you or your beliefs. Stop attacking mine.

There is more to me than just Religious Beliefs.

Vicky

Ohh..excuse me..not on THIS thread..And you call me a hypocrite?..:rolleyes:..Dont make false accusations of me just because youve got nothing else to throw at me..I told you that I have no axe to grind with your faith..untill you start pushing it on other people to try to make them feel guilty for wanting to relieve their suffering..That is called manipulation, and theres nothing that urks me more than people who peddle religion like the rest of us are ignorant or living in sin by some other falable persons standards

[Paula]

While I defend your right to not support ESCR, you have no right to ask PAN to stop, because it is their right to do so. You also have a choice whether or not to participate in PAN.

As for insinuating that we are all mentally and emotionally impaired, speak for yourself. You do not have the right to judge anyone's mental abilitiies.

Vicky please highlight the sentence in my response that indicates I am angry at you for your stand on ESCR.

Most symptoms of mental impairment you include are end stage symptoms. And even if they weren't, are you saying that a mental dysfunction disqualifies a person from rationale thought and from leading a productive life?

Think it through; it seems like you are just dumping here.

good night,
paula

[vlhperry]

Dear Paula,

My very first symptom of Parkinson's, before I was ever diagnosed with it, was a clinical depression. Quote from Laura March's paper mentioned prior in this thread, "Furthermore the classic motor signs may not be obvious early in the course of PD and might be mistaken for depressive phenomena. For example, one clinic patient noted that others had commented for nearly 10 years before the onset of obvious PD motor signs." The psychological aspects are a part of the disease from the beginning.

The Advocation for Parkinson's groups, whether self advocates or professional advocates, are aware of the effect of stress on the etiology of their illness. They are also aware of the typical Parkinson personality type: the need to work hard, please others, etc. This is what makes them good candidates for the job of advocation. Because of the compulsive need to be useful and feel they are doing a productive job for society, they put their health in jeopordy by adding advocation into their lives. I have always fought against advocation in my life. But this has resulted in allowing the killing of human lives which I can no longer sit by and let happen.

None of us should be advocating at all. It is too stressful. I don't enjoy arguing with Steve and you, But if I am a Christian, I must advocate against any destruction of human life for medical knowledge.

When did we begin to think of children as things to be constructed for our needs rather than as human lives to be received for their own sake? Children may teach us how we need them but that is not the same as constructing them for our needs.

The new biotechnologies raise old questions about the meaning of children in our lives. Are they ours to make and shape at will? Are children pets, like seeing eye dogs, to be trained to meet our needs? Do they belong to us as possessions? A child is not to be sacrificed for our needs, but we are to sacrifice our own needs for our children. That is the fulfillment of parenting.

These are powerful arguments that need to be answered by those who advocate the destruction or encourage researchers to allow destruction of human life. I've no doubt you and Steve feel attacked by my questions. It is hard to humble yourself and admit you are the one who needs the help of those around you and must depend on their good will. Please consider my posts as they are intended, to question human life in its primitive form and stop attacking me for my religious beliefs. I am only trying to ask you to look at the future affects the result of your advocation will have on the future of the human race. Yes, I am influenced by my religious beliefs as well as my Parkinson's disease.

Sincerely,
Vicky

[Paula]

Vicky,
we need to get something straightened out. You aren't the only Christian here. i have already expressed my concern about ESCR, but that isn't the point here.

The point is you are insulting in your approach. It may be your opinion that people shouldn't advocate, but it's not mine and you shouldn't force it upon others as if it was true. i happen to think advocacy keeps me going and i have very close and supportive friends as a result of it. it's OK to feel the way you do but it's YOUR OPINION.

I completely disagree with your notion that we are not mentally capable of advocacy. it's not even worth going into it's so weak in it's premise. I daresay 3/4 of the world's population has some depression or worse. it's dementia and severe forms of mental dysfunction that impair people from leading productive lives.

you should give yourself and others more credit. A positive approach is much more appealing. Perhaps you have the wrong idea about advocacy.

As far as needing help and guidance, well i certainly do. But I go to the source.

