It's common to read on this forum that alternatives are harmless and have no side effects. But what about when a PWP eschews traditional treatment in favour of an alternative, and their quality of life suffers as a result? All we have is the immediate future. Today. Probably tomorrow. Maybe the day after that (these measures are not literal). Struggling trough this afternoon, the day after that and they day after that in search of a quality life in the future is crazy when the basis on which you are doing so is incredibly flimsy (and that is being delicate. In person I would be far more direct about it).
This thread is what motivated me to post this (I am not posting about the B1 - the architect of the B1 regimen, to his credit, never encouraged people to cease or refrain from using PD meds):
There are no shortage of other threads just like this one. A caregiver reports that they are confused as to why symptoms are progressing despite them sticking to some alternative 'protocol' they heard about.
Diagnosed 1.5 years ago, there's every chance that the deployment of traditional PD meds (along with a bit of tinkering, yes) could give this PWP >70% symptom remission for years, perhaps more than 5! But instead, he struggles through life because his wife has been sold the dream of a 'recovery' and some baseless fear, uncertainty and doubt about PD meds. And no, mucuna does not, in most cases, deliver the required dose of L to where it needs to be on a consistent basis (and in any event, mucuna won't save this PWP from all of the awful med side effects they have heard about, either).
No, I am not saying the PWP would be guaranteed anything from PD meds. BUT HE HASN'T EVEN TRIED THEM.
I am not saying you should swallow the whole box of CL. But trialing PD meds to see which ones work for you is by far the most logical thing you can do to manage your PD. Yes, there are supplements and other adjunctive treatments, including vitamins, exercise, meditation, dietary selections, and so on, and many of these are beneficial, and some of them are super important (exercise being a primary example - others here are better placed to comment on the importance of vitamins, meditations and so on). But unless you have very early PD that isn't really interfering with your QOL, they are SUPPLEMENTARY, NOT ALTERNATIVE. And yes, if PD meds don't work for you (though you should experiment with a wide range of doses before reaching this conclusion), then you may be forced into other avenues.
You never get back the time you lose to shitty quality of life. Not with PD. Do what you need to do to enjoy today.
Probably most importantly: be especially skeptical of anyone will to sell you or advise you on a PD 'protocol' that promises a recovery. Even if they are not asking for money, that does not mean their advice is accurate. If it worked, we'd all be doing it, and there would be evidence of thousands of success stories, not a handful.
High level summary (have copied two relevant block of texts here):
- Well meaning spouse of PWP
- husband dx 1.5 year ago
- taking mucuna, HDT
- following Howard Shifke's protocol
- Recently started Restore Gold
- has never had CL
- PD symptoms getting worse
- Levodopa phobia issue
"My husband was diagnosed 1.5 years ago and the more I learn, the more I realize how little I know. I'm so thankful for all the knowledge I get from all the well informed people, like yourself, in this forum, who have first hand knowledge. From the very beginning, along with HDT and MUCUNA, we have followed the ""Recipe for Recovery" by Howard Shifke, who along with 7 other patients has completely reversed his disease and recovered without any drugs or supplements. So far, it has helped my husband quite well with energy, mental clarity and overall wellbeing, but his annoying hands/arm tremors seem to slowly get worse disrupting his speech and making things worse. It is so frustrating and confusing when you are left on your own to decide what to do, especially because neurologists have no idea what really causes this or how to successfully treat it. We are now adding a new protocol. We started taking Restore Gold a week ago...we were encouraged to do so by some who have experience positive results with it.It takes 2 to 3 months to notice results. We're praying it will help. If it helps him, I will post it here."
In response to "why not try CL?"
"I guess because we are worried and want to avoid the adverse side effects of the medications, especially after witnessing some me people we see, who haven't done well on them and whose doctors push only drugs. It is my understanding that they might help to a certain degree...but eventually they seem to give in and later some other serious reactions may happen. I tend to have more faith in Natural Medicine to heal and increase the dopamine level in the brain naturally or by increasing the precursors to making your own dopamine."
