Weekly Check-In Nov 12-18, 2006 Welcome New Community Members

[steve m]

Hi Everyone..Welcome new community members!..We are glad you found us..Please continue to join us..We're all in the same boat

I got out and voted on Tuesday..thank God there wasnt any lines..It took longer to shoot the breeze with old friends and family members that I ran into over there than it did to vote..Per the election results it looks like change is on the horizon, and I hope some of that change will benefit our cause for a cure..Things are pretty much status quo here in Rhode Island except for Lincoln Chaffee losing his bid for re-election..I felt bad about that because he was always his own man and Ive always respected him for that..plus he always supported whatever PAN was advocating..So I sent him an e-mail and thanked him for supporting us parkies, and wished him well in the future

We went to probate court on Thursday to get the ball rolling on my mother's estate, which is good..But the probate judge is also the lawyer who drew up my mothers will started asking my lawyer a bunch of stupid questions and I felt like asking him what his problem was because after all he drafted the will?..:confused: ..Welcome to Mayberry!.. :rolleyes: :D ..My brother signed some papers in my lawyers office and said he understood what he was signing and later when the judge asked him he said that he didnt understand, and some of the paperwork was to appoint me as his guardian because hes retarded and doesnt understand even when he says he does..So the judge gave my lawyer a bunch of crap about that..I think the judge needs a guardian..:rolleyes: ..Anyway we finally got that straightened out..That judge never was a very good lawyer, but he worked cheap which is why my parents hired him..You get what you pay for

I finally sold my boat!..A guy from Cape Cod came down this afternoon and looked at it, and like it so he gave me a substantial deposit, and didnt even negotiate the asking price, so he said he will contact me during the week to get the paper work done..Let me tell you folks..That is a load off of my mind!..And even better..I have no regrets about moving on

That about sums it up for me..How was your week?

Steve

[K Hamilton]

Random thoughts about Steve's post:

A boat floats, and a millstone doesn't, so I am glad you no longer have that particular floating millstone tied around your neck. (I hope everyone knows that expression, otherwise the last sentence is pretty weird.) (I guess it is weird, anyway)

I know you've had a long time to get used to the idea of that part of your life being gone, but I am sure it still hurts to see that last connection cut.

You've got a good heart for taking such care of your brother. Is he younger or older than you? Somehow it seems to me like it would be much harder to take care of an older sibling; it would just feel like the roles were mixed up.

I've had an interesting month or so. My meds are still keeping me in pretty good shape, but there are a lot of deficits that the meds just don't deal with - losses in cognitive skills, balance, autonomic functions, tiredness. For the past thirty years I have been running an engineering office (structural); the last seventeen have been as a partner in a firm with a main office in NY.

I finally had to admit that I just wasn't going to be able to run things for much longer, even though I'm not ready to retire. The people that I had trained to take over and to whom I had already delegated a lot of the management, left earlier this year, one at a time, to each go their separate ways and work by themselves. I had to take all of the load back on me, and it has not been fun. So in our annual partners meeting a few weeks ago I announced that by this time next year, somebody else was going to have to run the show out here - and they needed to help figure out who. I'll be able to keep working, I think, but not with the level of stress I carry. (Did you know that professional liability insurance premiums for structural engineers are among the highest of any profession? No, you probably didn't know - or care :D Anyway, that is indicative of my level of stress)

Since this profession is what I have been headed towards since I was a child, giving it up is not going to be fun. I have to redefine my life and myself. Before this came along, my wife and I envisioned retirement as buying some sort of small motor home or large traveling van, and going around working with one of the groups of retirees that fix up or build community centers and clinics in poor areas. That doesn't seem as likely now.

Change, change - and I don't know what the schedule is. That is the frustrating part. I feel great right now - but I don't know how much they are supporting me, or what I would be like without them. I do know that I was a sorry sob before I started them, and I am sure things haven't improved any.

