Um, I seem to be getting better.

Thelma · 08-24-2010, 08:11 PM

So now that there is only one side of the fence to be on where will I go to see what is on the other side. Think i will go down by the river and look over there. I have been told you can see the other side there. Oh well folks someday they will cut the trees down and we will see all sides.............................someday......... .................someday soon Please

rd42 · 08-25-2010, 03:46 PM

Fiona,

Thanks for starting such an exciting thread. Are your symptoms getting better, or is your mind set now in a place were it can deal with them while not on the meds?

I have been diagnosed 5 times, the last doctor at Mayo said, "it doesn't quite seem like PD." but after all the numerous tests he ordered... three

... he decided that it was indeed young onset PD. A spiritual healer told me my symptoms are the expression of experiencing my parents divorce at age 12 and that many life times ago I was buried alive in an earth quake. Either way, how do I get some real relief?

It's encouraging to hear how long many of you have been persevering, I'm 5 years in and ohhhhhhhhhhhh this sucks. I'm living life by the second because I don't want to think any farther into the future.

Fiona, I look forward to hearing more, and I am genuinely thrilled for anyone that finds an exit door to this. (especially when they are saying, "over here, it's over here" )

Thanks,
Robert

Fiona · 08-25-2010, 06:26 PM

Hi Robert.

I'm halfway out the door. Keep in mind that I was dx'd 19 years ago, and have been on a lot of drugs for a long time. As one of my friends here said, people with just PD often have striking differences to their mien; people on the PD meds eventually all look alike. So for me just taking 50% less medications - and starting to feel better - better walking, sleep, digestion, longer functional periods - is great and very exciting, although I realize it will take me a long time to clear out and for my body to totally assimilate this, and right now still ups and downs, although not nearly so bad as when I took 50% more meds.

Plus this Psycho-bio-geneologie work has what they call a deprogramming phase where your brain readjusts to new patterns of thinking, a time in which you need a whole lot of rest, get swelling and edema, weight gain, need constant ice packs on your head and hot footbaths, go through a phase of intense urination, a sleepless and then a sleepful stage, cramps and all kinds of fun stuff that resolves - usually within a few months. Then an essential part of the resolution is a "healing project" - something that you realize you need to accomplish in the real world -very carefully designed and unique for each person.

I have identified this as my door. I will give a full report when I am through it all the way. I just wanted to let people know that at least for me, it's there, and I think it could be for other people, too. But it takes a lot of determination and commitment....so as I said, it's a brave new world. Zip up your parka.

rd42 · 08-25-2010, 07:30 PM

Thanks for the response! I'm happy to hear about your progress.

I am certainly interested in the "deprogramming". I am fully aware (I think) of how counter productive my thoughts are, mostly fear based, but so far I have only been able to not dwell on them as long. Getting rid of them has eluded me so far. I would love to have happy fun thoughts randomly come from the inner silence all on their own, instead of the other thoughts.

Robert

rosebud · 08-25-2010, 09:11 PM

It seems you have found a crack in the wall. Thank you for sharing. It reminds me of that little sunday school song about "This little light of mine" We all have added hope, and if you make it out of this dark place possibly more of us will too. I have doubted my diagnosis of PD off and on since the beginning, fifteen years ago, but I've learned a heck of a lot about life, love and myself along the way.

I read all seven pages of this thread this afternoon, then had to go take some medication and a nap. I was inspired, uplifted and overwhelmed by all the posts. I found many things that surprised me, and some that confirmed some of my own beliefs. I found thought provoking information and some of it made so much sense that I was surprised I had not thought to make the connections myself. But there is always more to learn. I've decided some time ago that even if I found my way out of this madness I'd suffer PTSD from having had the experience so the answer to the question "What the heck is PD anyway?" has to answer "What is the meaning of all this?" Victor Frankel said in his writings that man can live with anything if he can find meaning in it.

One of the first things Fiona says at the beginning of this thread is that there s a revolution coming in the field of medical thinking and mind-body awareness (sorry if not exactly as said...but too lazy to go back and see exactly how you said it Fiona). I read a lot and listen to documentary type programing on radio and TV and there is no question she is right. It's coming at us like a tsunami and the revelations are coming quick and with great force on old ways of thinking. The Medical professionals on the edge of what's being discovered can't even keep up. Where ten years ago there was skepticism about wether there really was a mind body connection, there is no doubt now... and we're part of the revolution! We're the first in line to experiment with it and find doorways previously hidden. So skeptics beware
or perhaps it would be more appropriate to say Skeptics prepare: change is coming. What you believe has great power.