The thing that gets me going Chris is family members who in good faith think they are helping their spouse or loved one by overseeing everything that passes their lips. They often are a barrier for the pwp having the treatment they choose because family are inclined to take over and make decisions for them. Having pd is no fun, having to struggle everyday because of alternative, unproven treatment choices is no fun either. Family think they are doing their best and posters here offer all sorts of unfounded advice but really it is all just making things even more difficult for the pwp. .
A well-balanced posting in my opinion. I agree that symptom control is of great importance and that prescription levodopa medications are beneficial for many or most of us. In addition to maintaining quality of life, these meds also mitigate adverse medical consequences of Parkinson's neurological impairment, which are significant. The idea that early use of levodopa accelerates the development of levodopa -induced dyskinesia has been refuted to my satisfaction.
Well written post. This is the one biggest complaint that I have , that new people as soon as they announce their presence are immediately jumped on by someone promoting some miracle and there has been times when the miracle worker does tell them to forgo the medications that he has been prescribed . We have fought that over many years and I thought to some effect but the miracle worker is now telling the new guy to read his profile and to contact him by personal Chat, then any recommendations are now behind the scene.
The problem seems to be present in every public forum . I have also written posts about it but its peeing against the wind. The next problem is the people who do not have PD and have no idea what we are going through yet continue to post nonsense and demand EMPATHY and political correctness and that gives the mods something to do instead of taking on the pretending doctors.
I think it is worth reminding everyone, since there are new members on the forum who may not be aware, that the founder of HDT/B1 as a potential vitamin to use for PD was a neurologist (Dr. Costantini) long before he ever had a clue about B1 for PwP. In my experience, he was open minded enough and wanted the best for his patients to even consider using B1 on his patients, which many forum members have reported that their neurologists do not even want to hear about. He cared enough about his patients to offer them HDT as an addition to their existing pharmaceutical regimens once he realized it had benefited his first patients who tried it. Eventually he started treating patients from around the world via free email consultations while still maintaining his office practice with over 2500 patients worldwide.
For his email consultation patients, he always was perfectly clear on the point that he felt they would get the most benefit from HDT/B1 if they used it in conjunction with various C/L prescriptions. Not everyone wanted to start using C/L and on their own opted to use "other treatments" than C/L with HDT such as mucuna pruriens (MP). I asked Dr. Costantini for his opinion on MP as a substitute for C/L and his reply was that he had no experience with MP, so he had no opinion on the subject, but he would always follow that with his opinion that his patients were getting the best results with the C/L and HDT combination.
Many forum members report significant benefit from both the C/L and HDT combo and from the MP/HDT combo as reported here:
Although Dr. Costantini gave email consultations and corresponded with the email patients regularly to answer questions and help them with dosage adjustments of both HDT and C/L if they were using it, he had zero control over what the email patients actually did and some chose to use HDT with other than prescription meds and if their own combination was useful as some would report back on the forum then others might test the "different combo" also to see if they could achieve significant benefit too. In some cases they did and in some cases they didn't .
Anyone can have reactions to meds and alternatives that will affect their quality of life negatively. It's a fact of life.
Like most things that PwP try for their relief of symptoms, including prescription drugs, it requires trial and error to find out what works for the individual.
The bottom line is that many PwP will trial and error test, meds and alternatives for the sole purpose of improving their quality of life through symptom reduction or elimination. Obviously, some will go to greater extents than others to improve their quality of life, as this forum seems to exemplify very well!
I am unsure why defending the good doctor is being done at this juncture. I can not see any thing derogatory said about him . We were not talking about the value of alternatives vs Prescribed meds. We are talking about non professional supporters of any alternative telling PWP especially new members that they should stop taking prescribed medication (poison you know ) and devote themselves to fast walking or running slowly with a spoon and an egg or whatever, no matter or concern about the PwP's situation.
I don't really know either. I even went out my way to note that the dr never claimed HDT was an "alternative", or at least wasnt an advocate of ceasing or avoiding their use.
