I too found your summation of Levodopa's "typical" path to be very accurate. And like Cate, at age 46 with over 10 years of using Levodopa, life is still very good despite the hard, fast on/off's and dyskinesia I now experience.

Several months ago, my MDS told me to start learning all I can about DBS as she figures it's about two years out for me. That came as a total shock since I see DBS as kind of being our last hope of help! At only 2-2.5 on the Yahr/Hohn scale, I thought DBS was an option I would need, but not until the far, distant future!

In hindsight, would I have done things differently, started Levodopa treatment later? No, I would have followed pretty much the same path because I wanted to be the best I could be for my young sons, my husband, and of course, for myself too. I've often joined others in recommending that levodopa treatment be started whenever your life is being negatively impacted by PD symptoms. If you can't enjoy life and do things you want to do, why struggle when Sinemet can make you "normal" again?

Whether or not you begin taking Levodopa, the disease process that is PD continues, unabated. It is a progressive neurological disease for which there currently is no cure. So, why not be all you can be NOW and in the best of Scarlett O'Hara style, worry about future problems tomorrow?

DBS may be in my near future, but I'm looking past it down the road now. My hopes are that a cure for PD or treatment resembling a cure will come along in time to help me, in time to help us all. By carefully selecting which politicians I vote for and by participating in PD research and fundraising, I'm doing what I can to make it happen. And I'm only doing a minute fraction of what other PWP's are doing! We all need to join the fight to whatever extent we can.

It seems there are some who feel that early DBS provides longer[?] better[?] benefits. If we wait till we are too old, it won't help as much. I can see how you would be surprised at your neuro's comment. Mine brought it up years ago and I thought, "no way".

Boann, I waited 7 years after diagnosis and 10 years after the first appearance of symptoms to start sinemet. I've been on it for 7 years and can get very dyskinetic. But i just recently changed my dosage and am back to working with 25/100s and have found that I still have some control over getting dyskinetic.

So yes you have it right - life becomes about operating your machine's movements, which increasingly includes the mental fog that reduces you to some bumbling vocalizations that used to pass for speech and thought early in the morning.

paula

Thanks to everyone again for responding. I hope it is clear that I respect any and everyone's choices about how to manage this disease. Everyone has different priorities and demands being made of them as well as different rates of progression and different constellations of symptoms, and I would never criticize anyone for the way they choose to manage their symptoms and their lives.

But my first major concern is that I am not convinced that doctors treating PWP provide all the relevant information. Are young onset always informed of their greater vulnerability to levodopa's deficits, for example? I wasn't - I discovered that on my own. without that knowledge, I could not have made an informed decision had sinemet been proposed to me.

My second concern is that while levodopa may be better than nothing, it is far from good enough. In my opinion, a drug that not only loses efficacy but causes in most people sooner or later [frequently debilitating] side effects that ultimately require brain surgery to fix - that drug is not a long-term solution.

And yet, here we are, 36 precious years and god knows how much money down the line, with nothing better – but it is deeper than that – we don’t just not have something better, this drug that is better than nothing is no longer referred to as having “toxic effects” like it was in the beginning – on the contrary, some genius marketing has secured the moniker and honored position of "the gold standard” for it.

This is a drug that causes a side effect that, when it occurs in the absence of a causal drug, is evidence of neurological disease (Huntington's chorea), and it is universally referred to as “the gold standard?”

There is something radically wrong with that picture.

I spoke to a neuroscientist once – did a little rant about the shortcomings of levodopa, dyskinesias in particular – and he said “but dyskinesias are sort of expected.”

There was a long pause while I quietly swallowed what I really wanted to say, after which I told him he was more than welcome to expect them in his life – I had zero expectation of them in mine.

I don’t believe that his perspective was unique. Somehow (and I do have some thoughts on how), these shortcomings have made the transition from being considered toxic effects to being considered pesky, and either inevitable, or an inevitable risk – I do not accept that inevitability.

I don’t know how I am going to effect change… yet. But when I do, success will be giving PWP voice to which the research machine is compelled to listen.

Personally, i think they should sponsor a trip to wherever Fiona's been and see how it compares to physical therapy. Anyone want to fund it? lol i think we are all focused and interacting now.....whatever works. You have to split up to cover as much as you can....guarantee you I will become an instant fan of whatever works.

paula

Paula, I searched the posts to figure out what you meant above about Fiona (formerly known as RAO). It seems that after a healing trip of some sort in South America, she's able to dance again. Wow! That's so great! For me it would be like the old joke:

"Doctor, will I be able to play the piano after this surgery?"

"Of course you will!"

"Great! I never could play it before!"

I never have been a great dancer, but I do love it so maybe I can do whatever Fiona's been doing!

Your post, Paula, reminded me of a situation with a local woman who for many years has been fighting a valiant, yet apparently losing, battle with melanoma that has spread to her brain, etc. The community has been done a variety of fundraisers for her and raised enough money to send her to Lourdes to bathe in the miraculous waters there. I've heard she's feeling a lot better after her trip to Lourdes. Is she cured? I don't know. Is she feeling better physically or is it a mental thing? I don't know. All I know is that she believed in the miracles to be found at Lourdes and she feels better.

There are so many ways to heal beyond our typical Western medicine methods. I'm really glad that many PWP's are pushing to find a solution to PD in their own ways and that they're sharing their successes with us!

This thread seemed a good spot for this link.

http://www.wipo.int/pctdb/en/wo.jsp?KEY=04/39385.040701

The "preferred embodiment" language cracks me up.

Do you think they stand a chance of getting the patent, Godfather?

Boann, you probably know that mucuna has been used to treat pd in India for 5,000+ years in India. I use it as my sole pd med. While it's from a natural plant source, I still consider it a drug - and I experience nasty "withdrawal" symptoms when it wears off - every time. But I think (hope) it MUST be better than the synthetic stuff. I am still looking for the CURE.

Paula, I like your idea of PT vs a trip to the Amazon. I'd take either option - or both if possible. Vamanos! Ibby

Not unless they bribe the patents examiners.

The claims are so broad and unoriginal. Mucuna Pruriens has been used for Parkinson's Disease for thousands of years.