[reverett123]

Working on my blog and though this might be an interesting thread. The subject is not simply what has met the standards of research but also those things that are obvious down here on the sea floor. Add and critique if you will.

I. What Do We Know?

1. PD is widely distributed geographically and, with rare exceptions, is not found in a pattern suggesting solely environmental origins. If a factory is belching out a carcinogen, we expect a cluster of cases downwind of the factory. Such horizontal clustering of PD has not been observed in homogeneous populations. While environmental toxins may influence the matter it is unlikely that they have a dominant role.
2. In a similar manner, PD does not exhibit vertical clustering within the levels of a stratified society. The child playing in the gutter seems no more likely to develop PD than the one playing in the penthouse. While social status may influence the matter it is unlikely to be the dominant factor.
3. PD does exhibit clustering among some occupational groups, however. Farmers and welders, for example.
4. PD also is generally more common in industrialized countries than in non-industrialized countries.
5. Family clusters are rare which casts doubt on solely genetic origins.
6. Particular personality traits seem shared more than statistically likely.
7. An exaggerated stress response is so common as to be almost universal in the later stages.
8. The speed of degeneration and the nature of symptoms is highly variable among individuals.
9. A dramatic worsening of symptoms is often associated with infections.
10. A similar response to acute stressors is often incapacitating.
11. Lifetime stress loads are remarkably high among younger PWP.
12. Acute trauma often precedes diagnosis.
13. Acute infection often precedes diagnosis.

[just_me_77]

Rick, kinda tired at the moment so going to bed. I will ponder your observations for further comment later on.

Mike

[Conductor71]

No critique. I just want to reiterate that stress is a key player. Animal studies now show that stress can result in permanent worsening of symptoms by accelerating neuronal loss. Clearly, how we handle stress is key in the pathology, this in turn, would seem to link PD to our endocrine system.

And doctors tell us when we're diagnosed in our 30's that we can continue to live "normally" for quite some time...considering the amount of stress we encounter every day from commuting to work, to work itself, parenting, and any other personal or relationship issues we may struggle with, I'd say that is quite an overly optimistic assertion devoid of any connection with reality. In fact, it borders on potentially being harmful to tell a patient this.

I'd also say that the few people who post here or who have posted who are doing well, lowering traditional meds or off them, have traveled for alternative treatments and seem to have dedicated themselves full-time to feeling better. They have shown positive results. I think this tells us a couple of things. That it is key to reduce or eliminate stressors as much as possible eg. toxic relationships, toxic work environments, etc. Better, that there seems to be room for improvement if we work at it.

This is easier to do if one is financially independent or retired with a secure income, but it leaves out a lot of people with PD. I think this is one of the most neglected aspects of research and treatment. Yes, we need better drugs, but wouldn't it be wonderful if there were professionals who could help us improve naturally through individualized "alternative" treatment plans? It should be a basic course of treatment for all of us that is paid by insurance, not something that replaces traditional drug therapy, but a complement to it. Even just educating patients about stress reduction would be a huge improvement in our care.

Laura

[swept]

We are experts,every day is a clinical trial,we set goals achieve outcomes.We have a named condition in common,the cause is locked inside each of us,we are all different,there must be we know a genetic influence,but what triggers or poisons us.Question always its the only way to be heard.Many causes so perhaps well inevitable I think,that there wont be a single solution.Complex yes,so the more we share the more we learn .Its not just a cure its living well with PD sharing educating,stumble on ,and stumble upon.We are at a crossroads I feel in research and medical management of this condition, more importantly we are being listened to and participating,more than ever before.dont lets waste it.

[wendy s]

Laura, I really like your comment that there is room for improvement if we work at it. My manager commented recently that it's nice to see me doing so well, she's glad I have the will and the knowledge to do everything I do to stay well. Up until that comment I was thinking that I was just lucky, but I do work at it - food, exercise, sleep, lower stress. Maybe it does matter a lot.

[Fiona]

Originally Posted by Conductor71

And doctors tell us when we're diagnosed in our 30's that we can continue to live "normally" for quite some time...considering the amount of stress we encounter every day from commuting to work, to work itself, parenting, and any other personal or relationship issues we may struggle with, I'd say that is quite an overly optimistic assertion devoid of any connection with reality. In fact, it borders on potentially being harmful to tell a patient this.

I'd also say that the few people who post here or who have posted who are doing well, lowering traditional meds or off them, have traveled for alternative treatments and seem to have dedicated themselves full-time to feeling better. They have shown positive results. I think this tells us a couple of things. That it is key to reduce or eliminate stressors as much as possible eg. toxic relationships, toxic work environments, etc.

