Solicitation

Most forums have rules against soliciting your own products on a forum. I assume the same is true for this forum. When someone keeps pushing their books and videos under the guise of discussing an issue it is solicitation. Does anyone come to mind?

Most forums would frown on the practice of someone saying they can cure you (Reverse Parkinson's) of your disease and you should not listen to your doctor. Does anyone come to mind?

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  • We would all be worse off if someone who believes that he or she has useful advice for PwP was made to feel unwelcome to post. If you disagree with the advice, debate it in a friendly way. If you find the advice annoying, just ignore it.

    As I see it, the point of this forum is to pass on personal experiences and the results of our own research and the research of others. Our journey through Parkinson's is made easier if we have access to a variety of opinions.

    John

  • Agree hundred percent

  • I missed​ that one

    I have Parkie​13 as Ms Curley.

  • No, no. Parkie 13 is Mary

  • Theresa,

    I have no bogus userids. I just have this legitimate ID. I live in Stafford, UK. I've had PD for 12 years. I normally write on mathematical and computing aspects of Parkinson's.

    John

  • Theresa, JohntPM is absolutely not to be confused with the individual who you are alluding to, not withstanding that they share the same first name. For one thing, JohntPM lives in the U.K., not South Africa.

    I do totally agree with JohntPM's opinion.

  • Honestly John is a bit of a celebrity. He is like the uncle who tells everyone he has not been sick in all his life and contributes it to eating a clove of garlic a day. OK uncle Billy, just tell me over there.

  • Disagree,

  • You disagree with whom, Theresa or JohntPM?

  • I am still trying to figure out this sites angle. Is it to help me, or to learn from me or to sell things to me?

  • I agree totally. We choose our paths, if we want to, and if someone thinks they have a cure, I want to hear about it ...someday there will be a cure. Right now while we wait to find the cure we need to slow down the progression. Any good ideas on how to slow progression?

  • Everyone brings something to the table. If you don't like it, delete and move on.

  • I would not be to hard on people even buzz through me for a loop. As a Parkie I had to take care of my wife during back surgery. When you said that it was your good fortune to take care of your wife with MS, my first thought was man is this guy is so much more patient, kind, loving and lets just say more honorable and understanding than I am. Then I remembered, that's impossible. LOL

    I also have lots of friends with Parkinson's, and out of everyone I know physically I am doing the best for the time I have been diagnosed. Others who I thought were like me started really to physically go down hill at 7 years diagnosed. I don't believe I know anybody who has been diagnosed over 10 without DBS or experimental treatment.

    REMEMBER I AM YOUNG ONSET

  • I am going on 12 years diagnosed at age 52 no DBS no experimental treatment and am doning great. I am now doing Crossfit 3 times a week down from 5 just to save a little money. I can run 2 miles without stopping, dead lift 415 pounds. Today i ran 2400 meters walked 1500 meters backed squated 215 pounds 12 times without stopping and 165 pounds 20 times just to warm up. I do not feel like i am slowing down at all. I am 6 ft 2 in tall and weight 225 pounds up 10 pounds from last year. I take 18 25/100 carbidopa levodopa a day (3 every 4 hours) and 1 6 mg Requip a day. At this time i have a little down time in the last hour of my dose cycle.

    i was doing bad about 3 years ago had gave up but i found a new doctor and stared taking carbidopa levodopa and started Crossfit. I was hardly get out of bed and start my day. Now i get up at 4 am work around the house go to Crossfit. I live a normal life.

    I am better today than when i was diagnosed.

  • I only take one sixth of your daily c/l each day Bailey ( 3 tablets 25/100 Sinemet) but have very poor energy levels,

    I read that continued use of c/l causes tremors if you take to many, you seem to be doing great on them , am confused now as should I increase my dosage.

  • Everyone is different when it comes to C/L. For me i use as much as i can to releive my symptoms. I can not take controled release carbidopa levodopa or any carbidopa levodopa with a extender like Rytary or any extender like Entacapone (Comtan) they cause bad side L effects for me. I can not find any thing about C/L causeing tremors but i found where it can make them worse.

    I do not have any experience with tremor i do not suffer any.

    Bailey

  • Thank you Baily.

  • I HAVE NOT talked to this actor personally but have been told that his dyskinisia has over indulging in sinemet.

  • We all live normal lives. I just live life like a Parkie, and also white and a Christian, middle class family. Just trying to figure out whats happening to me through the window of others.

  • Nice one defiantly exercise is key that's awesome to read.