I did add a bit of Sinamet into my diet a few weeks ago - the Mirapex was causing me to keep falling asleep in mid-sentence, so my neuro offered the choice of something new, expensive, and not covered by insurance because it was so new, or else Sinamet ER. I decided to go with the Sinamet (25/100, 2 x per day), both because it was a lot cheaper, and because it sounded like it would work better. And it does help a lot with alertness. I am probably moving the day of diskinesia a bit forward though.

ANyway, that is the news from Lake Wobegon, where the sole inhabitant is strong, handsome, incredibly above average, and shaky and worried. Thanks for the friendly ears, folks. I feel better already.

[mamafigure]

Greg, sounds like you live in a place simialr to where I live (demographically, not geographically). So glad that someone gave you a fair price for your boat. I had a feeling last week that this would be the week.

My youngest has cognitive issues as well as vision and hearing, so I understand what you are saying. She is almost 20, and is grown up in some ways, but not in so many more.

Kay, you make me laugh about your closing (Lake Woebegon). You have a large heart, and I so enjoy your posts.

An update on my situation...surgery on Tuesday. I met with the anesthesiologist and someone had written that I take Reglan two times a day, so I think that she was planning on using it...and I am deathly allergic to it. Someone had thought that Reglan and omeprazole were the same thing!!
Anyway, she was the anesthesiologist for my daughter recently, and I trust her. She is going to work with me, but cannot guarantee that Kevin can be with me when I am put to sleep. I will probably be wide awake since I will not takethe mind eraser and don't plan on an iv until going to or.

Oh, she asked me what I was going to use for pain (allergic to most) and so far we have come up with ibuprofen and tylenol straight. Since I have an hour's ride up into the hills on a dirt road, she wasn't thrilled. She was upset that no one had tried any pain meds on me to see if anything would work.

So, it's off to surgery on the tenth anniversary of my son's death to surgery that could end up being most anything.

Take care, everyone,
mama

[judytiger]

Mama Figure - how far down in the hollers are you?

Tiger and I voted last week (absentee) so that I could travel to our "little farm in the mountains" (south of Blacksburg) to winterize the house. Draining the pipes and holding tank was my biggie - couldn't even get out to roam the place because I was waiting for a repairman to appear.

Tiger's new addition of Parcopa to the middle of the night, with Sinemet being taken throughout the day, seems to be increasing his stability - this is good!

Had hoped to be able to save a shade tree in the front yard - unfortunately the tree service said that "No Save" and it will be taken out next week - Whimper! I am a tree hugger and this really bothers me but if the alternative is to have a 50+ foot tree fall on the house, I lose.

Hope all have a great week.

Soon,
Judy

[mamafigure]

I live in the mountains outside Bristol. You were only 1 1/2 to 2 hrs away.

I'm glad that Tiger is doing a bit better on his new meds. That's something to be thankful for.

I hate cutting down trees, too. They always give you that argument - or the one about tree roots in the septic system. Y'know what? My feelings (Chances are the tree will not fall. If it does, a branch will come down, and even then, it probably won't hit the house, and if it does, that's what home owner's insurance is for). I'm not giving you advice, Judy, I'm just voicing this to all the folks who have told me, "No trees."

Take care.
mama

[vlhperry]

Mama you keep your thoughts positive. I don't know what your surgery is for but will keep you in my prayers. Judy, I love big trees to, though I do not hug them. But I enjoy the shade they bring and the sound of the wind blowing through the leaves and limbs. I live in a new condo development so there are no big trees yet. But they are growing.

