Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 03-09-2007, 05:36 PM #11
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Default I would rather remain friendly...

...but please cite your sources. I wouldn't try to outshout the actors on the old "Crossfire" and I won't try to outshout you. I have suggested a website and a webcast to back up my statements.

Jaye
Jaye is offline   Reply With QuoteReply With Quote

advertisement
Old 03-09-2007, 05:39 PM #12
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Jaye Jaye is offline
Member
 
Join Date: Aug 2006
Location: The Left Coast
Posts: 620
15 yr Member
Default

I abhor the "thanks" labels, but would like to extend thanks to madelyn for her well-reasoned opening post.

Jaye
Jaye is offline   Reply With QuoteReply With Quote
Old 03-09-2007, 05:41 PM #13
reverett123's Avatar
reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default jaye, in all honesty, i am confused.

I gave links for each of the statements. -

And I definitely don't intend for this to be a personal thing.

-Rick
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
reverett123 is offline   Reply With QuoteReply With Quote
Old 03-09-2007, 11:11 PM #14
stevem53's Avatar
stevem53 stevem53 is offline
Senior Member
 
Join Date: Aug 2006
Location: Rhode Island
Posts: 1,221
15 yr Member
stevem53 stevem53 is offline
Senior Member
stevem53's Avatar
 
Join Date: Aug 2006
Location: Rhode Island
Posts: 1,221
15 yr Member
Default

Quote:
Originally Posted by olsen View Post
I continue to perseverate about this topic, so my thoughts:
the discussion about dextromethorphan and its "unscientific" use by several members of this community reminds me of the story of amantadine and how it came to be used in PD. It was purely observational information from PD patients who were taking the drug for its flu-protection effects. these individuals reported the effects to their physician who reported the observation in one of the medical journals. Debate continues about amantadine's mechanism of action--is it a weak dopamine agonist , releasing dopamine from nerve endings thereby allowing more availability for dopamine receptor activity or is is an NMDA antagonist, counteracting increased excitatory glutamatergic activity, or does it affect the cholinergic system, or something else?


perhaps one of the members who is taking DM could persuade their physician to write an observational report for a journal and then it would appear to have the approval of the medical community, though in fact, would be an observational report from one physician.

I have found this community to be one in which there is sharing of information that is "scientific", "observational" and alternative. Some of us need the approval of physicians to undertake a therapy, others do not. I do agree that we are all responsible for researching a potential therapy prior to adopting it, but I for one welcome this kind of exchange. due to the overwhelming financial objectives for pharmaceutical research today, many potential therapies are lost.

One of the neurologists whom we consulted in 2005, related that many of her patients were reporting postivie effects from taking "Mobic", a non steroidal anti-inflammatory. Have not seen a research study utilizing this agent, and probably will not. She retired from practice before writing up the reported observations.....

taken to its extreme, any pharmaceutical therapy or surgical intervention for PD is "experimental" for any individual patient. acting upon shared observational information after researching the information oneself has obvious hazards, but witness the reports of problems with the dopamine agonists. you obviously hedge your bets when relying upon FDA approved drugs, but the risks remain.
I am in hopes others will not be discouraged from sharing their unscientific observations --perhaps one of us will stumble upon an "amantadine". In the meantime, whose signature includes the pronouncement--"go hard science"!! I agree, but I will attempt to help myself as much as possible as I rely upon hard "sanctioned" science.
madelyn
Thanks Madelyn..That is a very open minded post..You mentioned that maybe one of us who are experimenting with DM could persuade his/her Dr to write an observational report, and I think that is a great idea, for this is the only way that potential treatments get out in the open for evaluation and scrutiny by the medical community..The problem that I have with that is that I dont have a Dr who thinks out of the box, and I think it takes some out of the box thinking and open mindedness to even consider alternative treatments..I spoke with him about LDN about a year ago..I even did the research so that he wouldnt have to take any of his time to do it, all he had to do was read it..I asked him to just take it into consideration..He said that he would and that we would discuss it in 3 months..At my next appointment we talked breifly about it, and his decision was that he was schooled in the science available and that in good conscience he could not Rx LDN for pd even though it is an FDA approved drug..He said that there are all kinds of "miracle cures" out there, that turn out to be a sham..and to some extent he is absolutely right..He used cancer as a reference for these "miracle alternative cures/treatments"..He was however willing to Rx Tramadol because I told him that I tried some, and it helped with stiffness..I did change my mind about that idea when I learned that even though Tramadol is supposedly non-addictive, and safe, I learned of some people who were abusing it, and one person whom I knew personally..Other than that, I knew that the best I was ever going to get out of my neuro was Sinamet and Mirapex, and "see me in 3 months and we'll see how you're doing"..Things being as they are in my relationship with him, I havent decided if Im going to tell him about the DM..I see him next month, and if I am feeling as good as I have been feeling the past couple of weeks when I see him, he is going to wonder just what Im doing different, because when he goes through his battery of examinations of my motor skills, he is going to notice a remarkable difference..Ive tried some of the motor skill drills..(the ones that I remember)..and I know without a doubt that I can do them with greater ease that I could the last time I saw him approx 3 months ago..I have come to a crossroad with him in that I think he has figured out that basically I march to the beat of my own drum, and if I think there may be a shread of hope in a reasonably safe non-conventional treatment, then I just may try it..Ive thought about herbal suppliments, as there were discussions about them at the WPC..and ironically..all of the herbal suppliments that they suggested have already been discussed on this forum

I watched "Lorenzo's Oil" yesterday, and because of his parents persistence, they were able to put together a concoction that treated his condition with some limited success..If it werent for those who are dedicated to a cause and willing to open mindedly think out of the box..Then some of these remedies that are right under our noses will go un-noticed..I have no idea if DM is going to stop my progression..that will take a few years to determine..but I have a degree of certainty that it has rendered me less symptomatic than I was a couple of weeks ago..Something has definately changed

When I think about my battle with alcoholism 17 years ago..If someone had told me the AA was a waste of time, I might have never sobered up, and probably wouldnt be typing this post, because I probably would have been dead a long time ago..Addiction is another mystery to the medical community..A physical and mental malady that is treated with meeting with other alcoholics, honestly, altruism, open mindedness, willingness, and spirituallity..The medical community sends alcoholics to detox and tells them to go to AA, and they dont even have a clue as to how it works, but they know that it does for those who are vigilant, and honest with themselves..The judicial system send them also, and in some cases court orders them to AA..They have no idea how it works either..they just know that it works better than anything that the corrections dept has to offer..The medical community is still trying to create a pill for alcoholism, because it is how they rationally treat illnesses..Ironically one of those pills is the high test version of LDN..(Naltrexone 50 mg)..It curbs the craving for alcohol and heroin, but only as long as the patient takes it..What the medical community hasnt figured out yet is that they are treating the physical side of alcoholism, and not the mental obsession with Naltrexone..One bout with mental obsession and the patient stops taking the Naltrexone, and the physical craving ensues and they patient ends up drunk or high, and leaves the Dr's scratching their heads in confusion..The old remedy was anti-buse, which made the alcoholic voilently sick if they touched a drop of alcohol..But the same dilemma confronted this treatment as well..You just stop taking the anti-buse and get drunk

Some of my thoughts for what its worth
__________________
There are those who see things as they are and ask..Why?..I dream of things that never were and ask..Why not?..RFK
stevem53 is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 08:39 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.