Oh my gosh! I have been saying the same for ages. There really is a lot of money in the medicare kitty -- or there would be, rather,
if so much severance pay wasn't paid out to those who were fired (Canada),
and if so much money wasn't spent on technological toys.
Now I see that in my area they are going to have a health and wellness festival. These medical people have money to blow on all kinds of things except for patients! They should be thrown in jail and have all of their toys taken away. Technology is nice but there has been such a mess up in records since this new electronic system was put in place. There have been errors in my records and I have received double tests and so on. Furthermore, it will cost millions to upkeep this in the future, renew software, etc. and it markedly threatens all forms of privacy.

Many millions of medical records around the world have been stolen through carelessness yet nothing is done to change it. Half of these people still refuse to even encrypt it.

All of this reminds me of the person at home. They buy computers thinking they will save them time and the next thing they know, they get very little done and waste more paper than ever. Technology certainly is destroying the world more than helping it, it seems. Think of the cheap operations you can get in other parts of the world now. Here, people die because all of the money has been spent on foolish things that are actually killing patients versus saving them.

Hi,
Im a new member. I m 63 and recently found I have parkinsons symptoms
I probably have had it for several years now and until this year ive been able to cope with the symptoms.This year my loss of my sense of smell along with more muscle tension and symptoms my father had.

Id like to tell all of you how my involment with Recovery Inc. i joined this group because i always had problems with nervous symptoms.The root cause of these symptoms were due to my tempers(fear and anger)
Recovery Inc. has taught me how to change my old habits of thinking and has helped create a sound emotional health.
This training has helped me immensly with dealing with parkinsons. In Recovery we learn we can't control how we feel but we can change our thoughts and control our impulses.Eventuly we soon start feeling better after using the method.
A example using this method with Parkinson.I sat in my chair for awhile. When I got up {eventualy} i was stiff and walked like creeping.
I knew I could move my muscles and lengthen my gait and soon the feelings were gone.
i know I cant totaly eliminate the symptoms Im experiencing now but I do know I can greatly weaken their impact on my emotional being.
Recovery Inc. now call Abraham Low Self Help.would be a wonderful resource for anyone suffering from emotional distress.

Thank you Tammy for sharing your experience.
The best cure IMHO is in the miraculous way that our bodies, minds and soles adapt to illness. Continuous pain for example will stop to hurt after a while, and this applies to symptoms of PD.
One needs to believe in destiny and surrender to it with patience, perseverance and hope.

Tomorrow is another day and no body can tell what it will bring.

Tammy: I feel humbled when I hear your story and that of other people on this forum who have been sruggling with the beast for a life time and managing to remain positive, squeezing meaning and joy from this unfair life.

The initial post seems a little bit too negative. I am 100 % convinced that PD will get cured. The most straightforward technique will be stam cell therapy. There are hurdles that need to be overcome, but once science overcomes them, stam cell therapy will cure PD. You can compare it with an problem in your car. When something is not working fine, you just replace it with a new one. This always works.

I am not sure though about the timespan. I really hope for all of you that you will all benefit from the cure.

I also read about inosine lately. If inosine indeed increases urate in the brain, then I am almost sure this will slow down the progression of PD. If it is correct that studies show that patients with increased urate levels have a much slower progression of PD, then inosine almost surely has to work.

However, I have big questions mark about the way current research is conducted. To state an example ... CoQ10 is shown to not slow down progression of PD. As far as I have seen, people with PD react differently to all kind of medecines. Maybe CoQ10 slows down progression in a specific type of people. For example, it is shown that only people with a specific kind of gene experience slow down of PD when taking more than 3 cups of coffee a day.

I have to agree with reverett that patients could all help to find a cure. If there would be a big database in which patients would gather the meds, supplements, doses, their age ... they are taking, it would be possible with advanced machine learning techniques to pinpoint which supplements and meds would probably slow down the progression of PD. Last week my doctor showed me that he has documents on his computer of all of his PD patients containing this data (passed by the neurologist). So it is possible to make such a database. And this database would generate conclusions much faster than the current way of working in which preclinical and clinical trials have to be performed over many many years before getting a conclusion.

What might also be needed is a foundation that collects money to execute clinical trials on products that cannot be patented. I read interesting things about lithium orothate. I find papers from even in the 90's writing about the positive effects of lithium on PD. Then, there is a gap of more than a decade in which nothing is published about lithium. And suddenly in 2011 again I started reading about a new study in which was shown in animal models that lithium would protect the neurons. I was shocked about this and contacted the MJ fox foundation about it. But I didn't get any response from them. If all patients would combine their forces and make such a non profit foundation, old research results could be tested in clinical trials.

Year after year people come here who have been re-diagnosed, de-diagnosed, and so on. It is confusing. WE are confused. I think the doctors are too. They need to look at PwP closer, without this how is there is hope of for treatments to emerge for us all, with all our differences

They simply do know know enough about what is happening in PD.

