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paula_w 11-30-2006 07:38 PM

stuff
 
Well of all the letters I fired off to editors during election week, this little comment made it into this week's U.S. News and World Report

1 of 1 DOCUMENT
Copyright 2006 U.S. News & World Report
All Rights Reserved
U.S. News & World Report

November 27, 2006 Monday

Campaigns for a Cure

Parkinson's disease patient Michael J. Fox is uncomfortable and suffering,
but he is not a desperate patient as described by Lerner in his interview. Fox
never fails to call this illness a blessing and his experiences, as a result,
enrichment to his life.

PAULA WITTEKIND
Florida State Parkinson Action Network Coordinator
Parkinson patient for 17 years
Rockledge, Fla.

With bad formatting, it looks almost as long as the heading and signature...lol

Im a national yapper now; good time for a study to come out saying women naturally talk much more than men.;)


Oh and a point was made- don't call us desperate patients and describe us as pitiable.

So Houston, we have a problem.....everywhere you look. No one is going to save you....we are the hope. Will you think about tracking one treatment in the wonderful database we are launching that took us five years to get with lots of help from good people. NOw it's perfect but must stay updated. Think about it - just one treatment - and you don't have to enter it.

Much communication works. BUt you have to have the knowkedge to have anything to talk about or make them look at it from our view.Then the real feelings come out - like the two aforementioned.......oops slip of the tongue - tell that to Mel Gibson.

Thanks for reading the ramble.

michael7733 11-30-2006 08:52 PM

I still think I found it...a post from long long ago.
 
I was pretty excited that night.

Quote:

I FOUND IT, I FOUND IT, I FOUND IT!!!!!!!! ONE REASON WHY THE NEURONS DIE!!!!!!!!!!!! SOME OF THE POSSIBLE CULPRITS AND HOW THEY DO IT!!!!!!!!!!!!!!!!!!!! A METHOD OF IDENTIFYING OTHERS!!!!!!!!!! TAKE A LOOK----IT IS DOCUMENTED, SCIENTIFIC DATA AND NOT SPECULATION ON MY PART!!!!!!!!! START POLISHING YOUR DANCING SHOES!!!!!!! quote: "58.What is a cytochrome? (Notes, 36) The cytochromes are electron acceptors which as a class are heme-containing proteins which mediate Fe+++/Fe++ one-electron transfers. There are five cytochromes with increasing electron accepting potentials. The heme in cytochromes b, c1, and c are Fe-protoporphyrin IX which is also the prosthetic group in myoglobin and hemoglobin. It is covalently attached to the protein in these cytochromes. 59.Which cytochrome is responsible for the reduction of molecular oxygen? (Notes, 36) Cytochrome oxidase. Contains cytochromes a and a3 as a complex, they are the terminal electron transport carriers. Each have a different prosthetic group, heme A, but the same basic Fe-tetrapyrrole structure. It also contains two copper atoms which alternate between Cu++ and Cu+. Electron transfer through cytochrome oxidase is inhibited by cyanide or CO which appear to bind very tightly to the cytochrome a3 moiety. 60.What type of structure is protoporphyrin IX? Where does it occur? (Notes, 36) The heme in cytochromes b, c1, and c are Fe-protoporphyrin IX which is also the prosthetic group in myoglobin and hemoglobin. It is covalently attached to the protein in these cytochromes. 61.What are several agents which inhibit electron transfer in the process of oxidative phosphorylation? (Notes, 33) It is of scientific and medical interest to note a number of chemicals which inhibit electron transport at different sites. The lethality of cyanide and carbon monoxide depends upon the selective blockage of cytochrome oxidase. Cyanide binds to the ferric form of iron of the (a) cytochromes and carbon monoxide binds to the ferrous form. The antibiotic antimycin A blocks electron flow at site two (cytochrome reductase), wheras rotenone and amytal block electron transfer within the NADH-Q reductase complex (below). Blockage at any site interrupts the generation of a proton gradient (below), and ATP synthesis is inhibited. Blockage sites: 62.Define the "uncoupling" of oxidative phosphorylation. What are several agents which uncouple oxidative phosphorylation? (Notes, 38) The chemiosmotic theory is supported by observations that compounds capable of disrupting a proton gradient across the inner mitochondrial membrane effectively UNCOUPLE oxidative phosphorylation. "Uncoupling" means that electron flow and oxygen reduction proceeds without simultaneous formation of ATP. 2,4-dinitrophenol (DNP) and other phenolic compounds are effective uncouplers. These lipophilic compounds transfer protons across the inner mitochondrial membrane, breaking down the proton gradient. 63.How does cyanide inhibit oxidative phosphorylation? How does carbon monoxide inhibit oxidative phosphorylation? (Notes, 33) The lethality of cyanide and carbon monoxide depends upon the selective blockageof cytochrome oxidase. Cyanide binds to the ferric form of iron of the (a) cytochromes and carbon monoxide binds to the ferrous form. 64.Brifly describe the "Chemosmotic Hypotheses" of oxidative phosphorylation. (Notes, 37) The coupling of OXIDATION and PHOSPHORYLATION is indirect. Briefly stated: 1.protons are pumped from the inner to the outer side of the inner mitochondrial membrane during electron transport. 2.the inner membrane is not freely permeable to protons so an electromotive potential is established across this membrane. 3.a transmembrane multisubunit enzyme ATP synthetase (intrinsic to themitochondrial membrane) converts ADP to ATP as outermembrane protons re-enter themitochondria through a channel coupled to ATP synthase. Supported by evidence of the pH gradient which exists across the inner mitochondrial membrane.... "I didn’t say it was easy to understand. Are you excited, michael?? You betcha!!! michael oops. I forgot to give the source: So, what has caused me to come to this conclusion? First, what is that conclusion? I have concluded that a class of substances that can potentially cause Parkinson’s disease, has been identified and profiled. By using that profile, we should be able to identify other substances with the same profile and test them to see if they do indeed cause Parkinson’s or Parkinson’s like symptoms. It’s like reducing a haystack down to a handfull of hay. What brought me to this conclusion? Well, tonight I started thinking about some of the products that I have used (alternatives) that have given me significant improvement. I realized that most of them had Hydrogen in their formulas. I then looked at what goes on in the mitochondria, and I realized that Hydrogen is a key element in the production of ATP, the energy of the cell. I then saw that NADH gave up its Hydrogen in the process, so in my mind, it is a hydrogen donor. That is what I called it, anyway. I did a Google search on ‘Hydrogen donors,’ and there they were, along with ‘Hydrogen Acceptors.’ "Hmmmmmmmm" I said. Then, I asked myself, "What are some Hydrogen Acceptors?" Guess what I found in the list. I found, among others, Iron, Manganese, copper, and Rotenone. Every one of these are suspected as possible causes of PD., but I have never seen anything that said they were in any way related. Next, I wondered if there were a way to identify other such substances. Low and behold, there is a database into which one can submit a specific profile Query, and it will spit out the names of substances that match that profile. By this time I was really getting excited. Next, I learned that many of these substances can be neutralized. WOWZERS!!! Do you know what that means?? That’s how I see it, anyway. I think that we can reverse this disease in many if not most cases. NOW I AM REALLY EXCITED, BUT NOBODY IS AWAKE!!!!!!!!!
Whatever happened to that guy?