My point, GymBag, was not defense of Dr. Costantini, as he needs none. My point was to add clarification and context for newer forum members who may have no idea of what that part of the conversation was about. Older members are already aware of that background, but more recent members may not be.
Yes. You see so many posts of that type.In essence classic anti-science, expert phobic conspiracy theories. Basically saying "because neurologists don't know what they're doing I have taken responsibility for my pwp's health and implemented a serial and incremental regime of alternative therapies which are working well, but in spite of that his condition is worsening and he is suffering terribly. I just wish there was more i could do"
"Basically saying "because neurologists don't know what they're doing... "
I'm not writing this for argumentative sake but based on the fact of what I experienced. AND I'm in no way generalising which means I can only speak for myself and what I experienced... so this may be a one-off..
My neurologist didn't demonstrate to me that he knew what he was doing... infact he was so bad... really awful that I stayed off meds for a long while, it took me several months to trust the meds
Neurologists almost certainly know tons of stuff. They need a degree and 5 years training minimum.
They may be a mixed bag in terms of service delivery. I have 3 of them - one at Carcassonne who originally diagnosed me, and who, in spite of him not knowing loss of smell was associated with PD, I have a lot of respect for.
No2 is my SPARK trial neurologist, and No 3 is my Toulouse Hospital consultant I was referred to by No 1, and who got me a place on the SPARK trial. She is a bit fierce - my wife thinks much too hard. I got put on the naughty stool again, big time for just stopping Pramipexole. Like a naughty child she admonished me "Vous avez fait une grosse betise.." which means you were really stupid. She doesn't pull any punches. But I let rip at her, pointed out I was not a 3 year old, had worn long trousers for some years now, and knew about the points she was making, and had consulted the other doctors, who had in turn sought her advice. We got on just fine after that
But you maybe need to find one you can relate to , and recognise they will all have different approaches, and there is no "one size fits all" correct approach. No3 is a Parkinsons specialist (one of the countries leading ones, at a major university hospital) - and it shows
That's it.. neurologists have got to have the right attitude towards their patience. I was also disappointed that apart observing some external symptoms, he did not collect any bio and lifestyle data from me that could aid research and also help me. All he did was to dump meds on me and then tell me that the meds would be fighting a loosing battle with my symptoms and the meds dose would have to keep increasing for my health to be on the winning side until the dose increments can do no more... in my mind I then completed the rest "then I'm fucked"
Sorry. I was about to go in for an MRI scan and they're not my favourite. My point in saying idiopathic was this disease was named after Dr James Parkinson who accurately described the disease perfectly, 200 years ago. It can be traced back to 1000 BC at least in the Bible account of King David.Long before agent orange, or any other modern herbicide or pesticides, 5g phone masts, modern medicine or diet.
Something we still don't understand kills brain cells. Things like pesticides may make that worse. Neurologist No1 said to me "we get a lot of Parkinson disease here because of all the spraying of the vines"
But it's not directly causal. I am the only person I know with pd in my village and a 5 mile radius and I moved there recently.. Serge is in his 70s and has been spraying the vines all his life wearing no protection and is fit and healthy
Theres a reason 100% people who have parkinsons for a long time take c/l. Its madness not to at least try them.. Also people tend to forget or don't understand that parkinsons is not 1 disease. Its likely many different diseases under the one banner and what works for one, may not work for others. Some people get very vocal when something works for them because it probably works for them (placebo or not) and people get equally vocal about saying it doesn't when it doesn't work for them. Pharma drugs should be the front line for all regimens but different supplements may work for different people depending on what type they are.
"Its likely many different diseases under the one banner and what works for one, may not work for others."
This is probably why pd meds do more harm than good in some of us. So, there is a need for alternatives for those of us.
I do agree with Chris that some members jump on new guys pounding their "cure" and that's too much. Yes, they do this because "Some people get very vocal when something works for them". Everyone must evaluate what it's worth. Shutting them up is not the solution because some of their info does work, at least for some of pd sufferers.