It is cold here in Minnesota. Steve, I wish I could have the faith you have in "PAN" but after attending my first advocacy meeting in the Midwest in Milwaukee WI. I must say, I was bitterly dissapointed. I do not believe embryonic tissue is the for sure cure they claim it is for Parkinson's disease. I have heard the movement disorder director of the Mayo Clinic, in Rochester claim they will never be able to make the cells sophisticated enough to help Parkinson patients. I tried to ask questions at the conference and the Dr. who was answering them, the main speaker, was unable to explain why he could not accept that genetics could play in a cure. (Paula, how about GDNF?) for Parkinson's disease. I feel like we (the parkinson community) have been used by PAN using the morality of the stem cell debate to get the words "Parkinson's Disease" in the headlines based on a lie. Stem Cells can no more cure Parkinson's than a bar of soap. It is time to give the reputable dotors and reachers on the talk show circuit talking about issues that really matter to Parkinson patients. Such as training hospital staff about the needs of Parkinson patients, speech therapy, physical therapy, occupational therapy, secondary effects of Parkinson's disease and that Parkinson's disease is different for every patient who has it.

PAN made it very clear that right now they have only one primary goal. To tap into the Veterans Association Federal funds. These funds are used to research the affect of the poisons of biological warfare has had on our soldiers who fought willingly for their country. Are you willing to steal from their pot which they earned by trusting their government to take care of them after the effects of warfare? The government is working hard to find out what biological weapons exist and their effect on our soldiers. Do all those yellow ribbons that say "We Support our Troops" mean nothing? They fought for our freedom. We accidentally got Parkinson's disease. Just because it isn't fair that we have this disease, does that give us the right to rob from funds established to help the soldiers who were injured by friendly fire by our own biological weapons? Soldiers who voluntered to go overseas to protect our freedoms? Most illnesses are cured anyway because of the work of researchers on a completely different illness. Why can't the military neurologist be respected on the same level as the research neurologist in the private sector?

I asked the blondie (what my husband calls her) in charge of the conference if she felt that all people who die should have their organs crossmatched with the list of donors waiting for organs and take what they needed from the dead, whether the family of person's asked it not be done or their faith forbid the practice, and she thought it was a brilliant idea. I was being sarcastic. Have we sunk so low as to not value of anything to be of a sacred nature?

Once more, Embryonic stem cell is a medical issue proven by many researchers not to work, not a political issue except for the people of PAN who use it as an easy way to get Parkinson's disease press, no matter what the cost! Now they are after the Veteran's funding. As Blondie said "It is the federal government that has the millions set aside for research."

Sincerely,
Vicky:eek:

[judytiger]

Mama - I know Bristol; husband's family was originally from Nickelsville/Gate City areas. Beautiful country and so easy to love!!

You are probably correct about the tree but it does have a rotten heart and up here, plumbers are more apt to say - the roots are going right through your sewer line. My response to that plumber was something to the effect of "so move the sewer line out of the roots' way"

My revenge has been to let the farm go back to forest and the wildlife have really moved back in.

[steve m]

Vicky..I didnt post what I posted about Senator Chaffee to spark a debate..I understand how you feel about stem cell research and I respect that..There however are others who do not share your views, and they are entitled to their beliefs and hopes as well

I got involved in PAN to help those who are suffering from this disease who want some relief..even if the person who benefits doesnt happen to be me

[vlhperry]

Hi Steve,

Just talking about my experiences this week. I believe that is allowed? I don't believe I ever once mentioned the elections.

Sincerely,
Vicky

[Paula]

Hi Vicky,

I think I posted somewhere here that I didn't think there would ever be consensus about stem cells. But I actually do agree with you some. Where we differ, is that I think people should have the choice because it's allowed in fertility clinics. I have a hard time understanding the reasoning behind creating life to destroy it for people who want to be parents and not use the rest for people who want to be well. If you accept one, you can't deny the other. But I don't ever expect to use them. So I am going to approach it from your view.

- someone recently told me that the brain is like a tree. It has root system, large branches, smaller branches, feeding process, growing etc. In the Christian BIble, there is the tree of knowledge. [good and evil] I started wondering, as all people do about certain philosophies or faiths, if there could be a connection between these 'trees'. After all, it makes a little more sense than Adam and Eve. Just speculating of course....no answers.