H Laura.

I just wanted to throw my two pesos into the ring, and ask you if you think it would have been better for your neuro to tell you upon diagnosis that you might as well pack it in right now, that there would be no hope for any kind of positive daily activity for you post-dx or that it would end very soon. How would that have helped you?

This is pretty much what happened to me, and I walked out of the office at age 34, with my profesional dance career finally just starting to blossom, and he made me think I would be in a wheelchair within five years, and never mentioned that many people do relatively well for 15 years or so... Fortunately I paid no attention ( well, not true, I paid attention, just didn't let it stop me) and went ahead with some kind of realization of my life's work. My guess is that you are concerned with getting empathy and understanding of the struggles involved, which is totally understandable. Because I have found that if people think it's easy or normal or routine for me, then they expect things from me that I can't do. SO I have often found myself in a position of "awfulizing' my situation because otherwise people are not going to realize the extent of my effort to achieve anything.

As to traveling around the world to pursue treatments - yes, I have been fortunate to hook a few of those up -although may I mention the third world seems to be infinitely cheaper than the first world, which has made many things possible if one chooses carefully. And I have been so lucky to make friends in those places, who have helped me considerably in emotional support...But I am not financially independent nor well to do, other than my extremely modest disability pension from the DSS and occasional help from friends or parents - which I know so many people don't even have that, so I do appreciate it. But just so you know, I'm no finanicially carefree upper crustman, and the main growth has come from being dedicated to searching for ideas and answers and concepts that make sense to me.

In terms of letting go of toxic work environments - I would give anything now to have my old jobs back - I miss my stuents and the dancers in my company so much -a sense of purpose and being needed in life feels so essential to my healng process, and its lack in my life is a huge barrier. So enjoy all your assets - your children if you have them, the ways that you are able to stay functional and contribute to life. It might be more than a blessing than you realize. Plus the positive doctor who wanted you to trust and believe in the strength of your body to deal with things - isn't that better than being sat down and shown videos of late-stage PWP, presented as "your near future"?

SOrry, Rick, a little OT. I'll make it up to ya.

[Conductor71]

Originally Posted by Fiona

H Laura.
As to traveling around the world to pursue treatments - yes, I have been fortunate to hook a few of those up -although may I mention the third world seems to be infinitely cheaper than the first world, which has made many things possible if one chooses carefully. And I have been so lucky to make friends in those places, who have helped me considerably in emotional support...But I am not financially independent nor well to do, other than my extremely modest disability pension from the DSS and occasional help from friends or parents - which I know so many people don't even have that, so I do appreciate it. But just so you know, I'm no finanicially carefree upper crustman, and the main growth has come from being dedicated to searching for ideas and answers and concepts that make sense to me.

In terms of letting go of toxic work environments - I would give anything now to have my old jobs back - I miss my stuents and the dancers in my company so much -a sense of purpose and being needed in life feels so essential to my healng process, and its lack in my life is a huge barrier. So enjoy all your assets - your children if you have them, the ways that you are able to stay functional and contribute to life. It might be more than a blessing than you realize. Plus the positive doctor who wanted you to trust and believe in the strength of your body to deal with things - isn't that better than being sat down and shown videos of late-stage PWP, presented as "your near future"?

SOrry, Rick, a little OT. I'll make it up to ya.

Fiona,

I so did not mean to offend with the finance comments. In retrospect, I was afraid that might happen. I am just thinking that travel aside; it is in fact a full time endeavor to stay ahead of the curve with this condition. We can't entrust our well-being over to doctors; the research alone is time consuming not to mention the time and energy we give to even finding doctors and resources. Then factor in how playing around with meds can leave you incapacitated and already you are expending an inordinate amount of time on your health.

I was actually thinking more of Max's posts on switching over to mucuna and his yoga regime; his daily routine sounds intense. He is doing so much better, but honestly, it sounds like full time work. It's worth it, but I am just saying that we aren't all in a position to do so. I think of YO men who must still provide for their families. Me, I am essentially a single mom. Since we're all at different places in life in terms of finances and free time, wouldn't it be great if we could take you and Max as role models of a sort and have the whole idea of healing ourselves adapted as a standard in treatment that we could expect and that our insurance companies would support. This way we might all benefit at whatever amount of time or energy we can put into it. I meant this as a compliment to you both. Your success stories serve as an inspiration and proof that it can be done.

