Parkinson’s Clinic of the Ozarks named to “gold standard” in Parkinson’s care

© 2007, Springfield News-Leader
http://www.news-leader.com/apps/pbcs...0723034/-1/RSS

The Parkinson’s Clinic of the Ozarks, a Springfield center that provides specialty care to patients with Parkinson’s disease, continues to be among the best-such clinics in the nation, according to a news release.

The center recently was redesignated as a National Parkinson’s Foundation Care Center, meaning it provides a “gold standard” in Parkinson’s care, the release said.

The clinic, a part of CoxHealth, was established in 2001.

Carolyn, thank you for the good information you give us. We live in NC, are there any "gold standard" facilities here? How can I research this type of info. for this area? Thank you...Adelle

.. Ya know, I've always dreamed (sp?) of a place where i could live a life where one is a pampered parkie, with people running around catering to ones every whim, medications given on time, a caring shoulder to cry on (if that's what you want), other PWP around to talk about ones life and ones aspirations to. People who CARE, and can soothe the agitated moods that we get into. A place where one can live out the rest of their Parkinsonian existence in relative happiness and even have a "fun" time.
However, what do you think will be the future of MOST of US? We, who have worked hard all our lives to maybe pay off the mortgage of a little pink house for you and me; AIN'T THAT AMERICA ! .
And how about the Fred's of PD, those who live in a small trailor, with a cat for company and nobody to care if they live or die? And how about the women and men who have been abandoned by their spouse, to live in government subsidized housing, barely able to afford their meds, let alone food that is nourishing, and some kind of entertainment, other than an old TV, that they sit in front of and ruminate all day, barely able to get themselves out of their wheelchair by themselves to potty, let alone keep the place clean, do laundry and all the other things that make up a life?
For every PWP with their private nurse there are thousands who go under, and yes, even find themselves on the streets, living in a cardboard box.
Would we say that is was their own fault for being in such a position? Would we , and do we recognize that such PWP even exist?
Once again, my purpose for posting this is not to make you feel bad for posting about such wonderful places for PWP who are wealthy and can afford such luxury, but instead is to make the majority of the non- PD world realize that so many of the chronically ill live lives of poverty and lonely desparation, never being able to dream of affording such places to live, once they get to stage 5. Heck, just look at the world news as of late; as usual, floods nad famines that kill or displace MILLIONS of people, even the able bodied.
I would dearly love to be on a committee that would dispense trucks to gather up those PWP who live in such conditions ann and bring them to such facilities that you speak of, and insure that they were allowed to live out the rest of their advanced parkinsonian lives in a caring and loving atmosphere. I see MILLIONS of dollars wasted on "junk research" that only pads the pockets of researchers who can convince research granting agencies that they have a noble cause and a decent chance of doing something MAJOR towards OUR CURE; but all i see is cleverly set procrastination to ensure more future grant money roles in.
And all the while, WE suffer, WE the disenfranchised, WE the poor and working middle class, WE the people who deserve the services of organizations that you speak of, but who will NEVER participate in, because we don't have the financial mans to do so. HELL, they won't even give us the medication we need. Many PWP live lives where they really have to chose between food and other bills, and antiparkinson drugs.
I see something WRONG. I see it in my thoughts and it permeates my dreams; not for myself, for i am relatively well off, but for the millions of people suffering from chronic disease who will live and die lonely, deprived, existences.
It is THESE PEOPLE that I would like to see taken care of, and it has nothing for my own self agrandizement as being the "nice fellow" who cares about others. It is for the greater society that we live in, to really make it a place that cares for the sick and downtrodden, instead of that filthy almighty dollar. cs

Cs

When the time comes for all of us to pay the piper there also comes the time to look at what is happening around us. While I agree with the majority of what you have said there also comes the reality of the human content.

Many people have had the same conditions happen to them that you talk about and it was not because of Parkinsons or any other disease. We are not a nice entity on this planet and you only have to listen and watch the politicians and the scientists and of course the media to see and hear all the lies and false innuendoes that make the buck for the majority in this world.

You must not be born in a weakened condition be it health or money or merely sexual orientation to suffer the same fate as you relate.

Of course if you are talented and very good looking you can beat the odds on the last choice. But if you are not then that will be your lot.

Women have known this for all of their lives and now the men in our new affluent society are finding it out the hard way.