On another thread this week Bob Dawson has commended the idea of looking at the 'red swans'. See:
Lets hear from long term survivors http://neurotalk.psychcentral.com/thread168722.html

I'm not thinking ahead of what new treatment will come for me.

I am trying to survive the ones I have.

Well I do believe all of what you said. I don't have PD but multipal auto immune diseases. Have you ever read " Silent Spring"? this book I think was written in the 50's or early 60's, don't remember. However, Mayo clinic when they talked to me, hinted around that polution may have been an issue with me. I grew up spending my summers in Saugatuck Michigan. I picked blueberrys in the fields all summer long, filling up like a little girl would. Those blueberrys were being sprayed with DDT. A chemical now banned. Also Thellinium was a heavy metal known to contaminate ground water. I do think our environment is problem, and has been for many years. Scientists are starting to put this together. What you said is true. I am not sure I want the nano bots in me, producing the proper antibiodies either, but I know that is what they are looking at with individual diseases. I hope there is help that can be found. My health conditions already took all the finances that two generations saved for. I now will loose my home. I cannot expect my son to pay for me to stay in my home. I wasn't able to get health insurance because of pre-existing conditions. So I know the financial toll, PD and others place on families. Noboby can afford medical care these days, not with cronic illness. I do not know what the answers are, I just know that alot of us are suffering, and much of it is what has happened to the environment. I do wish you better days Paula, I hope for all of us too. Thank you for bringing up this subject, because I am sure alot of folks are thinking about it, even if they do not voice it. take care, ginnie

Paula, you mentioned in the beginning of t his thread something about providing a different environment or adapting to a new environment in order to survive...A few years back I wrote a short science fiction storythat touches on that scenario. Befo re i paste it here, however, I would like to say thankj you for being you and I have too much in my brain concerning this subject about being around to see a life saving treatment . I don't exactly know how to reduce its content, but i will try after this little fiction story...


The Passage

April19, 2016
The morning's eastern horizon was like no other that I had ever seen. Several shades of blue and rich green had joined the already present gold, pink, red and lavender. The sun rose slowly into the color-laden sky. I wondered how such a beautiful picture could be the introduction to such a painful chapter of man's existence. My mind was glued to its gentle ferocity. The ease with which I viewed its approach was soon dwarfed by the irreversible alterations upon which its arrival would insist. Only a handful of the 7 billion inhabitants of Planet Earth knew the meaning of this approaching phenomenon. After the passage, life would be forever changed, but the subtlety of the change would avoid detection until the development was complete. My eyes closed to avoid weeping. My heart closed to avoid feeling.

Part 1
Saturday, June 7, 2008
I use to hear my uncle Raymond say, "If I had known that I was going to live this long, I would have taken better care of myself." I would always laugh at his remarks concerning life, but now their recall brings only remorseful memories of his cruel demise. That was many years before lung replacement was available. I sang at his funeral.
"Hey, Jerry. Hellllloooooo, anybody home?" Lane's hand was dancing in front of my face as his distant voice brought me back into reality. "hey, bud, wha's up with all the heavy thinkin'? It's time to chase a laid-back summer. School's out now, so lighten up." His words made sense......or did they.
We had just finished our last final exam of the semester, and we were looking forward to a long, laid-back summer filled with friends and lots of parties. I must have been thinking about that last exam on the history of xenotransplantation. The discussion question concerning the steps that were necessary to "transcend morality" in order to make this procedure a reality was weighing heavily on my mind. I just couldn't shake the feeling that we were missing something significant when we allowed the passage of that bill that gave certain teams the go ahead for a ten year research program to explore the possibilities of its usage now that the procedure was nearing perfection.
"Earth to Jerry, Earth to Jerry, come in Jerry." Lane's high-pitched, vibrato voice was an example of what had been accomplished in the last few years. Although his voice sounded strange, it was a definite improvement from that little box he spoke through as a kid. At an early age he drank some household ammonia, and it destroyed his esophagus and vocal cords. I often wondered how anyone could actually do that, but do that he did. It was just this year that he had received his brand new, almost human esophagus and vocal cords made from genetically altered pig tissue. Genetic material from a human cell was combined with mesodermic differentiated pig stem cells and allowed to develop as a part of a pig embryo. The moral issue was skirted, because technically, the resulting hybrid was neither pig nor human but interchangeable with both. I am still amazed by this.
"Oh, hey, Lane. I was actually thinking about you and my Uncle Raymond. You sure aren't wasting any time getting into the party mood, dude." Little did we know that this would be the last summer we would enjoy together. August would bring with it the beginning of "The Passage."