However, there is also lots of good avise and info for symptom relief written by knowledgeable people not in the classicall medecine business.
Med responders have their answer at their neuro's office, so why come here to constantly criticize and often ridicule others looking for help?
Are people ridiculed that frequently here? I think i see more comments about people being rediculed than i do comments that actually ridicule.
In any event, this is an health forum. What is posted here should be factual and not misleading. Clearly, personal anecdotes are well within bounds. But when people start posting misleading claims, false information or unproven claims as if they are fact, we should feel comfortable stepping in offering a counterargument (or telling people they are wrong if that is obvious). If that's not ok, then suddenly the place becomes a hotbed of unrefuted misinformation (which it has been, at times).
Let's not conveniently and selectively discount the following facts before you unfairly criticize and judge the new member (or other members) coming to this forum for help.
MCC950 has stated:
"He's not sure if HDT helps him or not, but our integrated family doctor wants him to continue taking it, so we will follow her advice just in case it helps."
"It seems like nothing stops those tremors for us and for 5 months we tried Rasageline, which If I’m not mistaken is generic for Selegiline."
"So far, it has helped my husband quite well with energy, mental clarity and overall wellbeing, but his annoying hands/arm tremors seem to slowly get worse disrupting his speech and making things worse. It is so frustrating and confusing when you are left on your own to decide what to do, especially because neurologists have no idea what really causes this or how to successfully treat it.. "
It is clear to me that she and her husband are under the care of a practicing Dr and have tried the MAO-B inhibitor that acts to increase the level of dopamine in the brain along with Mucuna. Her later post indicates that they actively scan for bloodwork to monitor the issue diagnostically.
Also, let's not argue against the fact that Mucuna is indeed a source of L-dopa and ridicule forum members only when it's convenient.
You said it yourself - the l-dopa component of Mucuna is chemically the same as in levodopa.
"In the treatment of Parkinson’s disease, some results in groups of patients and in experimental animals show that, apart from natural levodopa, Mucuna pruriens has other ingredients that show outstanding features. It must contain other substances that improve the absorption of levodopa and metabolic efficiency"
Mucuna amino acid contents - glycine, methionine, serine, tyrosine, tryptophan, etc etc. - look similar to what some members often supplement? Certainly not limited to Levodopa's C9H11NO4.
"The following approach definitively addresses PD, L-dopa, and carbidopa-associated side effects and adverse reactions which interfere with achieving optimal L-dopa results."
"These reversible relative nutritional deficiencies (RNDs) may facilitate and accelerate irreversible progressive neurodegeneration"
“Normally, L-tyrosine and L-tryptophan dietary intake provides optimal competitive inhibition balance between dopamine and serotonin precursors with no side effects. However, for proper balance, like force must balance like force. L-tyrosine must be paired with L-tryptophan and L-dopa must be paired with 5-HTP.”
'Repeated measures analysis revealed a significant improvement of LIDs during the 50 mg 5-HTP treatment as assessed by the UDysRS and UPDRS-IV scores."
As I said, that thread motivated me. There are no shortage of others. I didnt say everything she was doing was wrong, simply that she is doing a disservice by failing to try CL whilst her husband's physical symptoms deteriorate. Only you could take issue with the suggestion that they should definitely try CL.
The number of private messages i received in support of my post make me more more than comfortable with it. I'd consider Park Bear a hard marker and someone i hold in infinitely higher regard than I do you, and frankly the mere fact that you were along to miss the point simply further reinforces my belief that i am onto something. If you had expressed agreement, i would have started to doubt myself.
I used her as an example of med phobia. I made a point of noting that she meant well. She is a victim of the perpetuation of (or the defense of) myths by you and others like you, who have watered down the ability of others to provide accurate or honest feedback on the claims of PD 'healers' for fear of being accused of engaging in unwarranted ridicule.
