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Topic *caution*musing rant*might offend some* Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2012.05.12 16:03
I haven't posted the likes of a bold post such as this before however I feel it maybe time to caution my fellow patients and caregivers to go slow.

****please do not feel that I am singling out anyone or any treatment options here, that is not my intention****

We, all look for something, anything to help ease symptoms and aid quality of life. In doing this seeking we visit different web sites (I was looking at one which had patients believing they shouldn't be taking their med's because they were being "hooked" on dopamine!) If you stop your medicine you'll soon exhibit a baseline of the underlying disease and it won't be pretty.

Zinc, Mucuna, Amino Acids and the lists go on and on. All claiming benefits for this or that aspect of Our disease. Diet changes, everything to help Us. And then sadly weeks or months later we're having all kinds of problems.

*****I hate being the one to always urge caution! I hate seemingly to always shoot down posts offering hope! I hate this disease! I hate the helplessness of patient and caregiver in trying to control this disease! I hate thinking when I post caution that those reading it will say Lohengr1n's such a downer, He always has negative comments I wish he'd stop posting or go somewhere else he doesn't belong here this is a caregiver forum! But what I hate more is needless suffering!******

When we try different options we have to remember We (patients) are tuned into our medicine for best results as we are right now. When we change things our medicine must be adjusted to fit into the changes made. I'll try to explain it a different way instead of Us and our medicines. You've got your car out in the garage or driveway. Now someone say's you know if you reduce the volume of gas going into the engine you'll get better gas mileage! You don't grab a screwdriver, pop the hood and start turning screws to cut the fuel yourself do you? If you do and slow it down without adjusting timing and spark the fuel won't be enough to ignite and run your engine and you'll be paying some mechanic lots of money to fix your mess up. (you'd certainly protest if your Parkinson's other half tried to do it).

Yet we go out trying this and that "new treatment" or "cure the drug companies don't want you to know" and pay the price. We pay it with suffering and wondering where that came from. Not looking back but jumping on the next bandwagon.

I've come to believe that the term "Medical ethic's" is like "Military intelligence" just another oxymoron. Maybe it is just the way of the internet but it seems many sell their degree to the highest bidder to push this treatment or supplement, medicine or book. They all assure us they're not in it for the money they have a nobler aim of making us better. They for the most part prey on our hurt, sorrow and sense of helplessness knowing we will like act like Charlie Brown trusting Lucy to hold the football once again for him, we will trust and try another "trick" to beat Parkinson's Disease.

We who wouldn't try tinkering with our cars motor willingly tinker with our medicines and supplements, diets and such, like demented alchemists trying to turn lead into gold. We run helter skelter, to and fro, from one "new breakthrough" to another. I've said many times these "new breakthroughs" run in cycles, they do, sadly as We are living longer with Parkinson's many will see what I mean. Biking as an example is again in the news there was a blurb the other day about biking prolonging onset and managing symptoms of Parkinson's. The newscaster ended with how about that folks you can now control the progression of and symptoms of Parkinson's Disease with biking! Yes exercise is great for you but I haven't seen any correlation between biking and re growing dopamine producing cells.

In the end we should educate ourselves of the disease and if it doesn't stop the dying off of cells, promote re growth then be very skeptical of it. Otherwise to run from one snake oil salesman to the next is foolish and how can we expect a cure and to be taken seriously if we're not acting serious any faith healer will tell you when asked why it didn't work? Your faith wasn't strong come the snake oil didn't work? Well you didn't take this one you tried the other one and this one is the one that works go ahead try it and see! They'll tell you what you want to hear for a buck or two. Then tell you they aren't in it for the money. They say They're only trying to help and heal someone they have no interest in (except to earn a living). Such a wonderful world we live in and how nice they are...but...hey wait a minute.....last I knew We got kicked out of Eden! Color me skeptical.

By karolinakitty On 2012.05.12 17:01
How right you are!!!!!!