Try a little tenderness....
Paula

[vlhperry]

Dear Paula,

When people advocate, they are pushing their opinion on others. PAN says they talk for ALL persons with Parkinson's Disease. Their main goal is to have Embryonic research approved on the legislative level so they can get federal funding for embryonic stem cell research. How in the world can I advocate the opposite yet be tender?

Anything I say or do to convince them they may be wrong will be taken as an attack. I am told to allow them to continue convincing people with Parkinsons disease to support their effort although it goes against every moral fibre of my being. How can anyone who has had the honor of being a parent support this immoral way of finding a cure?

I have read all the information posted on PAN's web site, I have researched other pro stem cell research websites, I have even attended a PAN advocacy recruitment meeting for people who live in the midwest. I am very aware of the facts that the people of PAN believe and I don't agree with their assumptions or methods of recruiting patients for advocacy. They simplify a very complex issue. Just because the ability to choose to destroy life that exists, does it follow that life should be destroyed?

How do I tenderly state my point without upsetting those who believe PAN?
My question is quite sincere. Do not read any sarcasm. This whole issue has struck me deeply. Being attacked on this forum is stressful, as mentioned by Thelma, but I feel I must speak out and putting the facts as I see them is the only way I know how to challenge others to reconsider their actions.

Sincerely,
Vicky

Vicky

[Paula]

Ok I understand that you are serious. I'm not arguing your feelings about PAN, I'm not arguing your right to oppose ESCR. I'm arguing with you [not attacking, truly - but reacting defensively for sure] about the fact that you basically called us all too crazy to be advocates..lol.

It's like - if you don't want to be "attacked' as you perceive it to be that, don't come out shooting. Try to stick to the issue instead of insulting people. It's not what you are saying it's how.

respectfully,
Paula

[vlhperry]

Paula,

But I truly believe we are not the best persons to advocate how to cure Parkinson's disease because of the Psychological aspects. That is the reason there are always flair ups on this and other Parkinson sights that get into the political issues of the disease. I am not attacking you or anyone. I include myself in that category. I feel forced to advocate for pro life as no one else is bringing the point up. I don't want to have hissy fits with you, Steve or Caroline. I am not a outspoken person. I have no experience in advocating and am only copying what I have seen other advocates post here.

I have found many of PAN advocacy posts on this site offensive in the extreme to my views, but have ignored them and have not complained. Silence is taken to be acceptance. I know of no method of honey coating my message. Those who believe otherwise will find offence where none was meant. Perhaps PAN cannot understand that someone with all the facts can still come up with a different ethical conclusion.

Respectfully,
Vicky

[steve m]

None of us should be advocating at all. It is too stressful.

On the contrary..advocating is one of the things I engage in that makes me feel useful and whole..The other work I do is in AA helping alcoholics and addicts find peace in their lives..if..that is they ask me for help..I dont chase anyone and I dont push recovery on them..I got involved in pd support..and on this forum so that I can stay one step ahead of the cracker factory and maybe help somebody along the way..I'll be damned if Im going to become a couch potatoe and sit in front of the boob tube and feel sorry for myself..Compared to what Ive been through with addiction for 23 years of my life..and the years sober to figure out which way is up..pd is a lot more managable..So everybody is different..what is stressful to you may be a piece of cake to someone else..I do what I can and I let the results go..I put it in God's hands and if I made a wrong choice I will know soon enough as the events unfolds if its God's will or not..I dont go for that fire and brimstone rhetoric, and I dont believe all the answers are in the Bible either..I did at one time, but what Ive been through in my life, and how God came to me is contrary to anything thats written in the Bible..So suffice to say our beliefs are not the same..I have struggled with the stem cell issue too..and theres more that one way to look at the issue..theres the negative approach, and theres the positive approach..The negative approach tellS us..ooooooooo..this is bad..we're going to **** for this..:eek: ..And then theres the positive approach..Couples who cant have children through natural birth now can have the priviledge of the joy of having a family..Whats so terrible about that?..Somebody with a neurological disease can walk again..Maybe someone like us with pd..Maybe someone like Christopher Reeve with a spinal cord injury..I'll tell you what..If I knew how to cure a guy like him, Id be a dirt bag to sit and watch him suffer because somebody might judge that I crossed some kind of a "moral boundary"..and by whos standards?..If Im damned to **** for doing something like that, then give me my ticket and Im on my way!..And by the way..When does the bus leave?