  • You sound just like my husband , diagnosed age 49 , 11 years ago, takes Stelevo 125 every 3 hours , 5 x a day then stelevo 100 at 8pm , 1 mg asilect and 20mg requip at 5am. Rubs 10k on a Sunday am, mon - golf am , Pilates pm, tues a gym session, weds golf , then gym session, thurs golf and a 2-3 mile run, fri golf and gym session, sat golf and driving range. Life revolves around exercise, painting and his classic cars. Life is very good. Only down side 8.30 he gas to go to bed as his body stops !!!

  • I hope you join him on some of his exercise.!!My wife bikes with me and plays tennis but as she can't keep up on my power walks she has a bit of space! We had 2 ski holidays this winter and we like to get away on the bikes for a few days every so often.We both get 8000+ steps a day so for 66 and 69 we are still hanging in there!

  • I do the Pilates class and the 4 gym sessions each week , they are physio led and are a mixture of cardio and strength/balance exercises . I don't run as I gave a painful hip if I do and also I'm 5 foot 2 and he's 6 foot 1 , much longer stride than me !! I walk the dog a couple of miles every day twice a day , steps always exceed 15,000. We are both celebrating our 60th birthday's thus year 😀

  • Keep it up both of youdefinitely keeps PD in its place

  • 12 PILLS! I UNDERSTOOD THAT GENERALLY THESE PILLS HELP FOR APPROX 2-YEARS, THAN THEY BECOME NOXIOUS, NOT TRUE?

  • Carbidopa Levodopa does not become noxious your body just does not have the ability to use it any more. it can be used as longs as your body can use it.

  • Yeah. Great to hear your storey. It tells me that exercise is the key!

  • Am nearly 69 Have been on Mirapexin and Azelect for nearly 6 years. Started Madopar 125 just one in the morning before exercise and CBD at night. Better than 6 yrs ago.No fatigue ,no anxiety,.dont nap. Recently smell has returned,sleeping 5+ hrs a night. Baileys right the exercise is as important if not more important than the meds.If I skip for any reason I'm not so good.2x 50km bike rides a week tennis x 2 hrs a week at least one fast walk ,average 8-10000 steps a day.Im a PWA practice mindfulness living in the moment.

  • I did notice that 69 was an extremely​ common age. To common.

  • I just read your kind words Hal and the humor today. Sorry I have not kept up. Appreciating your moral support. :)

  • If it can help, why not. 8 years diagnosed. Taking MP, NAC, EGCG, Quercetin etc. Fast walking 3× a week.

    Like Bailey, better today than when i was diagnosed

  • Bailey I came to believe that you were also Ms Curley.

  • Thanks Hal. I'm honored that you think that Bailey and I are the same person. Just to make sure I'm not totally confused you are the person that use to use the userid HAL9000....Right? I forgot if you told me that or why I guessed that.

  • Yes I am also the one that sent you to the ERF site because I knew you were into the stars and the Woman in the Heavens. I was hoping to get some perspective on my thoughts from a Non Christian View. My cohorts if I say anything keep muttering " no man knows the day or the hour. " I am and have been honest with you.

  • "Yes I am also the one that sent you to the ERF site because I knew you were into the stars and the Woman in the Heavens. "

    Say what?

  • I think we should look at the effect that these continual repetitions of the same information has. In my mind, replies containing the same old subject, time and time again whether relevant to the original post or not, close down the converstIon. The repetitive poster is only too willing to argue their point of view as it adds publicity and people get bored and stop reading.

    People new to the group are less resilient to the message touted and have their own personal reaction to the message of "I gave up medication and walked off my Parkinson's"." The rest of us stop challenging out of boredom but that leaves the new members vulnerable to one sided 'discussions'.

  • As a Parkie I became very confused because everyone had an answer. I became aware that nobody really cared what I did. Soup, I did believe you were real. Your answer on what we PDers can do felt very honest.

  • Thank you. I try.

  • Yes, my friend only found the site worth logging on if I was on it. When ever I took a hiatus he would stop logging on.

  • Not to worry--we can vote with our mouses! Everyone has sufficient intelligence to sense the quality of the communications. Newbies will gradually come to discern who is "just being encouraging or informative," seeking info, or out to entertain, brag, push a viewpoint ("evangelist") , make a profit off the needy and gullible ("profiteer") , etc. There's a continuous grey scale separating the last two varieties, which makes it somewhat delicate to exclude the "profiteer" without silencing the "evangelist." (I tolerate evangelists, especially if they're preaching a gospel congenial to me.) I think we will have to practice freedom of speech, and trust in everyone's powers of judgement. But if a bunch of folks complain about someone by using the "report" option (click downward caret, next to "like" button), I am sure the Admin will take the complaints seriously, and make the necessary judgement call.