You missed the point that her husband is under professional care, just as in most of the forum members diagnosed with PD. You're assuming that you know more than functional healthcare professionals, not having the slightest accurate detail of an individual's situation. park_bear clearly posted under that post that he sees no issue with someone trying mucuna with thiamine. Here's the recap for you - "I see no reason why Mucuna would not be as good as C/L with regard to complementing high-dose thiamine."
If her husband was under competent professional care, her CL phobia would have been apropriately addressed. Either that or she is ignoring the doctor due to being subject to misinformation. She has been convinced by the likes of you that becuase neurologists cant cure PD yet, they should be ignored. Good work.
You are some hypocrite to suggest that others are are putting themselves above a patient's doctor. You spend half your life here telling people what they should take.
When asked directly why they hadnt tried CL, she specifically called out her phobia of it. She did not mention, or even imply, that her Dr had considered it and decided that MP is superior or as good. Again, she specifically called out her phobia of it.
I was referencing PB's comment in this thread. So what if they agreed that MP could be an effective complement to HDT. I have not said that MP is never effective.
lol, projecting much? Yes, I try to help people who come here asking for help and I offer possible suggestions, and such is what a forum such as this is for.
What do you do other than constantly creating a pessimistic vibe here making it very unpleasant for everyone?
9 people agreed with the post by 'liking' it and several others posted their agreement in comments anf private messages. You dont speak for the forum, im afraid.
I am not convinced that ChrisWF is a PwP. Her writing style and her responses to members of this forum indicate that she is a normal individual who supports/promotes pharmaceuticals. When was the last time she shared her therapy protocol or complained about any of his/her symptoms???
Dr. C. and my husband's assistant professor MDS didn't dismiss, but rather encourage alternative routes for PD. Shall I accept Chris's opinion or the individuals' I've just mentioned??
"The point of view depends on the ability to observe...
And what about our personal ability to observe? We are so different perhaps because we have a different stage of illness, preparation and personal certainties. Personal certainties that sometimes become fixed ideas in which in the absence of care they are the last bastion of hope against the inevitable devastating consequences of the PD.
But these fixed ideas are also a trap, they are like colored lenses that give a personalized and pre-established vision that prevents us from seeing and accepting new things outside the box."
All we know is that ChrisWF through multiple anonymous accounts on this forum has been promoting drug trials repeatedly when not trolling alternative/holistic approaches. Recently for the first time, s/he started claiming is a PWP and trying very hard to blend in, including following a brand new member with a single post. Personally, I'd boycott anything s/he's selling or promote, and I know many members feel the same here.
People shouldn't fall trapped in the fallacy of appeal to authority - it impedes in making progress even if it gives them comfort in conformity. As many of us know, a few great Drs and healers are progressive and not closed-minded to know from extensive personal experiences that there is counter-balance to the applied force. They're aware of the systemic benefit you could attain from restoring the delicate balance that has gone awry. Recognizing such leads to the progress in mainstream research gathered from myriad anecdotal successes, such as that last article I've posted which is a randomized, double-blind placebo-controlled cross-over study, yet some are still too blind to see it.
All I know is that you're one smart cookie trying the best you could for your husband and you're under great care by your integrative Dr. Mischley.
“The only true wisdom is in knowing you know nothing.”
“Smart people learn from everything and everyone, average people from their experiences, stupid people already have all the answers.”
There are a few forum members such as you whose contributions to PwP and care givers are deeply appreciated. Without your knowledge and sharing information on holistic therapy approach, I would still be in the dark concerning PD, and I would solely depend on "Big Pharma's" therapy protocol.
My co-patriot Socrates drank his konio (poison) for his beliefs.
"But these fixed ideas are also a trap, they are like colored lenses that give a personalized and pre-established vision that prevents us from seeing and accepting new things outside the box."
'Fixed ideas' like being so doggedly against (some or all) traditional PD meds that you won't even trial them to evaluate how they treat your condition?
Or are fixed ideas a good thing when they rule out traditional treatments and a bad thing when they do so for alternatives?