[lindylanka]

And I thought that just belonging to a board like this was in iteslf a form of advocacy!

Of course there is a need for a diversity of opinion, but without a need to hit back at any person for holding THEIR opinion. I had not noticed that PAN was narrow-minded in its approch, it is after all made up of many people. And then again, I am looking in from the outside......

For people like me who are not living in the US where many decisions are taken that affect people on an international level, and who may feel less able to be movers and shakers in the PD arena a lot of this looks so political and so far from where we stand as patients as to be almost on another planet!

The moral and ethical imperatives are the same though, and they are very very difficult matters, and down to our own individual hearts. And to expect someone else to subscribe to a particular stance because that is what 'I' believe in is not only dictatorial, but unrealistic. The issues are complex. There are many people who are fiercely anti-abortion, but who have had one, people who are anti-war, but allow their children to join the military, who are pro-war but who deplore the need for it, there are endless variation for our minds to hang onto. At the end of the day though it is and individual thing.

Forums like this are there to talk, to communicate, to have a certain freedom to be ourselves, and sometimes to argue. But always they are here for everyone, and not just one persons point of view.

I cannot believe that anyone would say the PWP's should not advocate for themselves and others with PD - on the other hand I will ophold their right to say it! On the other hand, to say something like that, and to imply that ALL people with PD present with psychological problems from the beginning of their disease path is clearly a distortion of reality - this is a condition that has so many variables, that even the experts don't agree about where it starts and ends!

There may be new people coming here looking for support, and I do think that is something that should be considered.

Lindy

[vlhperry]

I do not spend my time watching the "boob tube." I knit scarfs, hats and mittens for the homeless. I tend the library at my church. I attend Bible Study every Sunday at my church. I read constantly. I play with musical groups. I enjoy my family. I have also sent the letter the thread we are posting on to all my senators and representatives both state and federal.

I don't know how you came to accept God. I accepted him when I turned to reading the Bible. And I do believe all the answers are in the Bible if you look and study it enough. I do not know whether you will go to heaven or ****. I am not the judge. The Bible leaves that up to Christ. I, too, have suffered worse than Parkinson's disease. You sound very angry with God. Your post speaks out that anger. I never asked Caroline to ask me to call my senator and Representatives to vote yes on the Veteran's bill. I did not respond to her e-mail with hate but with an opposing view. I am sorry you had to sell your boat, I know it made you feel you were still productive while you worked on it. I just don't know what to say to you and your hate.

Vicky

[Paula]

Paula,

But I truly believe we are not the best persons to advocate how to cure Parkinson's disease because of the Psychological aspects. That is the reason there are always flair ups on this and other Parkinson sights that get into the political issues of the disease. I am not attacking you or anyone. I include myself in that category. I feel forced to advocate for pro life as no one else is bringing the point up. I don't want to have hissy fits with you, Steve or Caroline. I am not a outspoken person. I have no experience in advocating and am only copying what I have seen other advocates post here.

I have found many of PAN advocacy posts on this site offensive in the extreme to my views, but have ignored them and have not complained. Silence is taken to be acceptance. I know of no method of honey coating my message. Those who believe otherwise will find offence where none was meant. Perhaps PAN cannot understand that someone with all the facts can still come up with a different ethical conclusion.

Respectfully,
Vicky

You don't have to honey coat anything - it's a very serious and emotional message and I'm sure you have been offended and get angry. It sounds to me like someone at that PAN meeting really got under your skin and that makes one angry of course.

This board is so good about disagreeing.How does one go through life with this serious a condition and this serious of a decision about cures and not debate or vent or whatever you want to call it? If you want to see ugly - read the Huffington Post. This board is great I think.

But I disagree with your thinking. First of all, we shouldn't write ourselves off mentally because we have PD. Secondly, and this may be the most important thing i say out of all my posts in this thread - YOU ARE THE BEST PERSON TO ADVOCATE FOR YOURSELF. DO NOT ASSUME THAT OTHERS HAVE YOUR SENSE OF URGENCY. There are components of treatment development that only the patient can push for - like getting it faster. Most people are out there doing specialized jobs and not putting the whole picture together on a timeline as we MUST do.