michael

michael7733 11-30-2006 09:01 PM

Sorry Paula
 
...and you thought yours was a ramble, Paula. Oh by the way. I appreciate all the effort that you put into all you do for the Parkinson's community. I know it must feel like a thankless task at times, so.......Thank you, Paula., and thanks to all the other advocates and researchers out there who work so very hard.

michael

lindylanka 11-30-2006 09:51 PM

Paula,
keep on going, as you must, and be as vocal as you are for as long as you can! You are a treasure as are all the people who push for a better future for PWP's.

I for one have no objection if those who seem to want us to look pitiable instead see that we are ------ off by being expected to lie down and take this disease. Especially those wearing the snazzy gold-plated blinkers.

I wonder if they will ever get round to using the databases to ask the real questions, from real people with real lives. Or will they just use it as another pharma tool....

I could go on at length about why I feel that the whole overview of PD needs a re-definition, but I would enter into the realms of rant, rather than ramble :D

I am currently fantasizing about developing an outfit on the lines of the gear they use so that men can feel what it is like to be pregnant, but for people who I would like to get to understand what it is like to walk in our shoes ............... any suggestions, both for the outfit and the people :D !!

Actually, I would rather this disease than the one that makes people see those with long-term conditions as pitiable - you meet much nicer people!

paula_w 12-01-2006 08:34 AM

about hope
 
Thank you Michael and Lindy.

Michael I think we all go through stages of "craziness" for lack of a better word, but it's often a productive craziness. Joel Havemann, of the La Times just wrote an article called "The Best medicine may be hope." We got permission to reprint so here it is at:

http://grassrootsconnection.com/HaveHope.htm

He refers to our diagnosis as our own "personal 9.11".

Havemann has also written a book A Life Shaken: My Encounter with Parkinson’s Disease

Thelma 12-01-2006 03:22 PM

Our material and intellectual advances have outrun our moral progress… It is not enough to have the power of concentration… but worthy objectives upon which to concentrate."


Together we can move mountains

Todd 12-01-2006 07:13 PM

I read Joel Havemann's article in last Sunday's LA Times and it was nicely done. I've put his book on my Christmas list as I've heard really good things about it and am looking forward to reading it. And I'm hoping we can work it out for him to come and speak at the next NPF young-onset convention in Chicago next July. He's very well spoken and has great insight that I hope he'll share.

Thanks Paula for putting his article on your site. I hope everyone takes a few moments to read it.

Todd
PDTalks.com


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