It saddens me when I see sites where people say...don't take your meds.....while I hate Requip/Mirapex and what it did to my guy.....I would never force the thought someone else should get off of it.... I know it helps some...Me...i want it off the market and siad my peace about it...but would not expect anyone else to go off of it....

I love natural remedies...but guess what... in all the tom-foolery, all the diets..there is no cure and to this point no direct treatment naturally...I've read them, I had my herbalist look into them...still .. nothing...

Yet people are out there...there is a free market for snake-oil...only to have hope demolished and shattered..

Not just last year when at a Florida market we were approached by such a salesman selling his bracelet..telling us how he would never have symptoms again if he wore the bracelet....gave his speech on how this famous athlete wore won(free), this famous person wore won(free) my guy said I'll wear one for free too.. but oh no ours would have been like $400.....They only want our dime

I love my research...I love looking to see what's next, I spend hours in webinars... I want to learn...but I also know the reality...i don't jump from treatment to treatment..just thought to thought idea to idea...

Just this week listened to a webinar on Gene Therapy.... it's pluses and minuses ...shoot in all reality we won't see nothing out of this here in the states for another 6 - 10 years....if you had DBS ..if you had a TBI..if you have any "mental disease " or history of mental disease, any exposure to certain things like agent orange.... you won't even be eligible for trials..they are looking for PURE PDers......the tests they have done have been short term..2 years tops and not enough data to come to a good conclusion that it helps....shams and tops are almost even so it may work for some but has the same results on placebos....

Zinc, mucuna, amino acids and all that stuff in my opinion, should be left to the blood work...if it says your zinc is low...supplement if it doesn't adding it only causes worse things...Mucuna, the top herbalists are saying pooh pooh as it deals with has benefits yes, but don't go out and buy it....studies show it has no real affect on PDers....then there was some root in Serbia, An Aborigines root that "cures" PD....Talking world wide as I do...each country has it's snake oil...and wow are there some far out ones....we just have to pick through the garbage and find ourselves the reality of it all...In order to have to have order to have food you must have money to buy it...

Proceed with caution with your doc..if not happy..keep searching...but weigh all options, keep an open mind and take your meds.......

By mytngenes On 2012.05.15 14:10
Amen! Thank you both for discussing this.

By dkleinert On 2012.05.24 21:25
Lohengrin and KarolinaKitty: I love you guys!!! I only wish I had more hours in the day so I could be here more often just to read your statements. I could not agree with both of you more.

The only thing I know that has helped my pd husband's pd symptoms is changing his diet and removing all the sugar and junk and feeding him only raw organic vegetables and fruit, green smoothies, nuts and seeds. He did do it for about a month, and he was standing straight, had lots of energy, looked me in the eye all the time, and we even went away for a fun couple of days to Nashville. He walked all over the place and we had a good time - first time in many years. But then when we got home he decided he missed his junk food too much, cookies, chips, etc. So I relented and he went back to the hunched, unsteady stance and walk (he even fell hard the other night and brusied his ribs badly), withdrawn personality, looking down not out and up, more child-like I know a pure, raw organic diet has some affect - but a cure - no way. That was not even what I wanted - I was worried he would end up with diabetes like his Mom and then we would have those symptoms to deal with too, so I read that the raw, organic vegan diet reversed diabetes, and it did for him - his blood sugar was totally normal within 3 days and stayed that way the entire time he was on that diet - it was great, even his blood pressure was normal, but now it is back to borderline diabetic and high blood pressure he has to control with his meds. He is a real sweet food and salty chips junky-he says he can't help it. Guess it is the lack of seratonin in the brain that he misses without the junk.

Asked his neurologist about stem cell therapy, and he said it is very promising for PD, just can't get it in the US now. Gene therapy also, he said. I have wondered why Michael J Fox has not had stem cell treatment - he surely can afford to travel and not worry about the cost. There have been many successes with adult stem cell treatment for pd outside the US. Maybe because one treatment is not enough........

Anyway - I agree with both of you about all you so eloquently stated! Love you guys!

Donna in NC

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