Most people get up and go to work one day at a time. Our lives depend on many many aspects of the process coming together IN TIME. I can accept my fate.....but I don't have to go quietly and I definitely do not believe that the medical research or biotech industries are thinking of my best interest.

Love of money - a big bad sin,
Paula

Lindy meant to add - I think just posting here is a form of advocacy too......I'm not just a compulsive poster, I'm a compulsive poster with a purpose.....

[steve m]

I do not spend my time watching the "boob tube." I knit scarfs, hats and mittens for the homeless. I tend the library at my church. I attend Bible Study every Sunday at my church. I read constantly. I play with musical groups. I enjoy my family. I have also sent the letter the thread we are posting on to all my senators and representatives both state and federal.

I don't know how you came to accept God. I accepted him when I turned to reading the Bible. And I do believe all the answers are in the Bible if you look and study it enough. I do not know whether you will go to heaven or ****. I am not the judge. The Bible leaves that up to Christ. I, too, have suffered worse than Parkinson's disease. You sound very angry with God. Your post speaks out that anger. I never asked Caroline to ask me to call my senator and Representatives to vote yes on the Veteran's bill. I did not respond to her e-mail with hate but with an opposing view. I am sorry you had to sell your boat, I know it made you feel you were still productive while you worked on it. I just don't know what to say to you and your hate.

Vicky

Hate?..lol..You need to look at your side of the street..What was your motivation for starting this thread?..You are putting words in my mouth and making inaccurate assumptions..I am not "sorry" that I had to sell my boat..Im relieved!..I dont have any anger toward God..I am on my own spiritual search for the truth, and it is not on the same page as yours..So thats where we differ..Just because we dont agree on that doesnt mean that I am angry..It means that you cant accept that I dont see it your way..so I must be "angry" and I must be greiving the sale of my boat..Wrong!..Wrong!..Wrong!..If I were angry you'd have be pm-ing the moderators by now

[vlhperry]

On the contrary..advocating is one of the things I engage in that makes me feel useful and whole..The other work I do is in AA helping alcoholics and addicts find peace in their lives..if..that is they ask me for help..I dont chase anyone and I dont push recovery on them..I got involved in pd support..and on this forum so that I can stay one step ahead of the cracker factory and maybe help somebody along the way..I'll be damned if Im going to become a couch potatoe and sit in front of the boob tube and feel sorry for myself..Compared to what Ive been through with addiction for 23 years of my life..and the years sober to figure out which way is up..pd is a lot more managable..So everybody is different..what is stressful to you may be a piece of cake to someone else..I do what I can and I let the results go..I put it in God's hands and if I made a wrong choice I will know soon enough as the events unfolds if its God's will or not..I dont go for that fire and brimstone rhetoric, and I dont believe all the answers are in the Bible either..I did at one time, but what Ive been through in my life, and how God came to me is contrary to anything thats written in the Bible..So suffice to say our beliefs are not the same..I have struggled with the stem cell issue too..and theres more that one way to look at the issue..theres the negative approach, and theres the positive approach..The negative approach tellS us..ooooooooo..this is bad..we're going to **** for this..:eek: ..And then theres the positive approach..Couples who cant have children through natural birth now can have the priviledge of the joy of having a family..Whats so terrible about that?..Somebody with a neurological disease can walk again..Maybe someone like us with pd..Maybe someone like Christopher Reeve with a spinal cord injury..I'll tell you what..If I knew how to cure a guy like him, Id be a dirt bag to sit and watch him suffer because somebody might judge that I crossed some kind of a "moral boundary"..and by whos standards?..If Im damned to **** for doing something like that, then give me my ticket and Im on my way!..And by the way..When does the bus leave?

Steve, no Hate? Your way is positive, my way is negative. Fire and Brimstone?

Vicky

[Paula]

You are like a breath of fresh air.... mentally whole. lol

paula

shoot i took too long...lol

[steve m]

Steve, no Hate? Your way is positive, my way is negative. Fire and Brimstone?

