Hey Soccertese-
I know you don't get it and I understand your frustration, and it is a little hard to explain because it's thinking about things in a different way. In my case, wrong diagnosis from beginning -although I understand if a person squinted at my symptoms at that time somewhat myopically, one might be tempted to force a roundish peg into a squareish hole. But then years and years of these medications definitely cause a secondary Parkinsonism - which is not the same as an organic disease process, so there's another layer of complexity to deal with, and going cold turkey off these babies is not such a good idea.

BUT the point is we don't know for sure whether "real" PD has ever been reversed because we don't know everyone, because inconvenient medical anomalies are often ignored and swept aside, because on autopsy up to 25 -30% of Parkinsonian brains have not shown what would be the expected changes - or others that do, have not shown the expected symptoms. They say that about Alzheimers, too, and now it turns out Lou Gehrig didn't have Lou Gehrig's Disease but Something Else. It's a brave new world. There is a whole lot more to the sociology of diagnosis, but another day.....

Thank you all - Blue Dahliaaah! Carey, I am so inspired and excited by your post. Bob Dawson - you astonish me every time.

That is the question, isn't it? Nobody knows. I've been to so many scientific meetings recently, many on the topic of clinical trials recruitment, and it comes up over and over that it turns out at least some of the people involved in every trial turn out to not have PD after all. We don't know what we are dealing with. At least those who are studying PD understand that. I am happy because I have known since my dx that the PD I am living bears only partial resemblance to the PD that is described in the literature - and the science is finally catching up to that realization. I've never been an advocate for "the cure" - I've always been pushing for trying to fully understand what we are suffering.

In the meantime, we all should do the very best with the pharmaceutical and other resources at our disposal to get along as best as possible. This road has many different directions; each should find his or her own path; sometimes they cross - sometimes they don't. And this is a good place to share our various experiences.

fiona,
i'm not frustrated.
just asking straightforward questions.

"The whole issue of diagnosis or misdiagnosis - very, very loaded, and ultimately vitally important.

thankyou for including me in your response fiona...you have a nice circle of friends.

Homeopathy has its origins in Germany too and embodies a much different approach to diagnosis than the western medical model. Having studied and used this type of medicine successfully I know that there is no such thing as two people having the same identical disease, not to imply that there are not similar patterns.

Speaking from my own experience after 4 years of an "essential tremor" dx was then switched to pd dx because cogwheel rigidity combined with tremor was "definitive". but i tore up the prescription for s inemet 12 years ago and embarked on seeking many complimentary treatments till just about a little over a year ago. I was able to reverse a lot of stuff-sx changed and was doing well till my husband had a stroke and required intense caregiving by me...i did go without meds a LONG time and waited till I was tanking in the gutter. I kept telling my husbands neuros they should study me because i could show them what pd looked like without the meds.....yeh yeh they said- just didn't have time....

One problem is that people want an easy fix..take a pill. Let someone else deal.

Is this because we feel powerless to help ourselves or because we just can't wrap our brains around the fact that our very existence is a miracle and we embody that Golden Mean program too (thx for posting about that Bob ).

perhaps even technology will teach us to "become as little children"...enchanted..open and breathlessly anticipating great mystery to unfold which may be the paradigm shift that to "cure" this illlness requires...take for example biofeedback......

The Germans have an edge on education too - they definitely respect the right side of the brain more!

In nature chaos precedes reorganization and this process never gets finished! I just know there is a pony hiding under that big pile of manure...

BTW Fiona , if ya don't mind my asking. what were your sx at the time you were dealt the pd dx?

sharilyn

Hey...I just tried too post a response to this thread, but site will not let me post. I've been gone too long.....Help! I logged in and appeared to be kay until I tried to submit. Has Administrator suspended my log in? Help!

Joy aka "rosebud"

it's been a pretty long time. i'd like to get caught up,

For two days I’ve been thinking about and feeling inspired by Fiona’s thread about getting better and Soccertese’s about inner conflict. So many of you are articulate and thoughtful. The depth of responses has been amazing!

I, too, am getting better even though it has been nearly nine years since diagnosis. I had a story that could have been added to Soccertese’s list of PWP who experienced trauma and inner conflict and I, too, was (and still am) someone who “does” for other people. I had years of PD struggle – of not being able to walk to the end of my driveway, of not being able to get up out of a chair or up from the floor, of falling face first in the road, of wildly flapping tremor and fatigue and depression. But my symptoms are now under wonderful control and a person looking at me today would never guess that I have PD. I’m even starting to wonder about myself (chuckle); maybe I don’t/didn’t have PD after all? My world has expanded far outside the world of PD and I have a greater sense of wellbeing than I have had in my entire adult life. I wrote a post a while back about what works for me and why I feel I am doing so well. Having been accused previously of being a Pollyanna, it felt risky to write it but I shared in the hope that it would help someone.

In contrast, as the leader of a group providing support to people with PD and their caregivers, I have seen six people die of complications from PD and I have several friends now who are suffering mightily with severe and advanced PD. One person’s life is ruled by the “hollow people” (hallucinations) that follow him every day. Another tries desperately to communicate with me by phone from another part of the world, but I can rarely understand her weak voice as she dyskinetically weaves away from the phone. A caregiver just had to make the heartbreaking decision to put her husband in a nursing home because she could no longer manage the physical and emotional strain of caring for him at home. I could go on describing these folks, but it is enough to say that I worry about them terribly. They seem to be on a downward spiral. Progression is sure and swift. And there is nothing others or I can do to help.

So how does one reconcile one’s own “improvement” with the pain and suffering of others? Why am I the lucky one? And because I know what works for me, why can’t it work for someone else? Why am I able to, in Fiona’s words, move toward healing and why can’t that work for others? As Indigogo suggested, how do we get out of the “box” of PD and see the horizon?

Judith

Hiya Rosebud - I hope they figure it out so you can get back on!!

Yes, Judith, thank you for your experience and thoughts. Much is mysterious still - especially for me with the suffering of children who are ill and the aged.... But in general I think the meaning of the disease to the patient is very important to work with. But then that's when this intergenerational perspective becomes very important, because of the things that shape us that are bigger than us and beyond our conscious ability to interact with them - our great-grandparents' lives, etc.

For me with this new diagnosis thing - well, part of me knows that I kept looking until I got the exact answer I wanted - or was convinced was true - same difference? - from a medical authority absolutely sure enough of that view himself to convince me. And while I have worked with many fabulous healers, all of whom have helped, it took hearing it from a certain kind of healer - for me, a "real" allopathic doctor, demanding scans and such, and even more it helped that he was European, because it meant I had to go back to the area of the world where my mother's and grandmother's traumas occurred, to treat with someone who really understands me at a deep level because his mother went through similar things as my mother did in the same part of the world... That's what it took to get me someone who told me what I wanted to hear in a way I could believe it and finally put doubt aside.

That's why in many ways the details of the diagnosis don't really matter at this point to me - all that matters is how I feel about it, and what I believe is possible for me.

People have very different paths obviously, and many of us have to seek for a long time and confront deep things about ourselves in order to find what we are looking for, either in healing or in accepting a disease or in passing through this world....I'm not saying everyone's situation is their own fault. I think we all are doing the best we can to understand what is going on for ourselves and for others.

fwiw, that's not my thread. not my style nor interest.

Why are your comments so negative and skeptical?

Trixiedee