[Fiona]

Hello to everyone. I wanted to acknowledge that after a period of intense discourse, writing, pushing for ideas, etc., that I plummeted suddenly from the scene. First, I wanted to say that on on no account was it because of a reaction to any individual. On the contrary, I have deeply missed everyone, and hope that the summer has been good in some way to each of you. What's been happening with me is that I suddenly came to a total realignment of my feelings about my illness, and am finding that I need to pursue a totally new way of thinking about it. It's a very personal thing, partially in response to actually having written and read a lot about PD. And it's a result of encountering different points of view, some of which were familiar to me before, but now are hitting me in a new way.

I agree with the thought that PD is not any one discrete condition. I think it is rather a collection of related symptoms. I think who the patient is, is of far more relevance than constricting the description of their aggregate symptomology into what is ultimately an arbitrary categorization. I feel that this is what happened to me when I was diagnosed as the age of 34, and that I was fed into perhaps what was a well-meaning Parkinson's machine, assured that any response I had to the medication was proof positive that I had embarked on the first stage of an inevitable decline. I don't believe that any more. There are increasing reports of the percentage of Pd patients who are probably misdiagnosed - from 25 to 30 percent by many observers. Some of those had to be on PD meds, so it means that one can have a response without actually having PD upon autopsy. I feel that many more avenues could have been explored before sentencing me to what has seemed pretty much life in pharmaceutical prison.

I have read a number of fascinating books about the brain lately, and other articles about the placebo effect, that have shown me how acutely the mind can affect the body. And I think the body is entirely capable of taking a diagnosis so much to heart, that it keeps replicating the symptoms in the way that the mind imagines is inevitable. I do not believe now that "progression" is certain or absolute. Nor do I believe that there is going to be one cure that totally does the trick and reverses this thing. I do believe that there are a great many things that can help many different people in many different ways. This whole conundrum is so multi-dimensional, that that has to be the case. One size can't possibly fit all, and clinical trials or medical approaches that are based essentially on that idea don't seem believable to me any more (leaving aside the giant issues of conflicting interest and corruption). I think anecdotes might be where it's at, a lot more than has been accepted. If the placebo response varies significantly in trials of new drugs that are conducted in different countries, so much so that it affects the marketing of those drugs, it seems clear that differences in cultural approaches to the body - only one variation of a huge possible number of different contributing influences - are actually about as strong as the drugs themselves in many cases.

Many of you know this, or are already proceeding in some degree with some of these assumptions already in place. I got to a point where I had to really change the way I think about myself. I have stopped telling myself I have Parkinson's, and stopped telling others, too, as much as I can. I do have some issues about being reliant on these little dopamine pills I'm taking, but confident that I can find a way to live a full, satisfying, and actually improving life, even when they are still in the picture. I am interested in finding as many positive things to help me as I can. SO I had to stop the immmersion into PD activism for the time being. I am not looking for a monolithic cure. I have to stay out of being involved with assaulting the incredible shortcomings of the medical system for the time being, because it makes me too angry and frustrated. And that stress was not helping me.

So I know this is a somewhat self-centered approach, but I have to do this right now to save my own life. Because the more I got involved with trying to solve the problem of Parkinson's, both for myself and others, the more it claimed my identity and my energy. I have to let go of that identity, and be a different person.

I really, really care about everyone here, and I want to stay friends, etc. And I plan on contributing again. Shortly I am headed overseas again for a few months to investigate some different approaches to health once more. I may not get back to this board so frequently for a while - anyone that would like to stay in touch, send me a personal message and we can trade emails or whatever.

I have had an incredible summer of swimming with my 80 year old mother every day. She has been in a wheelchair and has not fully walked in 15 years or so. Her diagnosis, based on bloodwork and the physicians' opinions, is rheumatoid arthritis. She found a doctor who believed in her ability to heal, and believed she was worth it. She threw away most of the medication. Today she got her second knee replacement, and is expected to be walking and even folk-dancing again. She is planning a trip home to Europe. Every day this summer as I swam beside her, I saw the years drop away from her face and being. She would drag herself out of the water clutching her walker, each day getting a little stronger, totally wasted and atrophied muscles redefined. She looked to me like Venus on the Halfshell, rising from the seas. I never expected to ever see that happen. It is possible to return to the living rather than sliding inevitably down the chute. We try. We keep trying - right now I'm focusing on all the grains of sand that are in my hands, rather than those slipped away.