Vicky

Vicky..Hate is a big word..Comprendo?..And you shouldnt be using it so loosely..If you have been reading and comprehending my posts since I joined here 2 years ago you should know that I am not filled with hate..Ive gotten that fire and brimstone speech from more than one religious millitant..I had one guy who thinks hes a faith healer ask me if he could pray over me and cure my pd..He told me that disease was of the devil..:rolleyes: ..I told him that I was all stocked up here..Thanks..but no thanks..That kind of fire and brimstone rhetoric is an insult to me personally and to my intelligence as well

Here is an example of negative vs positive:..

A couple decides to have a test tube birth because she cant deliver naturally..One faction says..You cant do that!..Maybe God doesnt want you to have children..That is a sin!..And the other faction says..Good for you!..What a wonderful thing that God in His ultimate wisdom has graced us with this technology so that everyone who cant have children naturally can experience the joy of parenthood..So whos right..and whos wrong?..A gift?..Or a curse?..The same goes for curing disease..A gift?..Or a curse?..Those people who benefited from GDNF..Should we have them suffer?..Or should we applaud their success and look to a new hope for a solution to our common problem?..If there is no advocacy..there is no hope!..If there is no hope, then we wither away into nothingness..If there is no advocacy..then we will probably not have the hope of finding a cure..or another treatment other that ESCR that hasnt been found yet or even thought about in the great minds of medical science to date..We owe that to the next generation of pd patients..Without advocates stirring the pot..Sinamet and DBS surgery is the best its ever going to get..Is that the legacy of our labor that we want to leave behind?..I think not!

[lindylanka]

I love posters with a purpose! And disagreement is great for sorting out ones stance on things......

Something you said, Paula, really resonated with me, especially after working for a while in the disabilities arena on empowerment issues:

'we shouldn't write ourselves off mentally because we have PD'

Isn't this what PD'ers were expected to do? I remember seeing the old PWP's, the real long termers - who took what they were given, never expected or hoped for more - who came out last year in the spring sun in my town. They are a generation of PWP's who did not have a voice, never had a chance, who are often treated as though they are senile, or deaf, sometimes as though they are drunk, and because there is little awareness of PD here ARE written off, socially, economically, medically, and, when they have little or no family or friends, personally. My grandmother had PD, in a place and time when treatment was not good, and where PD was in some way regarded as shameful to families, and not talked about, sometimes actively hidden.

Puts it in perspective when it is only in the last year or two that things have started to get a little better in hospitals with regard to self management of medication - that is a direct result of patient advocacy. At all levels people with PD are making a difference through advocacy. And broadening the definition of PD.........

The more vocal the better - :D

To be more on topic ESCR is only a part of a much wider research picture, which is likely to find ways around this ethical hot potato that will have wider acceptance and fewer problems. Am I right in thinking that more and more stem cell research does not use embryonic cells?

Sad that it still looks as though it will be rather a while before a marketable 'cure' emerges........

Lindy

[vlhperry]

Lady Linka and Paula,

I agree in educating myself and those around me about my illness. I have also confronted neurologists who tried to tell me I did not have Parkinson's but had Delayed Stress Syndrome because I was severly abused as a young child. I went to New York at MT. Zion and had a Floradopa PET scan which was interpreted as moderatly severe Parkinsons. I also sent a blood speciman to Allinia Diagnostics who checked for genetic abnormalities of my Parkin 2 gene and they discovered 2.

I fought to get DBS surgery because I had read research that said people with mutations were received a great deal of relief of their symptoms. My neurologists said she did not believe she could recommend it because I reminded her of another patient she allowed to have the surgery because he committed suicide. I told her she was being unfair. I had only been her patient a few months and she did not know me well enough to jump to that conclusion. I told her she needed to consider me as a person and not slot me in a category with some other patients. I explained my religious faith was strong and I considered suicide a sin. I convinced her I had strong help at home to help me heal. She finally said yes and after a year of having bilateral DBS surgery, I am doing very well.

Parkinson's is a blanket diagnosis for several unknown illnessess not yet understood that happen to share similiar symptoms. Until more is learned about how the brain works, any other treatments are little more than hopeful guesswork, as is DBS, that might help some, but not all, PD patients since every case is so different.

