permanent acupuncture implants and my story

[Fiona]

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

[Thelma]

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

[Jo*mar]

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 :p-- 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".

[Fiona]

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.

[smithclayriley]

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

[paula_w]

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

[Fiona]

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.

[Curious]

:hug: 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.

:hug:

[reverett123]

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.

[olsen]

Amen (am i allowed to write that?) madelyn

[paula_w]

Ten years ago - you might have been run off madelyn. Did you all read that Doc John's site was voted one of the top 50 by TIme.com? Is that right curious?

paula
wanted to add - Fiona what you are doing is the same as everyone else who is probably a good way down the yellow brick road. Trying to escape the wicked witch of the west.

I'm not a dancer in New York, but i've seen the Wizard of Oz. We all need different ingredients..like brain, heart, courage, and on and on. There is not enough time for everyone to learn everything. Medical science and govt.......forget it! But I tangle with them in my mind all the time and try to change something. It's happening right now. Legislatively,and..going to repeat this until Dr. Stacy sees it and takes it for the vote or confidence that it is] Stacy from the researcher angle asked for our help and to give them "courage." That word really stands out -

i still recommend you see these two well known researchers from opposing sides of the GDNF table speak openly about it as well as all the other stuff they are doing in the series of round tables? called something else? - another will go up shortly.

www.pdf.org (http://www.pdf.org)


paula

[CTenaLouise]

my dear one -

considering this illness is on an individual basis - not everyone has the same
PD,
therefore -
I believe that what you do -will improve your symptoms -
I know accuppressure and accupunture - is based on chinese medicine,
and they use it instead of drugged anesthesia , they would not do many things -the Western Doctors do here -
alternative medicine -
http://www.altmd.com/blogs/History-of-Acupuncture-in-America
anesthia
http://www.answers.com/anethesia?cat=health

as I have lived in Kansas and I know there are many wizards in the land of OZ/
and in The Emerald City you would be the LION -because you have -great strength and much courage...

Take care my pretty! lol ;)

love &

[slowmo]

Fiona,

I'm in my 10th year with PD (diagnosed at age 47)
Did you have acupuncture treatment first which led you to this procedure? Is there a way my acupuncturist can find those spots to see if there is any response?

Slowmo

[Fiona]

Yes, Paula, thanks - I am very interested in the GDNF thing. I'll never forget seeing my doctor literally weep and say "I saw those videotapes - that was NO placebo...."

Slomo- yes, I have received acupuncture at various points (pardon me, I had to!) during my life, and found it very helpful for things especially like musuclar injury somehow...Before I went to Spain for the permanent implants an acupuncturist tried several temporary spots in my ears, and sometimes they seemed to help, but hard to say exactly. Your acupuncturist could go to Dr. Werth's site -www.werththerapie.com and see if that is helpful at all - I'm not really a pro on that one. My local guy was doing three points at a time, which would fall out after a couple of days naturally. I have now 128 permanent points!

I really believe in the priniciples of acupuncture. I think it is a system with paradigms that are contrary to our Western medical ones, but brillantly conceived, and I think we are still trying to catch up with it. Our conception of the nervous system is about as close as we get to that. I decided to get the implants because the thing with acupuncture since it's often about balancing a whole field of energies within you, it takes time, and in my city lotsa money, which I don't begrudge the doctors but sometimes it's hard to know when you are getting somewhere or not. So how long do you commit to any one expensive sort of therapy, only one of which I can afford at a time. Besides that, I had never heard any acupuncturist say with confidence that they could definitely help a PD person specifically with PD and lowering the medication. Now I know that often they don't really think of it quite like that.
I think that in any case, acupuncture would be very valuable for maintaining or strengthening your overall health.

The reason I decided on Dr. Werth's therapy is that he is unique in being a neurologist and an acupuncturist trained in China, and saying with authority that he could definitely help people with PD, and has a whole center focused specifically on that. Plus the records he has through DAT scans are really impressive evidence. Besides that, I guess I was attracted to the idea that it's a chunk of money you spend once, a procedure you get once, and then you let it do its thing over time, but you don't have to be continually asking yourself, well, should I be going three times a week to see a result, or how many months should it take to see an effect. This way, it's done, and now I focus on other things, and this helps as it may...

[ernvale]

Hi Fiona.
Please forgive me if I am not doing this right,I am new to the forum and not exactly fluent in these matters.
My name is Valerie and I am a long term sufferer of Parkinsons.
I too am thinking of going to spain for the implants and would love to hear as much as you are able to tell me about your opinion's results and any other information you can give me regarding the procedure.We (my friend and I) have read all we can find of your posts and are very thankful that you have been so forthcoming.
Yes I too will be going a.s.a.p to see what can be done and so would love to hear from you.
Is it at all possible for us to communicate via e-mail?
Not that we mind this method of communication.It would be lovely to be able to talk on a personal basis. :)
Your messages have brought a new light into our vision.
Thanking you most sincerely....Valerie.

[chasmo]

[QUOTE=paula_w;306565]Ten years ago - you might have been run off madelyn. Did you all read that Doc John's site was voted one of the top 50 by TIme.com? Is that right curious[unquote]


its ashame that MGH did not make the list. Thats what happens when one makes poor moderator choices, which is my way of saying "atta girls" to our moderators. You guys are the BEST!!

Charlie

[scrumptious]

fiona,
i wrote to you but can't figure out how to get thru the hoops involved on this site. i don't know how to remove links, etc. just to get thru to you. heaven help the computer novices like me! hopefully you will keep us abreast of your improvements....we are in correspondence with werth's office and are waiting to learn some personal testimonies as well as the approximate cost. i just posted a list of all the alternative things we have done - some good, some not great - but since we have done a lot i thought people might like to know of our experiences and evaluations.
hope to hear from you soon.