I'm going to close this post to be sure my posting is working, but I have more to say ..... to be continued

reverett123 · 08-25-2010, 09:15 PM

We should not be surprised to find an assortment of doors out of this place. Nor should we be startled if there is just one. To me, the very fact that a determined, longtime PWP can roll back the clock even a little is the real story. Once one of us has done it, the mirror is shattered, so to speak. It will be like the guy at Sutter's Mill starting the Gold Rush when he saw a glint of yellow light.

rosebud · 08-25-2010, 09:59 PM

I saved the post I intended to post two days ago so I could repost it...even if it was manually retyped. Well Here's what I had to say:

It's been awhile since I last posted or even did any reading on this site. It's just by chance that I am using Max's computer and he uses this site as his opening page for the internet. So here I am reading this thread which caught my eye as I perused the subject lines. I have just reached my 15th anniversary of being dx'd with PD. I've worked to keep my med schedule simple, and questioning what I have and looking for the crack in the wall that will let a little light in has become a game I play with myself. Max plays the same game so we share our thoughts, believe there is a way out, but can't seem to find it. It is a conversation no-one else has much interest in, especially our doctors. We are expected to slowly go down the PD path and no one questions the strange changes we encounter in our bodies or has any interest in challenging a long standing diagnosis. Just accept the hand you've been dealt and hope for a breakthrough of some type.

This thread confirms so much of what I have read and also explains fragments of information that I know to be true. I need to read the whole thread from the beginning, but just from the posts I glanced at I find hope,not just for Fiona, but for all of us. Fiona is right when she says we are on the verge of radical change via mind body medicine. We are more than a pile of neurological connections, and our minds hold the keys to recovery. Thank you Fiona for your infusion of hope for the future. Now I need to get back to it and find my own crack in the wall. If I don't do the work, no-one else is going to do it for me.

I look forward to reading more about your journey. Information and inspiration are gold.

Thank you for this! Joy

pegleg · 08-25-2010, 10:30 PM

Hi, Joy - where have you been?

I must have failed to mark to follow-up my post in this thread. Sorry, Fiona, for taking so long to reply.

First - let me answer why your misdiagnosis scares me. To think that I (or any of us for that matter) might have been taking these brain-alteriing chemicals (dopamine replacement) for years, when in fact that is not what was needed should frighten us all.

I hope to start a t hread on a theory I h ave about this.

Secondly, it's a commonly known fact that as we age we lose neurons, and people deficient in dopamine have a loss of neurons. Scientists determined from autopsies and brain scans that there is about a 75-80% neuron loss before we get symptomatic (just do a google search or go to one of the orgs and read the literature.) At first, they thought the brain did not have plasticity; i.e. that the neurons lost were gone forever, but that has been shown to be incorrect. We just do not know why this happens. Pretty important detail missing, isn't it?

Here's a company making some headway with a test for Parkinson's:

Impax Pharmaceuticals finished enrolling patients in a late-stage test of a drug aimed at Parkinson’s disease.

The Hayward company expects results from the test of the drug IPX066 in the first half of next year.

This is a 22-week, Phase III trial and is one of two tests of the drug, which is meant to increase and sustain effective blood levels of levodopa, which improves the management of symptoms of Parkinson’s.

Impax Pharmaceuticals is the branded drug division of Impax Laboratories Inc. (NASDAQ: IPXL).
Read more: Impax fills up Parkinson’s disease test - San Francisco Business Times

Let's see, what else did you ask? Oh - about the raccoon eyes! A Chinese pug can be solid black or fawn. The fawn colored pug has black ears and sort of looks like he has a mask - thus, the nickname "Black-masked bandit." Oh well, that part wasn’t important.

I am glad you are feeling well - I do or HAVE, but had a spill at the mall when taking one of the grandkids to th e bathroom. I had back pain already, and now my lower back is bruised. Hurts, so I stay off more than on lately.

Peggy

west coast bebe · 08-26-2010, 03:27 AM

I can agree with you and would like to try alternatives myself. my son owns an organic food company, BEON and Essential Living Foods that sells Camu, Camu.

Quote:

Originally Posted by Fiona

Hi People -
SO.... I'm not quite ready to talk fully about what I'm doing yet. I want to be a little further along before giving full details. But I wanted to give you the sense of possibility coming. There is a new medical age in the process of dawning and it's going to change a lot of things. This is rad stuff. It involves understanding how stress, intergenerational trauma, systems of belief, placebo response, the meaning of each person's disease to themselves, questioning many of the base medical assumptions that we've been operating under (hello?? Lou Gehrig?), challenging pharmaceutical - well, slavery....

It involves understanding what one of my friends (hi RM!) calls the inherent terrorism that is inflicted in receiving a diagnosis like PD, with all its nasty "stages" and horrible expectations loaded onto us and our families, the depressing absolutism of prognosis that we are immediately labeled with - how could anyone recover with this kind of identity of hopelessness?