I speak out loud and clear for my rights as a patient because I understand better than anyone else what I deal with on a day to day basis. PAN cannot speak out for me as they do not know all the different diseases called idiopathic Parkinsonism.

Steve,

You have preconceived ideas of what type of person I am simply because I call myself religious. You have slotted me in the "fire and brimstone" and I have never pressed my religion on you or anyone else on this site. The Holy Spirit is the only way a person can understand God's plan. It is not my job to judge, evangelize, or attempt to convert anyone as that in itself would be sinful. If I find joy in my beliefs then I will continue to study and learn more about them. I too had a neighbor come over and tell me my posture was stooped because I would not lay my troubles down before the Lord. Another neighbor told me it was her christian duty to warn me about my new neighbors and proceeded to gossip about each and every one of them. I also let a neighbor pray over me because she was concerned about my illness. I let her do so not because I believed she was capable of curing me, but because it gave her some feeling of contentment that she had done something to help another individual.

I feel children are conceived as a part of a family to fulfill God's command to go and populate the earth. The responsibility of taking care of a child is the parents' responsibility. Not every woman or man was meant to conceive children. There are other ways for them to lead productive lives or to have a job which will enable them to have an impact on children's lives such as a teacher, a pediatrician, an aunt or an uncle. Children are not conceived for the parent's wants and needs but for the parents to learn to meet the wants and needs of the children. God did not give us the knowledge of right and wrong. Eve and Adam stole that knowledge from him when they allowed the serpent to convince them they were capable of having God's knowledge.

We are left to determine what the correct ethical answer is to what technology should be used and what shouldn't. Scientists are naturally curious as to how everything works. The question that arises is although they are able to create babies in test tubes, should that mean they should do it? Look at the repercussions we have now because they permitted themselves to open the box of worms. Now they can go another step further and assume the power of who lives and who dies. You choose to give them that right not based on ethics but based on your need to cure your illness. If God commands us to respect all life and to safegaurd and love those weaker than ourselves as we would love ourselves and you choose to cure your illness, there is still the definite possibility that Christ will forgive you if you ask for his forgiveness and you spend the rest of your life living up to Christ's one commandment, Love thy God and thy neighbor as thyself.

I don't slot happenings in my life as a negative or a positive as you seem to. If I am handed lemons, I make lemonade. My glass is half full not half empty.
If you have looked at my past posts over the past 16 years you will find I offer as much advice and help as I can to others and offer encouragement to those who are at a low point. I have even exchanged light pleasantries with you in the past. I do not want to die, but I know it is inevitable. I do not enjoy knowing the suffering going on this earth, but do not label it good or bad. It is part of life.

Vicky

[olsen]

sounds as if you were definitely "advocating" for yourself in obtaining the DBS surgery you wished to have--you educated yourself about the therapy, thought it would definitely benefit you, and when you were told otherwise, decided to "fight" for your right to have this therapy. So it's okay for you to advocate for what you think you need, but not for anyone else??? and what about the depressive/cognitive problems of PD__did your doctor question your ability to determine what was best for youself since you have PD and those cognitive or depressive problems you seem to think everyone with PD has? The post I deleted noted that as a spouse I advocate for this disease--am I exempt from the ban of advocating because I do not suffer from the cognitive /depressive aberrations you think those with PD have?Your arguments are incongruent..I have always admired your spunk, and it is your determination and ability to advocate for yourself that has enabled you to receive the DBS you rightly determined would help you. allow others to do the same without making remarks about their cognitive functions. madelyn

[vlhperry]

Dear Madelyn,

I can advocate for myself because I am the only one who understands how I feel and how meds affect me. As I said in my previous post, my neurologist did not want to allow me to have DBS surgery because she was afraid I was as depressed as another patient she had. She questioned my ability to decide what was best for myself. I would not assume to know what is best for Paula, Caroline, Steve, Charlie, Proud Mama, or anyone else with Parkinson's as I do not understand the symptoms they are experiencing and what would help them improve. Stem cell therapy may help a very limited amount of people. Gene therapy may help myself. DBS was good for me but could cause another to lose the cognitive skills they have.