But Amgen's GDNF is synthetic. It has animal cells I think - and what about that? Putting animal cells in your head? Well, again, the Christian Bible says man has dominion over everything else on the earth. Animals have many uses.

And so, once again, I conclude, that one of the best and most long tested treatments is sitting on a shelf, because we are too small of a market. Ethically it's clean IMHO.

If stem cells are naturally provided for us to be able to heal ourselves, they will work. If they aren't, they won't.

PAN gave us a good deal of support with GDNF behind the scenes, allowed a petition to be signed at a coordinators meeting after the forum, wrote letters in support of the trial participants. But they remained quiet during the legal litigation. The orgs were all reserved, with PDF and PAN helping the most. Fox Foundation also eventually helped - they all funded expenses to meetings with researchers and some of their staff.

We've always thought that PAN was too limited in its issues. But it's a great way to learn about the ways of our crafty politicians and to make friends in the PD community. And it does get us funding which is very important. They aren't taking from the vets. To my knowledge they are trying to start new funding for veterans medical centers and every year they lobby to refund the NETRP program, which conducts some of the very best research.

two cents
Paula

[vlhperry]

Dear Paula,

Pan does support embryonic stem cell tissue research as does Michael J. Fox.
But this is still not a grey matter as many try to make it. When the Government made creating embryo's in test tubes, it was a civil authority which takes precidence over religion. I had not been diagnosed with Parkinson's at that time, and I also was not a Christion. I did disagree with Roe versus Wade, I do not beleive or have ever believed the doctors should be allowed to make test tube babies. While I am sorry not every couple can have their own children, They should not take the decision of God away from him by forcing the doctor's to give them what they want. God may have had a calling in mind for the parents that deferred or replaced the wealth of bearing their own children.The bible tells us in Luke 16, The Parable of the Unjust Steward.

"There was a certain rich man who had a steward, and an accusation was brought to him that this man was wasting his goods. So he called him and said to him, "What is this I hear about you? Give an accout of your stewardship, for you can no longer be steward."
Then the steward said within himself, "What shall I do? For the master is taking the stewardship from me. I cannot dig; I am ashamed to beg. I have resolved what to do when I am put out of the stewardship, they may receive me into their houses.
So he called every one of his master's debtors to him aand said to the first, "How much do you owe my master? And he said "A hundred meaaaasures of oil." So he said to him "Take your bill, and write eighty. So the master commended the unjust steward because he had dealt shrewdly. For the sons of this world are more shrewed in their generation than "the sons of light."
"And I say to you, make friends for yourselves by unrighteous mammon that when "you fall, they may receive you into an everlasting home. He who is faithful in what is least is faithful also in much; and he who is unjust in what is least is unnjust also in much. Therefore if you have not been faithful in the unrighteous mammon, who will commit to your trust the true riches? And if you have not been faithful in what is another man's, who will give you what is your own?"
"No servant can serve two masters; for either he will hate the one and love the other or else he will loyal to the one and despise the other. You cannot serve God and Mammon."

PAN is serving money. They are attempting to steal what is our government's duty of researching a cure for our soldiers who were attacked by friendly fire by our own biological weapons. PAN is fighting to be sure the Veterans hospitals continue to receive what they rightly should in order to attempt to rectify their harm to our soldiers. Then, after the presidential election, when they advocate for a candidate who promises them a piece of the Veterans' research funds (I was at the Midwest PAN convention. I saw blondie go "wink, wink" and say that was where the millions of dollors were.)
Not only that, they are argueing as the false steward, based on a lie.

Evidence:

Article from Publication of the Life Legal Defense Foundation.
"The Politics of Stem Cells; The Good News You Never Hear" by Wesley J. Smith.