And all we know about you is that you promote word-salad mysticism that is largely undocumented when it comes actually moving the dial on treating Parkinsons in real human beings. I also know many here that consider you a know-it-all that, in the fullness of time, will fall away like almost all of the others that have promoted similar ideas. And those that fall victim to buying into your ideas about the "systemic benefit you could attain from restoring the delicate balance that has gone awry" will all inevitably reach the same conclusion as the rest of us. The only difference is how long they take to get there.
I have been about as staunch a supporter of listening to your doctor as anyone on this forum. In fact i have had several discussions with MBAnderson where he formed the view that i was too reliant on doctors.
"I am not convinced that ChrisWF is a PwP. Her writing style and her responses to members of this forum indicate that she is a normal individual who supports/promotes pharmaceuticals. When was the last time she shared her therapy protocol or complained about any of his/her symptoms???"
These kinds of ad hominem remarks are supposed to be off limits. I could just as easily say to you, Despe, that i am not convinced, based on your writing style and responses to members of this forum, that you are fit to care for a couple of dogs, nevermind your chronically ill husband.
But i havent done that, and in fact when you wanted to know how Ian Frizell was doing, i went out of my way to find out some information for you.
And by the way, i am still a man (unchanged since the last occasion i informed you of this), so that doesnt say much for your ability to recall what i have or havent posted. If you can't recall basic details like my gender, perhaps you ought not attempt to summarise what i have otherwise posted.
Well, I am glad you've got all your symptoms under control with the right pharmaceutical therapy. It's very egoistic of you not to share it with PwP of this forum where its members exchange personal successes and/or failures with their particular therapy protocol.
Please leave my husband out of your comments just as I never mention anything about your partner. FYI, my husband is a heck of a lucky guy!
So now, in your eyes, complaining equals validation as a PWP? That is ludicrous. You clearly have not read a lot of what Chris has written. You are very judgmental and it is quite unpleasant.
Please be aware that what you're reading here is what's left after the admins have diligently modified (removing many sentences in responses) and deleted ChrisWF's many horrible replies outright just as in many other post threads. He resorts to gaslighting and calling people horrible names (cretin, dog, etc) and last accused Despe of not "fit to care for a couple of dogs, nevermind your chronically ill husband" and at a point even said he feels sorry for her husband - all these are completely uncalled for. She simply responded to that and certainly did NOT deserve that. No one deserves that here.
Despe has been an extremely positive and helpful contributor in this forum. I can't say the same for others, and I'll leave it at that.
The reason I didn't answer this question is because I knew you were asking with hostility and I sensed bitterness that wasn't conducive to a helpful discussion here. No I'm not a dirty politician as you've accused me. Stay positive - it'll be better for your health.
There are doctors and doctors! I'm a guy who believes in science not in bs wonders. When I felt the symptoms for the first time I saw 6 neuros in one year (3 MDS) and I realized some are pure idiots. The years in the school did not prevent that. The best two of them are University professors and have publications about PD. They were more interested to recruit me for some trials to prove some of their theories. I told them I can't do that because I'm still working and they kind lost interest in dealing with me. When I told them the C/L does not help me too much (3x100/25) they doubled the dose to 6. I just stopped seeing them and now I get C/L from my family doctor who said 6 it was too much. So now I'm taking 3-4 a day but as I said I get a little help; but still I take them.
The big help comes from HDT! Initially I did not believe in it but I gave it try. When I started HDT I was not taking C/L; HDT helped with everything and only a little with the tremor; I took C/L for the tremor but I noticed its amplitude depends more of my state of stress than if I take or do not take medication.
The doctors who impressed me are dr. Jeanmonod (- we had a logic conversation about the PD and everything he said it made sense -) and dr. Constantini.
Again, having a degree no matter you are doctor, engineer, programmer etc. means nothing if you do not have a deep understanding of a problem and if you are not open to other ideas.
About 95% of the doctors prescribe C/L and dopamine agonists. Sometimes, exchanging information with other people, is very helpful. Sure, everyone should see a doctor but a doctor is a human, not a God! And everyone is free to take advise from this forum or ignore it.