I have no problem with sharing ideas with others with Parkinson's but I am not in a position to dictate to them how to best deal with their illness. I believe in self-advocation on an individual basis until the etiology of each case of Parkinson's disease is understood.

What you choose to do with your time is your own peragative. I am pleased to hear you are a wonderful caretaker for your husband. I realize you are angry with my idea because you both deal with the effects of the disease. I have no problem with others "self-advocating" for themselves. But as a group we can't simply because there is no certain "treatment" that will help all persons with Parkinson's. Even some diagnosed with Parkinsonism are not helped by levodopa. We need to advocate for more patient oriented therapy and technology to increase the knowledge of Parkinson's before we can advocate as a group as PAN suggests, not lobbying our Senators and Representatives to support specific therapies that may or may not help the majority of the Parkinson's sufferers.

Respectfully,
Vicky

[Paula]

Vicky I can understand and even agree [how about that? lol] with your feelings about PAN and stem cell research. If one is opposed to ESCR, PAN would not be the organization for you.

PAN started out with Joan Samuelson [a patient] and Anne Udall [father a senator who passed away with Parkinson's]. Their first mission was to get more funding for research. It has evolved from there.

I don't know if there is a PD organization that does not support ESCR research; someone would need to start one. Just as you claim that they don't speak for you, you don't have the right to take away the hope of others' either.

So setting stem cells aside, I also agree that different treatments are needed for different folks. Without explaining it any further again, that is one of the reasons I fought so hard about GDNF. It definitely worked for many of the participants. This was after consultation with pre-clinical, and Phase I and II researchers directly working on it and the actual trial participants.

What I'm trying to say I guess, is that advocacy involves doing your homework, and making choices. I have personally met with trial participants, even the opposing researchers who supported Amgen's halt. I'm convinced from the evidence.

We are not emotionally disturbed people trying to dictate what is good for all. What I am trying to convey here on the forums, is that you are the only one who will pay the closest attention to the strategic plan for your life. Bio tech and organizations are not patients and are run as businesses.

You cant make the decisions you need to make without education. I've seen these forums develop into wonderful sources of information and connections.

There will never be consensus on ESCR. Personally, I don't think it's a decision I'm ever going to have to make. But if we do, we shouldn't make it blindly at someone else's recommendation. You mar your Christian testimony when you judge others. Steve's boat, for example, has nothingto do with this conversation and was a complete assumption on your part. You are labeling his argument as hate.....these are judgement calls. Let that go and just defend your issues. If you know the Bible, you know it's not your job to judge anyone.

paula

[vlhperry]

Paula,

My mention of Steves boat was not a judgement. It was an attempt to reach out to him on a personal level. We had discussed boats and swapped stories about boats. His posts have been sarcastic and demeaning. His suggestion that his outlook was positive and mine was negatibe was a judgement call on his part. His calling me another "Fire and Brimstone" type was also a judgement call on his part. It left me confused and hurt.

Neither he nor I have asked you to remark on our posts to each other. That is a judgement call on your part. And if you read my previous posts you should have known I know I have no authority or right to judge others.

You have no idea who I am or the right to judge, as you have in your previous posts, my motives. I never addressed the first post to you or Steve. And I never in any of my posts resorted to belittling or what you and Steve interpreted to be judgement. I offered a letter to post on PAN that was an alternative for other people with Parkinson's to send to their politicians. Although the letter contained no reference to religious reasons and every statement showed the source for my facts, both you and Steve jumped on me, accusing me of trying to cause problems. If this forum doesn't want advocation or different views then all advocacy postings should stop. When you post, you claim to only be dessiminating information. I was giving information that supported ending ESCR. I believe I am supposed to have the same rights as all others on this site, not just the ones who agree with me. You and Steve may not agree with me, but the judgements and assumptions you have made about my motives for posting are both unfair, unkind, and meant to hurt. Definitely your posts lack tenderness which I believe you told me to try. I did when addressing Steve about his boat and was rebuffed as he and you considered my offer of emphathy as a judgement call.

Vicky

[Paula]

OK I give up.....didn't mean to hurt you. I made a decision years ago to attempt to focus on positive things people say and let the negative roll. And that's what I am going to do now.