I feel for those who have Parkinsons as I do for many others in the same boat. But I don't for one minute think the world is going to step in and help them out, at least not as a group.

They will provide these houses of refuge that you mention but they will be for all who suffer and the need will be for all to be housed together. There will be no recogniltion for the specific needs of one group or another as that would be too simple for us to do. Instead of concentrating on one disease or another they will keep on trying to mesh us all together and it won't ever work.

I am finding this out now as did Tena when she had to go to the hospital and they treated her so badly.

They see the handicapped as a special breed of human, a handicaped person needing care. Of course they then run to their books again to see what exactly this one needs. Well some do and some don't even do that.

They know what your problem is so why don't you let them fix it. They think?

The time has come for the Parkinson community to do it themselves and find the funding required. I have heard it talked about before on this forum both here and at Braintalk but no one has taken the cause and run with it.

They have talked about it on the Als forum as well but the complications there run so much deeper that it is not a viable endeavor but here it is possible.

Just think where Fred would be today if we had of started it back then.

Is it too late Chuck for all of us or can we at least put the ball into play.

There she goes talking like a Parkie again. Well maybe in my heart I am one.

It's I think it's your bed time down there so sleep wella and good dreams

cs, I don't know what I have done to offend you in the past, unless it is just the fact that I share news in this forum, but your posts directed at me are unpleasant. Maybe if you would simply share with me what it is about me that offends you so much. Is it my Avatar, maybe my signature content, or maybe just the fact that I share something from time to time, which you usually have only negatives to say in reply.

I am not good at posting like AnnT or Paula_w, but I do try from time to time. While I do work with Paula, Peggy (pegleg), and a few others who frequent this forum, I don't try to out-match any of them. They are far more knowledgeable about many PD issues that I will ever be.

You know nothing about me and my life. I have had 58 years of mostly misery, ending with the last 18 yrs with PD. And I am sure you will have something wonderful to say about these two prior sentences.

Either tell me what it is about me that bugs you so much, or please give me a break!!

Thanks,

Adelle, This link will take you to the Udall Centers of Excellence listing:
http://www.ninds.nih.gov/funding/res...udall_centers/

Among the clinics listed you will find Duke University, Durham, NC:
http://www.ninds.nih.gov/funding/res...nters/duke.htm

Good Luck,

I truly have NOTHING AGAINST YOU. WHy you percieve that i do troubles me. I find your post interesting. Maybe it's that i feel that they apply to the minority of us, that i speak as i do. I am sorry if you take my posting as being AGAINST YOU PERSONALLY in any way, because they aren't. In any event, i will refrain from replying to anything that you post, That way you can't say that i have anything against you. cs

At the risk of being misunderstood, I am going to comment here. Carolyn, I read and re-read your post and the one by CS - no where did I find anything negative about what you said. I must mis-understand something. I understand exactly what CS meant and it in no way reflects poorly on your post. All he (I assume it's a he if not I am sorry) is saying is that many PD'ers are isolated and or very rural areas and do not have the wherewithall to take advantage of some of these wonderful facilities. I think he is just railing at the general injustice of this disease

Thats another reason I don't often look at this forum - people seem awfully hyper-sensitive and since I have never been noted for diplomacy, in most cases, I find it best I not comment at all.

You must have caught me on a day when I just didn't want to do the laundry.

I'm reading this one with a smile because I can totally relate to it all.

Lately, my back has become very bad....herniated discs and multiple protrusions, arthritis, osteoporosis, and oh yeah PD and dystonia. It hurts all the time. This makes me grumpy.

I think when you are grumpy, depressed, or post op, getting divorced, or are sick, one can look at things a little negatively - just ask a few of my friends about my recent whining.

This clouds your judgement and you can even get paranoid or misinterpret things. Before you become concerned, remember that Andy Grove, head of Intel, says "Only the Paranoid Survive" (he has PD too - I hear he has a future penthouse booked in the Ozarks).

The only thing that bothers me here is that Carolyn doesn't realize what an excellent poster she is.

no biggie here I hope,
paula

Thanks for the perspective, Paula.

Now I know why I have been called a survivor...per Andy Grove, "Only the Paranoid Survive." He can have his Penthouse in the Ozarks. I will stay in my lovely circa-1900 row-house that my son-in-law was so kind to assist me in obtaining.

cs, my sincere apology for my paranoid comments above. Please forgive me and continue to post when and wherever your care to post...including into my news items.