[lou_lou]

you can leave reading posts, that you find on wellness,
as I do - I can not believe I have PD forever, because I do not!
eternity has blessings in it!
live while you are alive, and as the cancer machine processes its BS...
My sister was give 6 month or a year if she did not take the chemo!
2 years later shes and her husband are alive and well in Colorado, her dream was reality,
when she changed her diet - pH balanced her body, and with OUT chemo,
she LIVES!
her one oncologist after they checked her and found no Cancer, was amazed...
the Fear doctors tell us things they should not say, and we should not believe
"you will die in 6 months" is fear
fear makes us more acid - throughs off our pH balance...
Cancer is a Fungus!
- PD is something we can defeat ourselves, with prayer...
thinking of you...
love,
tena
PS:
I only tell you what I take - you may need to check with someone called a Dr. - I have to say this-
since I have been taking Co Q10 and Alpha Lipoic Acid & Garden of Life's
Oceans 3 - better brain, the meds I do take, I have been able to extend the time between doses...
I dont eat red meat - I am not a total vegan, but I eat healthier/ I think healthier...
we are what we think - I am becoming full of life...
Peace, Love, and Light

[girija]

Fiona,
So nice to see your post. I just sent you an email before I saw your post! As always, I find your post very interesting and something I can relate to! I too believe in the mind-body connection in PD and I have experienced both the negative and positive sides of it too. Needless to say, I am sticking to the positive thinking philosophy (even if sounds like denial to others!) as well as alternative treatments. As per my neurologist, both my physical as well as cognitive functions have improved compared to an year ago. I hope your new approach to PD does the same for you.

Wishing you the best.

Girija

[paula_w]

Science is struggling to understand this too Fiona. I hope you discover new possibilities and benefit fully from what the human mind/body is capable of. Please keep in touch.

And congratulations to your Mom - what a comeback!

paula


Wired Magazine, Aug. 24, 2009
Placebos Are Getting More Effective. Drugmakers Are Desperate to Know Why.
By Steve Silberman

" From 2001 to 2006, the percentage of new products cut from development after Phase II clinical trials, when drugs are first tested against placebo, rose by 20 percent. The failure rate in more extensive Phase III trials increased by 11 percent, mainly due to surprisingly poor showings against placebo

http://www.wired.com/medtech/drugs/m...urrentPage=all

[jcitron]

Hello Fiona,

I'm glad to see you are doing well. I too have had some differernt thoughts about this "condition", and like you I've tried my best to live a normal life.

I discovered that this is part of the acceptance process. As we understand that the PD is part of our being, and there's really not much we can do about it, there's no sense in moping about, getting in a huddle then crying about it. It won't make it better; it only makes things worse the more we dwell on it.

So having said that, I am pursuing my life's dream. I'm going back to school full time for music. What have I got to lose along with all the more to gain. Education is good for the mind as we've found out. It stimulates the neurons to heal and reconnect if they can, and keeps our mind intact. The physical aspects of walking will be good. I do a lot of that anyway, but being on campus will require more exercise. Being around young people, much younger than me, will be truly stimulating. Heck I think I can teach them a thing or two and even contribute to the education process at the school. I envision myself as becoming an adjunct faculty or end up in some kind of education-related field afterwards.

Granted, I too need to take those nasty yellow, blue and orange pills on a daily basis. I measure them out during the morning and consume them all day, but without them I'm a useless old fart. So reluctantly they've become my reminder of what's at my core that I try my best to ignore and go on living.

I'm glad you posted what you did and I send my greatest thank you and commendations. This is what life is all about. We learn, we consume, and we deal with it all the best we can.

John

[AnnT2]

Your post was the most uplifting thing I have read in some time. I wanted to write back immediately, but I was swamped with other things. My response may seem a little disjointed, but bear with me.

Sometimes for fun I do cryptograms. Last week I attempted one which was very difficult to solve - not because I could not get that first clue, but rather because there were so many feasible ways to go. Parkinson's is little like that. There are so many solutions to such a variety of symptoms that sometimes we get lost not because there is no relief in sight but rather because there is a myriad of choices. Take Sinemet,don't take Sinemet is only the first challenge.

Like you, I also get so immersed in the Parkinson's arena that I don't realize there is a world out there which I have eschewed because I have to solve this damn Parkinson's puzzle, or cryptogram, if you will. A tactic with a built in failure button.

The notion that I am going to get progressively worse causes me great anxiety, but the fact of the matter is that the perception is worse than the reality. I have had this diagnosis for 13 years. During those 13 years, at times I have doubted I had it, despaired that I had it, ignored that I had it, tried to cure it, been angry that I had it and eventually just wanted to throttle the disease right out of my life. However, I never have accepted it.
I find that your approach of not allowing yourself to be sentenced to going downhill gives hope. Just get up and dance, carry a heavy chair, stand in front of a class and speak, join a gym. What the heck are we waiting for?

A long time ago someone wrote in a post that each day when she does some physical task, she tells herself that if she could accomplish it that day, she will be able to do the same thing tomorrow. Your post made me realize that whatever I want to do,I should just do it. As for life, as the TV commercial says, "It's on!"

Thanks for your thoughts.

Ann

[Fiona]

thanks everyone for your thoughts and comments...

Ann, I just wanted to add your beautiful train of thought here...for years I have suffered excruciating full-bodied dystonia, usually several times a week. It is now diminishing more and more over the past three or four months. I used to take up to 5 Benadryl in order to stop it, would never go anywhere without having Benadryl with me....Now it seems I can make it go away with a quick aromatherapy moment with some lavendar oil, a couple of stretches, and some calm breathing. I don't even travel with Benadryl anymore. I am taking less medication now than I was two years ago. SO I can't help seeing this as improvement, and not "progression."

I do not accept that anything is inevitable.