Parkinson's Disease Tulip


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Old 06-18-2008, 09:43 AM #1
Fiona Fiona is offline
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Default permanent acupuncture implants and my story

Hi everyone. I just got back from Spain where I worked with this amazing dcotor.
www.werththerapie.com

I now have 128 permanent implants in my ears. It was not cheap. However, considering what I've spent on COQ10 alone in the last few years (especially now that studies show it's not really effective in relieving nuts and bolts symptoms), let alone everything else, it was not expensive. I had several top acupuncturists review the website before I went and they all were super impressed and thought this guy sounded like a genius.

Having met and worked with him, I would concur with that evaluation. I went to this treatment knowing something about acupuncture and its methods, and knowing that it is not easily reduceable to Western scientific methodology. In my view this methodology so far has had very little of the sophistication or vision to begin to comprehend energy meridiens or the organic clarity of some systems of thought about the body, bent as they are to reducing things to one isolatable element (and usually with the profit motive underlying it), which is often so reductive that it is completely denatured from the network of wisdom underlying it.

I realize these are fighting words. But in my own struggles and journey with PD, I have come to the conclusion that this condition is hugely variable among people, and has much to do with individual responses to various stresses - both environmental and personal - and that therefore there is not one vitamin or chemical or surgical technique which is going to be the big overnight cure that will "do it" for all of us.

I firmly believe that healing is possible from this condition. I think it takes seeking out many possibilities and effecting many lifestyle changes. But underneath all of those, I think the truth is that healing does come from within, from somehow finding the essential life energy that will direct these adjunctive elements, and allow and surrender something about ourselves so that the natural healing force of life can redress our imbalances.

I have sensed an immediate improvement with these ear implants, although I have just returned and my ears are still healing. My expectation going into it is that this therapy will not be fully effective for probably a few months, and that after two or three years its full benefits can be manifested. This makes sense to me - I've had this condition for a long time, and the body will take time to gradually realign and right itself.

Dr. Werth cautions that his therapy cannot be effective without a strong sense of will and a positive attitude towards it. I understand that given our experience, many of us are very guarded and arms folded across the chest about many things, and according to our different belief systems, things that appeal or will be effective for some will not be for others.

For this reason, I am not going to post more about this, because I sense many people on this board are not interested in this kind of approach, and that the main input that is trusted and respected is that of the immediately quantifiable type, and especially when submitted by male voices, and preferably European or American ones...If this sounds a little sad or disillusioned, I am feeling some of that. But I have so appreciated everything that people have shared - it has all helped me so much.

And I'm sure I will be checking back to see how everybody is. Meanwhile, those who are interested in learning more about my experience as it progresses or who want to stay in touch, please PM or email me.

all the best,
Fiona
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Old 06-18-2008, 11:35 AM #2
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Fiona

I do believe this was entered too soon. Read it again. I don't post much anymore but never for the reasons you have stated which are open to question but because my own situation is too precarious to take the stress.

You have benefitted from this site and now you want all who share your opinions to leave and contact you personally thereby depriving any who could benefit in reading what you have to say from doing so.

Like I said read again.

With respect Thelma
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Old 06-18-2008, 12:10 PM #3
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Fiona , I think many on some of the other forums might be interested on how this works for you.
I'm thinking for many other conditions , not just PD..

May I copy this post to a few of the forums I think might be interested in this?
I'm thinking RSD, MS, actually most of the movement/pain syndromes, but don't want to spam the forums with it -- maybe just a copy on the General Health forum??

Would you please keep us updated over time as to how it is going for you??

There are many in the other forums that might like to hear of something "outside the box".
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Old 06-18-2008, 01:04 PM #4
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Yes, Jo, you may certainly post it on other forums - or an edited version if you wish.

Thelma, I really do appreciate your writing, and it may be true that it was sent too soon, but I will let it stand for now. It's not that I want people to leave the forum or anything like that. And I firmly believe that many people will be able to find their healing from PD in either forthcoming therapies or the ones that already exist even, and I begrudge no one their benefits there and indeed celebrate every one.