Contact Aurora Sinai Medical Center
Vicki Conte, Program Coordinator
Wisconsin Parkinson Association
Chapter Affilliate of the National Parkinson Foundation
945 N 12th Street, Suite 4602
Milwaukee, WI 53233
She will send you, at no cost, a DVD made be a Neurologist from the Aurora Sinai Medical Center explaining exactly why Embryonic Research will not work for Parkinson's.
Dr. Eric Ahlskog of the Mayo Clinic in Rochester does not believe in the validity of Embryonic Research

None of the paid PAN advocates not Michael J. Fox, who has done so much be bringing the symptoms of Parkinson's to the general public, but also has made the worse decision in his advocation to make this a political issue instead of a medical issue. I believe in Christianity, but I also believe science and Christianity are compatible. I do not consider this a moral issue but a medical issue. And I have done my homework. Despite PAN 's attempt to present a united front, I saw for myself that it is anything but. I made friends in the workshop who also see advocacy from my view. Which is for the patient to let the medical community make the medical decisions as to what is or is not the best avenues of research for Parkinson's. I realize that there are still some researchers who believe stem cells is the way to go. Their numbers are fading as the facts uncovered from Genetic research is uncovered.

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.

Sincerely,
Vicky

[steve m]

So basically what you're telling us is that us PAN Coordinators are sinners?

[vlhperry]

The Blondie stated with a wink, "That's where the millions are!" The woman was not even ashamed enough to cover her greed. We are all sinnners in the eye's of God. I am only hoping to stop people from sinning by being led by someone pushing a false agenda to get more money. What makes better reading, the truth, or controversy? She is not advocating for research to help those with Parkinson's, she is advocating for embryonic research to get more money for Parkinson's through false lies and to turn Parkinson's Disease into a political debate. People love to read controversy. Reading the actual plight of a Parkinson patient is too heavy. How much reading about Chronic Illness did you do before you were diagnosed and did it stir you to compassion? I gave to United Way through work. I figured that covered it all. I got those volunteers off of my phone as quick as I could by a white lie, I was busy, bad time to talk, etc.

I have an opinion against it, but I do not believe I should have a say about how research funds should be spent. I am not a medical professional any more than Michael J. Fox, who has done some homework, but maybe should reconsider and do more reading of the medical opposition's opinion. As much as I appreciate his strength of character to not hide his illness, I think it against God's law to advocate for your own well being. I will freely advocate for those with Parkinson's so the truth of what is being done will get out there and hopefully they will be moved to educate themselves and decide not or to support PAN understanding their motives better.

Parkinson's Disease is not about stem cells and stealing money from the government. It is about patient's in pain who need the medical help from the medical community, who have the training and have paid for several years of college to be in a place to care for those who suffer because of their calling.

People on this site have asked why so many advocation groups. Why not have everyone get behind NINDS and hand over whatever advocation funds they have raised and give it to them with no strings attached?

Sincerely,
Vicky

P.S. If you wish to continue debating this issue, perhaps it would be better to do so in private. Otherwise you might risk a few people checking out the facts of embryonic stem cell research.:rolleyes:

[Paula]

That would be a good thing for them to check it out Vicky. You want people to know the facts and come to their own decision. Ignorance is dangerous.

One thing I don't understand tho, is where you get the idea that PAN is stealing from the govt. They are stem cell centered, that is true. But they don't fund research. They are legislative driven. Their focus is to direct funds to Parkinson's. They aren't thieves and it would be libel to say they are.

Otherwise, I've always thought civil debate to be helpful if no one is insulting.

paula

[steve m]

The Blondie stated with a wink, "That's where the millions are!" The woman was not even ashamed enough to cover her greed. We are all sinnners in the eye's of God. I am only hoping to stop people from sinning by being led by someone pushing a false agenda to get more money. What makes better reading, the truth, or controversy? She is not advocating for research to help those with Parkinson's, she is advocating for embryonic research to get more money for Parkinson's through false lies and to turn Parkinson's Disease into a political debate. People love to read controversy. Reading the actual plight of a Parkinson patient is too heavy. How much reading about Chronic Illness did you do before you were diagnosed and did it stir you to compassion? I gave to United Way through work. I figured that covered it all. I got those volunteers off of my phone as quick as I could by a white lie, I was busy, bad time to talk, etc.