Normally Chris, I disagree with you but well written post. I feel (IMO) you hit the nail on the head. I don't disagree with supplements however they are very situational and subjective, aka what works for me may or may not have the same effect on another PWPMany thanks for the efforts typing it up
All I know is that as a wife of a pwp every time he tries something new that the doctor or Neuro gives him his symptoms are not improved and he just feels sicker. He is unable to get up to a so called therapeutic dose of C/L as the side effects are worse than the original symptoms. Antidepressants were the same. Extreme agitation and suicidal thoughts.
As long as I have known him whenever he is put on a medication he will get most of the side effects. And no he doesn't look them up first.
I do think genetics affect processing of pharmaceuticals by the body and not everyone can process them in the same quantities. Clinical trials never have 100% success rates and usually report side effects amongst a % of trialists so why would we expect all patients to have a successful outcome.
This is absolutely true. For example, I'm CYP2D6 enzyme poor metabolizer and do not get any relief from traditional standard narcotics. Most Drs still have poor understanding in this area, but hopefully advances in the genetics field will address some of the problems in the future. The same applies to supplements - while some may benefit greatly from a substance depending on their genetics, nutritional, methylation state, it'll have the opposite effect on others if not careful and bring about an additional shift away from the balance towards healing.
How frequently has rescuema talked about his/her PD or treatment? Ill admit that i dont follow them around like a homeless dog (it is contemporaneously flattering and alarming), but i dont remember seeing any personal info at all?
But of course, i am clearly obliged to provide mine.
I was acutely aware that at least a couple of known rouble-rousers would be along to grab some cheap attention, or in one obvious case, massage their irrepressible obsession with me (the cause of which i am not aware and the feeling is not mutual, though to each their own) by deliberately misrepresenting what I said. And of course, if you don't share their views on treatment, or in one case if you dont share their views on what kind personal information you share, you are not a PWP.
Let that sink in. If you dont share their views, including those on how much personal information you share, you are not a PWP.
Of course, the very same people are, when it suits them, desperate to promote inclusion. As long as you agree with them, you are welcome here. If you don't agree, you are guilty of ruining the place for everyone. Even when it is clear that many others share your views. Perhaps we should all be forced to leave, so that the place is exclusively a venue for the discussion of alternative treatments?
Not that i should have to explain myself, since how much personal information is my business and my business alone, but the reason i dont share information relating to my symptoms or treatment is this: to be honest, i find that info kinda boring and likely of little use to people. My experience is characteristic of someone with earlyish PD, so there's not much to report. How much value is there in me reporting that i tried all the mucunas (didnt really work for me, from 10 percent to 99 percent) have tried many of the popular vitamins (in fact in a failed attempt to satisfy one poster of my willingness to be open minded, i sent a photo of all the B1 bottles i had bought to try. It has not done anything for their conspiracy theories, evidently) and and am not really sure of what is doing what? Im in the same boat as a guy like JimCaster. I take a bunch of stuff. I don't know what is doing what. So when i see someone say that, i like their post. Why should i type up my own when the content would be boring?
The fact that some people prefer to share every last detail of their PD or their spouse's PD is entirely up to them. I dont believe ive ever criticized someone for sharing lots of details. But if you keep it you yourself? You are not a PWP.
Thankfully, most people here who entered the thread with clean hands were able to understand that my sentiment and motivation were distinct.
My sentiment - that you need to make the short to medium term count as that is all we are (sort of) guaranteed - was driven by seeing my grandmother and mother fade away thanks to PD.
You will never get back any time you sacrifice in favour of the future. Worry about today. Yes balance is important, and we are all very worried about what will happen to us in 5 or 10 years time, but take time to consider appropriate balance in light of the sad reality of PD's relentless march.
The only guarantee we have this is: PD is going to get us in the end. It's a terrible thing, but it's reality. Make today count.
The motivation was seeing the story of a couple who, in my view, had limited their treatment options for irrational reasons. I also noted, and some agreed, that its a story told far too often on this forum.