But for those of us who write, -well for me - it takes a lot of courage to share one's personal experience, and I know that there are many who are standing by and saying nothing but evaluating under their own agendas. Which is natural of course. But I guess I've reached my own vulnerability threshhold for myself and my personal path- which as I said, I am more than eager to share with anyone interested, but which I would rather not hold up for various kinds of scrutiny based on other priorities maybe. I didn't talk very much with anyone about my decision to go and do this thing, which was a big one for me, but of the few people I talked to - one person wanted me to meet and be scrutinized by his family and a PD nurse so that I could be judged by them for my before and after condition....which is something very personal to me, and which I didn't want to encourage because, as I said, I undertook this fully not expecting an overnight anything. And I didn't want my experience to be subjected to someone else's expectations and disappointments which were based on their own standards, which again might be essentially opposed to mine. Sometimes it's all we can do to keep ourselves going through what we are doing for ourselves.

Still, I want to let people know about this therapy and give those who are sincerely interested a chance to follow up with me on it. But I think what I mentioned about bias is something to think about - it's partially the reason we in the US dismiss so much valuable research and work going on around the world. It's not to attack those wonderful souls who do rightfully garner respect - god bless 'em - and not to silence voices contrary to my own. But I am getting tired and feeling the futility of going against the grain and the establishement, and feeling the cost of that to my own morale. Maybe I will rebound later. But I did want to let people know about this wonderful therapy.

Thank you again.
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Old 06-18-2008, 06:33 PM #5
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Fiona, I also have shared a lot of personal history. When I see how many posts I've made since I joined, it blows me away. You are one of the several who made we feel at home doing this, at the time. And god knows I needed it. I understand what you are saying completely. I know someone who was mis-diagnosed and her good friends with pd were happy for her but it wasn't the same. There was an awkwardness. Many are going through such hell to take on a different mind-set would be too much. I always had an innate feeling that something else was going on. Following the Mirapex take-down I changed my mind about everything.

Bonnie
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Old 06-19-2008, 05:50 PM #6
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Default your perspective

Fiona,

I didn't have time to think when you first posted this but now have and I want to thank you and reiterate that your perspective is needed here. You have resources and would be foolish not to use them. Then, others need to know. It' just that simple...that's how this place grows.

But there will never be total agreement. Then it would be more like a commercial. And there are people working hard through many channels and talents. It is becoming a functional community, pulling together and expertise through patient experience is the part they haven't quite gotten yet.

Attitude - now where do we get that online? There are no holds barred here except plagiarism or copyright laws. and some nasty words. i think we are in good shape there. if someone messes up they'll be slapped but it's all honest.

paula
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Old 06-21-2008, 12:23 PM #7
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SO I aologize, I had a bit of a meltdown for a while. I'm feeling a bit better. But my point still stands that it take a lot of guts to share these intense things that are happening with our bodies, and know that people all over the world are reading, judging, etc....it's not an easy thing, and it's not that I mind people having different opinions, really not. But sometimes their opinions about my personal choices about my body feel like - well, sometimes it's good to circle the wagons a bit when you're going through an intense healing process of your own.

Beyond that, there is much subtle and not so subtle social nuance and dynamic on this and any forum, and who responds, how they respond, who we think they are, is all at work, and it would be oblivious to say that it is just voices expressing opinions. Gender and ethnicity and many things play into the discussion - how could they not? And we are in the realm of discussing "science" and personal experience - the scientific world is very stratified by gender and cultural filters. So I felt a little weak for a bit. I think I'm back on track. I will consider the best way for me to share my implant experience and let you all know. Thanks for all the wonderful emails of support and notes above - you guys are terrific.
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Old 06-21-2008, 12:27 PM #8
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fiona, try and also remember about those who are reading, who can only do that. maybe their pd is so bad that they can't post. you offer an alternative and hope.

thank you for being so brave to share with the world.

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Old 06-21-2008, 02:31 PM #9
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Default Bottom line

We here are family or perhaps brothers and sisters in arms. Whatever the name, we are a new form of social unit that never existed until a decade ago. But here we are and we need each other. Sometimes a little, sometimes a lot.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 06-21-2008, 05:59 PM #10
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Amen (am i allowed to write that?) madelyn
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