I'd say that you both have shown improvement beyond standard medical "best practice" of DBS. Honestly, in reading Max's story and in your recent experience, wouldn't it cost less for an insurance company to support a program of natural healing even involving travel for alternative treatments than it would for DBS and all its upkeep? Certainly the natural approach is more empowering for the patient and looks like it may have very similar results if were to compare using the UPDRS. In all seriousness, I would love to see something like this in clinical trial.

On a more personal note...maybe I sound bitter because I have spent quite a bit on lawyers this year just trying to retain my livelihood; I now face losing my home. I still teach...barely. My PD worsened due to pregnancy, and I don't have the stamina to do it full time anymore. I lost this in the course of one year. After my pregnancy, I was thrilled to even be able to teach part-time. My district is known for targeting employees with high insurance premiums and "treating them differently". I also am not vested in the state retirement system and because I am now half time I have no disability insurance. These past two years have been a rude awakening. Could I look for other work? Likely, I'll have to but then face the pressure of "hiding it" when frankly, I don't think I really can anymore. In other words, finance is weighing heavily on me these days, so this may be why I came across as critical when that was not my intention at all.

This is also why I am a bit bitter with a doctor giving me an overly sanguine look at my future with PD; she in fact also told me that pregnancy would in no way worsen my condition. While I didn't have a doctor telling me I would be competing in triathalons or in a wheelchair (can't believe that is what you were told- yeesh), I had one who needed to be willing to conduct a literature search or at least admit she did not have an answer for me.

Anyway, I am long-winded as usual, but essentially saying that I think we need to revolutionize the way this is treated by looking at what we can do to help ourselves make the most of what little dopamine we have left instead of merely trying to synthetically replace it every few hours.

[Bob Dawson]

I know we have to have something that is not just passively swallowing the pills. I know we need some kind of mind-body stuff - all reports show benefit of dance, exercise, Continuum or ADTA and lots of names I forget. It ain't just shakey hands and shuffling feet.

[Floridagal]

Yesterday morning was remarkable for me. I woke up about 7:30am, which is quite late for me. I was up late the night before helping clean up after a wedding. Now I was very surprised that I could actually stay awake that late & be useful when normally I'd be shuffling about and unable to move well let alone help.the next morning when I woke up I did notice some stiffness in my left hand/fingers. Usually there is stiffness in both & they hurt until I move them some. I got out of bed with very little difficulty. I had no tremor at all. It was like 3+ years ago. I was absolutely amazed. The fact that I was "dancing" with my little granddaughter, my husband, and brother in law, etc, was not my usual behavior. I got exhausted several times & had to sit down, but then, I was having so much FUN I'd get up again, even though I tripped twice over the edge of the dance floor and came very close to falling until I grabbed my husbands shirt. I just kept it up, and what was really different was I no longer cared how I looked out there to others, and just figured I'd have fun. I've always tried to keep active and walk, bike, work out. And we do know it is beneficial to PD. raises dopamine, I guess. What I think now though is not only is exercise important, but FUN is just as important. standing on a treadmill was never really fun but I knew exercise helps. So I am going to do more things that I find fun, like sloshing in the pool when I can and walking on the beach to find the best spot where the fish are biting. There has to be a purpose to the exercise other than "good for me" Fun must raise my dopamine also. I seem to learn something every day about this disease. Anyway, PD aside, life's too short to not have fun! Thankyou for listening. Be encouraged, I definitely am today. FG

[just_me_77]

Rick,

I agree with your observations in all but one area:

Quote: "While environmental toxins may influence the matter it is unlikely that they have a dominant role."

It is my opinion that the many chemicals we are exposed to in our environment result in the cumulative effects of Petrochemicals that are increasingly ever present could be a direct link to PD. Our grandparents either got their milk straight from the cow or delivered to the home in glass bottles or wax-coated paper cartons, not <1> PETE, <2> HDPE all the way up to <5> PP. Highly acidic Coca-Cola was also sold only in reusable glass bottles (who knows how much plastic we absorb with each sip?). My prescription medications have been filled in the <5> PP plastic bottles until just this year. Now to promote recycling they have changed to the <1> PETE that is easier to reuse economically.

How about all the so-called 'safe' herbicides, pesticides etc. that are sprayed on all of our genetically engineered fruits, meats and vegetables; many of which are imported from other countries with no FDA supervision as to what or how much of something is present in our food (not to mention they end up polluting the water supply)? World War II was known for the "Victory Gardens" grown in your own yard and those seeds were like God designed them to be for our proper nutrition without MAD Scientists fooling around to make them "Better". I could go on and on and bore you to tears: I am ready to cry now just thinking back on what I said.

Please rethink the link toxins could play in PD.

Mike