Finally, treat with extreme skepticism anythat that claims you can be healed, even if they post seemingly compelling arguments for why the claim as much. Thanks to familial PD, ive been running all of these ideas to ground for the best part of 20 years. The pattern is similar: very attractive ideas are promoted and gain a decent amount of attention. A lot of the variables are consistent. it's natural. Completely independent of the pharma profit machine (apparently being beholden to rhe vitamin an supplement profit machine is preferable). The only fairly predictable bit? They fade away over time as reality sets in for their promoters or proponents. Does that mean none of them are good? No it doesnt, but many fit this pattern, which is why skepticism is prudent. I know why these ideas are attractive and their appeal is logical: we want to believe.
There are far too many straw man arguments to refute, but here are some highlights:
- Your doctor is imperfect, unless there's a chance he/she suggested alternative therapies, in which case he/she should not be questioned.
These people have no issue questioning a doctor that prescribes PD meds. That doctor is simply part of the pharma profit machine. A trained neurologist? Ignore them.
A doctor that advocates for alternatives? Oh, that doctor has full stock of the patient's individual circumstances and should not be questioned. A doctor practicing functional medicine? Trust them implicitly.
You think that a PWP should at least try mainstream PD meds before ruling them out? You are closeminded and a pharma shill.
You think that a PWP should try alternatives? You are open minded and a facililator of discovery.
The blatant hypocrisy goes on and on.
I think enough people see it. Anyone that doesnt, doesnt want to, for whatever reason. I sincerelt wish those people the best, regardless of which path they take.
Just so we're clear, it's not your beliefs, ideas, nor of being a PWP. It's your caustic mannerism with disrespectful discords with numerous members with incessant drama contributing to stress - people here don't need it. You don't need it. We'd all love to see you being more positive and direct your energy towards being more helpful.
Take your own advice - "Make today count" You're too young to waste all day spiraling down with endless diatribe. Try to enjoy your life. We all should.
And how concillatory is your tone, when you further conspiracy style theories about whether or not I have PD? Is that the appropriate tone for the forum?
"Recently for the first time, s/he started claiming is a PWP and trying very hard to blend in, including following a brand new member with a single post"
For the record, i first referenced my PD six months ago, within a month of joining. So your remark above is a lie, purely intended to further inflame the discussion and get your little base riled up.
When did you last refer to your PD? Or are you not a PWP?
You continue to think that you speak for "all". I can assure you that you don't.
Clearly, numerous people think i am being helpful.
"It's your caustic mannerism with disrespectful discords with numerous members with incessant drama contributing to stress - people here don't need it. You don't need it. We'd all love to see you being more positive and direct your energy towards being more helpful"
This was clearly communicated to him from the very start by NRyan:
"ChrisWF
I think it can be helpful to try and be a voice of reason....can you do it in a less condescending way please? No one on this site is at a picnic, we are all stressed to the max with this horrible disease and this life on this earth. We would love your input without making us feel like crap. Your knowledge is valued....please continue in a way that supports us. Much gratitude!"
And I reminded him a few months later:
"You have often been offending. Please refer to this before posting unpleasant comments: No one on this site is at a picnic, we are all stressed to the max with this horrible disease and this life on this earth. We would love your input without making us feel like crap.
Kind regards"
But seems like he can't help it. Too bad because even though he sometimes brings good info here, it's pretty hard to take advice from people that are being this aggressively condescending.
The name 'MCC950' to me suggests that the individual holds out hope for MCC950 and its derivatives (as I do); these are, of course, pharmaceutical drugs. But perhaps I am misinterpreting why they chose their name.
ChrisWF, I totally agree with rescuema, ... it's not your beliefs, ideas, nor of being a PWP. It's your caustic mannerism with disrespectful discords with numerous members with incessant drama contributing to stress - people here don't need it. You don't need it. We'd all love to see you being more positive and direct your energy towards being more helpful.
What seems to be lost on some people is that there are number of people that have made it clear that i am helpful. So we are back to the "you are only being helpful if you agree with us" position. Rather arrogant.
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