--------------------------------------------------------------------------------
Part 2
The campus felt empty amidst
the bustle of hurried feet. Tere-lyn and I stood outside the recently completed biotech building. I passed the small urn to my companion in grief. Tere-lyn and Lane had become very close in only four weeks. They met at a party and quickly hit it off. I had envied Lane, for Tere-lyn was absoutely beautiful. Her sweet, genuine attitude was the piece de resistance that stopped my heart each time I stole a glimpse of her, and it made her irrefutably, the most gorgeous creature on earth. I dared not allow my captured heart to be revealed. She and my best friend were to be married soon.
The encystment of the virus had allowed it to avoid detection. It had awakened and remained unnoticed for too long to stop its death march. It happened in only one day. Even the look on Lane's face was one of surprise. He tried to smile as he whispered to me his final prank.
So, there we were, standing before some of Dean Howard's prize, hybrid Trumpet Roses with the urn containing Lane's cremated remains. It was his last request. As his two best friends, we really didn't have a choice. We had to do it. I could tell it was going to be a long semester without him. As we poured him over the hybrids our hands touched, and our eyes fastened upon that touch. I think Lane would have wanted it that way. We moved closer to each other. Our embrace was one of impassioned sorrow. Lane would be missed, but we both knew that he would approve of our unrestrained love. After all, the three of us had been secretly chosen to be a part of The Passage. It would all begin in a few, short hours.


--------------------------------------------------------------------------------
Part 3

Christmas break (2008)
Where had the semester gone? It seemed like yesterday that Tere-lyn and I stood together granting Lane's final request, but yesterday seemed like a lifetime ago. My life was changing rapidly, and I found myself groping for just a small piece of reality to hold onto in order to sustain my sanity in an insane world. Tere-lyn had become that reality. The first time I finally allowed myself to look fully into her eyes, I became completely and helplessly displaced by the magnitude of their passion. I belonged to
them, and I had no desire to escape their mesmerizing , trance-inducing beauty. I was hopelessly in love , and I found myself trying to wish away that for which we had been chosen.
Christmas was approaching. I wondered at the fact that we still celebrated this holiday. All my life I had been told of its meaning and how a child, born of a virgin, who came from Heaven and was the Son of God, did no evil thing, but was crucified, bled and died for our sins and was raised again on the third day, was seen by many and was lifted up to Heaven again to sit at the right Hand of God forever in eternity. It all seemed to run together now, and the meaning of those jumbled words seemed to add
antithesis to our existence. I suppose the real reason for keeping the celebration of the holiday around was to provide a season of escape from the madness of the times in which we lived. The ease with which they were beginning to restore missing or damaged body parts was quite amazing. It also brought with it a throw-caution-to-the-wind attitude. The double-dog-dare that had been prevalent in the 1960's was back, and it had taken the earth by storm.

michael boyle

to be continued

The U. S. government has published two documents that changed things
One dlcument stated that uncoupling the oxidative phosphorylation process would cause parkinson's disease . The other one said that agent Oange, a herbicideuncouples the oxidative phosphorylation process . Now there is the following: http://www.hindawi.com/journals/pd/2011/617472
The above URL will take you t o an 18 page abstract which
/Parkinson's Disease Volume 2011 (2011), Article ID 617472, 18 pagesdoi:10.4061/2011/617472. It basicallly tells us thatg the uncoupling of theoxidative phosphorylatio process can be reversed and pathways can reconnect


I sent the following email to the Howard Hughes Medical Institute in Feb 2005. no one responded.


Hello. I'm sitting here at my computer...somewhat angry...extremely
confused...yet hopefully excited, about what I spent the past few
hours reading (well, skimming) on your website. I read of SLIT
molecules, voltage-gated ion channels, oxidative phosphorylation
inhibitors, bundled hairs in the cochlea that affect hearing,
balance and Ca2 transport, neurotransmitter dispersal, an a myriad
of other such topics, written by individuals who are obviously
geniuses and passionate in their fields of study.
I, Michael Boyle, on the other hand, am of mediocre intelligence,
and I have been plagued by Parkinson's disease for over 14 years
now. As to why I am somewhat angry...this disease is robbing me of
life, liberty and the pursuit of happiness by slowly locking me
inside an uncooperative body. As to why I am extremely confused, I
cannot, for the life of me figure out why I am still plagued by this
disease.
Now, as to why I am hopefully excited, I know now that you at HHMI
have already uncovered all of the mysteries that have veiled this
mysterious disease for decades. What seems clear, however, is that
you haven't discovered one last important factor...HOW TO PUT ALL
THAT YOU HAVE FOUND INTO A WORKING SOLUTION. Please, respond to
this rather sarcastic email, and tell me to whom I should speak
concerning an individual who just might have access to that final
factor in the puzzle. Please, let's not put this off any longer.
I, and millions like me are slowly dying without dignity. Help.
Michael Boyle


YES, Paula, I believe the cure is right around the corner.