Good luck,
Paula

[CarolynS]

Vicky, I hope you...and everyone above...will read this through before hitting the reply button.

Anyone...Correct my if any of this is incorrect or misguided!

Your quote...
"I have read all the information posted on PAN's web site, I have researched other pro stem cell research websites, I have even attended a PAN advocacy recruitment meeting for people who live in the midwest. I am very aware of the facts that the people of PAN believe and I don't agree with their assumptions or methods of recruiting patients for advocacy. They simplify a very complex issue. Just because the ability to choose to destroy life that exists, does it follow that life should be destroyed?"

PAN has every right to take a stand in the direction they feel is appropriate as an organization. Just as you and each person replying and reading this thread has that same right.

As a person of the human race (not just a PWP), I have every right to choose what I support and don't support. If I don't support the view, then I can turn away and go in my own direction.

If you feel this strongly about ESCR then you should not try to change ones mind (PAN or any individual), but find the right place on the "other side of the fence" and take a stand there.

I am going to admit that I didn't read every single word in the thread, but personally...I see the bottom line as:
There will never be a consensus on ESCR or the use of stem cell in any venue. Just as there will never be a consensus on abortion.
There will never be a consensus on when life begins; e.g. a 50-cell blastocyst (ESC) life.
Decades have gone by while embryos have been dumped/flushed...DESTROYED...down a sink drain in a fertility clinic around the world by the parents that saved them through freezing to begin with, while humanity never raised a stink about that process.
Decades have gone by while selective pregnancy reduction around the world has DESTROYED embyos so that mom and dad wouldn't have multiple births, typically caused by fertility treatment, while humanity never raised a stink about that process.
The human race...not as a whole, of course...allows abortion to happen.

I beg the question...Since the issue of ESCR raised the issue of destruction, why has there not begun a movement to stop what happens in the third and fourth bullets, while we are also arguing over the 50-cell blastocyst.

Hypocritical...is to take a stand against ESCR and not take a stand against the destructive process of the clinical fertility process

There are so many commentaries on the issue as a whole, that one could never read them all. All side, and all in between, having stated their case.

Just search-engine "pro escr" or "against escr". Not only will you find information, but also groups that you can become involved with that have you beliefs.

[steve m]

Vicky..When you suggest that we arent capable of advocating because we arent mentally fit..that is a insult..Im sorry that you are confused and hurt..I dont get anything good out of argueing with anybody especially in this community..That is not what Im here for..However I can only let so many personal attacks on advocacy slide by without putting my 2 cents in..Advocacy is something I do to help others as well as myself, and it takes alot of my time, and I dont get paid for it, and I dont want to get paid for it..Advocacy is not going to go away, so you can do all the advocating against it you want..You can kick, scream, and carry a picket sign if you choose..But it will be to no avail..Not everybody is going to go the route you have chosen..That is your journey and theres nothing wrong with that at all..Just let it go and let everyone else walk their own path..Because ultimately that exactly what they are going to do anyway

Peace, Steve

[vlhperry]

Dear Carolyn,

"The Parkinson's Action Network (PAN) is the unified voice of the Parkinson’s community—advocating for more than one million Americans and their families."

I believe I qualify to be included in the mission statement being more sure I have Parkinson's than most; however, they do not represent me. We are not unified and I resent them representing me when I do not agree with their Mission statement, above, which was copied directly off the PAN web site.

Sincerely,
Vicky

[vlhperry]

Thank you for at least trying to see my view Paula and Steve. I agree to disagree.

Vicky

[Howardh]

Atheist point of view in a sentence-- where it is known in some quarters that existence simply exists for what is the alternative existence does not exist?-- there is never a dull moment when the different views on Embryonic SCR hit the sound bites.:D

V has strong religious views on the use of Embryos for valued research and 60 percent of Americans do not agree with that view. ESCR will continue to gather momentum with high ethical reasoning at its foundation.

Pan is doing a great job and has the support of the wider community. These people are quiet heroes who just get on with the job even when facing adversity. And responsible science will advance as it should because of it.:)

GO HARD SCIENCE