Lest you think Parkinson's dementia has finally set in for this citizen - well, it hasn't. But a lot is changing for me.... ok, so this summer I went to Europe and was re-evaluated, with the conclusion that I don't have PD and never did. I don't want to discuss this fully yet, BUT... remembering that I was diagnosed with PD 19 years ago, that almost all this time I have been treated by top NYC neuros - that I have been on a lot of meds for 10 - 15 years, so no matter how much I don't have PD, there is the matter of that secondary PD caused by our friends the drugs. What I'm doing doesn't involve new drugs, surgery, or anything like that. It does involve a whole new mindset, some herbs we already know about (mucuna, curcumin, camu camu...), some homeopathic medicines, probably the fact that I already had the permanent acupuncture ear implants two years ago, craniosacral therapy, and most of all thinking about the brain and my experience in a whole new way....

Today I was looking at my bottle of Stalevo 75 because it was time for my monthly refill. I used to take six of those suckers every day (like back in May of this year, and since 2005), along with even more than that of Sinemet, Amantadine, etc. The July-August bottle of Stalevo is still almost full. I have been taking one Stalevo daily. Today I had virtually no ""off" periods - drove my mom on two extended shopping trips, reorganized the basement, went swimming - no dyskinesia - I feel calm, my body feels quiet, strong, and just good....I have reduced my overall medication load by about 50% in the last eight weeks. The doctor's office just called with my latest blood work for my underactive thyroid (nine years of pills for that). It seems that I need to reduce that medication as well.

There have been and are many ups and downs, and I still have a long, long way to go. But I am walking out of this PD thing, step by step, for good, calling it quits and going home - well, to a new version of my life.

Whether it's all because I was misdiagnosed originally - my US doctors never even would consider my requests to rethink the diagnosis lo these 20 years, said there was no way they were wrong about me. But I think many of us are actually misdiagnosed - and even for those who do have what we recognize as classical (?) PD, I think there are a lot of very different ways to think about it. And the fact that nothing is set in stone.....How could it be?

I'm being vague because as I said, I am not ready to totally spill the beans for a while yet. But I care so much about all my dear friends here, and I just wanted to say hang on, hold on, keep the faith. Don't give up now because there are better days coming.

Love to you all. And more soon....
Fiona

lindylanka · 08-26-2010, 05:48 AM

I would say that there are several strands to this rolling back of old thinking, to reveal a new and rather brighter future for treatments and for people.

Fiona's experiences, and willingness to go for what she feels is the right way for her is one of them, and there are others too, doing things in their own way, and not giving in to the inevitability of the dx we are lumbered with.

So hope and finding a personal doorway out of this is one strand.

Another is the amazing work being done with exercise, which almost proves the fallacy of the third point...... As a non-expert on this I shan't say more, but am prepared to be amazed by the fantastic results that people are having.

And then there is this strand.........

Peg describes the orthodox position well in these words:

Secondly, it's a commonly known fact that as we age we lose neurons, and people deficient in dopamine have a loss of neurons. Scientists determined from autopsies and brain scans that there is about a 75-80% neuron loss before we get symptomatic (just do a google search or go to one of the orgs and read the literature.) At first, they thought the brain did not have plasticity; i.e. that the neurons lost were gone forever, but that has been shown to be incorrect. We just do not know why this happens. Pretty important detail missing, isn't it?

It IS an important detail missing.......

She describes the uncertainty about neuron loss - all the treatments are based on this theory of Parkinson's, that the neurons are dead and gone, and ain't coming back unless something extraordinary and very expensive helps them regenerate.

But then you look at all of nature, and say well there is no evidence at all that ANYTHING that dies is brought to life, the closest we come to that is religion not science. So the cells that are 'regenerated' are not regenerated at all, but newly GENERATED, which is something different.

And if you go back to those people on bikes, doing extraordinary things and pushing the 'inevitable' away for years, you have to challenge, as many people on this forum, patients not scientists, have done, the notion that those neurons are dead.......... And if they are not dead, simply disabled and dysfunctional then that changes everything, and the whole theory of Parkinson's just crumbles. And that is not to discount the awful reality of Parkinson's at all, or the huge losses that patients, families and carers have lived and witnessed.

I believe the gates are there, that they will be many, and that even if I am not able to personally step completely through, I will at least get a peep through at a better future.

For now I am going to indulge in another kind of gate, being creative, that can also bring a welcome remission from PD. In the words of a fellow forumican, When I am absorbed in doing the things I love to do it is as if I no longer have Parkinsons, I am symptom free.

Hope, love, joy in life - they are part of what it is to be human, why discount them on the road to helping people back to health.......

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