I have an opinion against it, but I do not believe I should have a say about how research funds should be spent. I am not a medical professional any more than Michael J. Fox, who has done some homework, but maybe should reconsider and do more reading of the medical opposition's opinion. As much as I appreciate his strength of character to not hide his illness, I think it against God's law to advocate for your own well being. I will freely advocate for those with Parkinson's so the truth of what is being done will get out there and hopefully they will be moved to educate themselves and decide not or to support PAN understanding their motives better.

Parkinson's Disease is not about stem cells and stealing money from the government. It is about patient's in pain who need the medical help from the medical community, who have the training and have paid for several years of college to be in a place to care for those who suffer because of their calling.

People on this site have asked why so many advocation groups. Why not have everyone get behind NINDS and hand over whatever advocation funds they have raised and give it to them with no strings attached?

Sincerely,
Vicky

P.S. If you wish to continue debating this issue, perhaps it would be better to do so in private. Otherwise you might risk a few people checking out the facts of embryonic stem cell research.:rolleyes:


I have no objection to people knowing the truth about stem cell research..If there was anything amiss with it I wouldnt be involved in advocating it, that I will guarantee you!

I decided to edit out what I originally posted because I realized that I am not going to make you see it my way..and vice-versa

[K Hamilton]

"A soft answer turneth away wrath."

The stem cell debate is a hard one, and a decision among friends to agree to disagree is sometimes the only way to remain as friends. So, I shall pedal my thoughts as softly as I can.

Like a court trial, there are well-qualified experts on both sides of the medical question of stem cell research, as well as well-qualified theologians, both conservative and liberal, with different understandings of what the Bible says about the question of "what is life."

I know next-to-nothing about the science of stem cells, compared to any of the researchers in the field and to several of the participants in this forum. To that extent, Vicky is correct, I shouldn't try to tell the researchers in medicine and biology what to do or what to study.

However, I feel that what we are dealing with here is more of a political issue than a medical one; even setting the stem cell question aside, medical research is always fraught with politics, whether privately or publicly funded. Depending on which researcher's star is in the ascendancy that year, a given project may or may not get funding, and the decision can be based on personalities and sales ability (and in the case of Congress, pork-barreling) as much as medical science. This is where advocacy should come into play - to try to keep on-going lines of reearch funded when it looks like a potentially viable research line is about to be axed. .........

I do think it is too early to say that stem cell therapies can never work; by its nature, research doesn't (or shouldn't, anyway) know where it is going or what is possible until it gets there. Only in mathematics can one absolutely, for now and forever, prove that something mathematical is not possible, and that is only because mathematics is not subject to physics, reality, or any other of the hard truths that we mortals face every day.

I view myself as biblically conservative and politically liberal, in the common meanings of those increasingly inaccurate terms. For instance, when the commandment says "Thou shalt not kill", I understand that in the original Hebrew the word used was "murder", not "kill". Murder is a subset of kill, but kill is not identical with murder. It is this distinction that has made it possilble for Christians to be soldiers or police officers. In other words, when reading the bible, I believe that everything it says is true - but only when translated in the context of the language, idiom, social mores, and customs of the day - what the written words were meant to convey to the reader or listener of the day.

Sorry to ramble so much - when I started writing this post, I knew where it was going and how i was going to deftly wrap it all together into one compelling arguement about stem cells - something that I now cannot recall, or even tell you which side of the debate it was on. Probably just as well.

Goodnight to youse all!

[rosebud]

this thread reminds me of an old saying...the more things change, the more they stay the same...:D

will post more next week...that would be starting tomorrow right?