  • I still don;t know what this site is for? Is it to comfort, learn or sell.

  • All of those that you mention and more -- sharing personal experiences too. There is no one-size-fits-all answer to PD including all the meds the docs prescribe, but what works for one may work for another. When someone feels like something isn't working, it's nice to come here and read about others' experiences too... so you know you aren't alone.

  • Now that's what this bulletin board is all about Ltoque. "So you know you are not alone." PD can be a depressing bitch but I can feel empowered to go on after I read here what all you other Parkies are up to.

  • It is nice when they are natural and real experiences.

  • Wow dumpelkin very well written. "Evangelist" is a very good description. The person may be 100% wrong but telling him that will never change his mind just strengthen his resolve.

    Fast Walking John, does not seem to understand the difficulties associated with his suggested treatment regime. He was banned for a period and came back under conditions and I am sure that if you complain to site management with examples that he would be banned for life. I think that would be unfortunate , but this is not a vote , nor should it be. I do not believe his motivation to be personal gain but as I have said in previous similar posts that he is on a mission much like the Blues Brothers with the end goal justifying the means.

    I do not think that he makes much money from book sales and he is not an outsider come in just to sell books. He is one of our resident characters . We have many characters here, some are more controversial. Have you seen Royprops shirt. We each participate here for many reasons but sometimes not sure why.

  • I can totally understand Mr. Fast-Walker's logic. I think it goes like this: a) I have PD (or at least Parkinsonism), b) by pure happenstance, I started to do fast walking, c) it greatly mitigated my symptoms, so d) what are the chances that fast walking happens to work for me--random sample that I am--but not other parkees? Is Mr. FW really that one-in-a million outlier that can reverse symptoms by fast walking? Or is he more typical of parkees at large? Who can say? I think, short of a large clinical trial, there is no way to answer this objectively. Until that time, it is like arguing Pro or Con the proposition that "90 angels can dance on the head of a pin." One thing is clear though, "brisk walking," if you can do it safely--will benefit you healthwise in a general way, and is very likely to improve your Parkinson symptoms, too:

    foxnews.com/health/2014/07/...

    One should note, though, that the walkers in the above study were not walking at top speed: their so-called "brisk walking" averaged only

    2.9 mph = 4.7 kph, and 47% of their maximum heart rate. This is in contrast to Mr. FW's protocol: he has reported average speeds in his hour-long walks of 5.3 mph = 8.6 kph ( "I was not just walking, I was walking at just off my maximum speed. . . . After two years I had brought my time for walking one kilometer down from well over ten minutes to well under seven minutes." ) In fact, this is so fast, that shorter people like myself (5'4" height) would have to be jogging to attain that speed! Pushing yourself to that extreme sounds much akin to the "forced exercise" prescribed for PD cyclists by Dr. Jay Alberts: "In our studies, under the guidance of an exercise physiologist, the patient actively must contribute sufficiently to the pedaling action that their heart rate is between 60% and 80% of their maximum heart rate using the Karvonen formula."

    medscape.com/viewarticle/75...

  • I believe, it is completely the opposite. When you are newly diagnosed you want to go a natural way, exercise might help, you have an illusion or hope that you are going to beat Parkinson's. And if it doesn't help you are going to know soon enough.

    A lot of times your family wants you to be quiet and take your pills.

    Some people hold the doctors in the highest regard and then we have the Skeptics and the doubting Thomases.

    Some of the effects of the medications for Parkinson's are hard to take.

    A very hard disease.

  • I have no objection to the exercise message but more and more research is advocating mixtures of aerobic, stretches and resistance exercises are the most effective for managing symptoms.

    So, posts on one single method to enable you to do away with medication are not useful for most people and are indeed, counterproductive.

  • I think it CAN be useful to some. Every post here is not useful to every person here. Chew on what you think helps, and spit out the rest! :-) I read LOTS of posts here on meds. Most people are on them, in fact. It's not the direction we choose right now... but I wouldn't want to discourage those ppl from posting their experience because they MAY help some others who are interested in that...

    I'm also in several groups where people ARE able to get their PD symptoms to go away... They are not of the mindset that they are stuck in PD and that it's a "downhill til you die" situation. That's not for everyone but it IS for some... The one thing that IS for sure. PD doesn't have a single cause or answer to it... It's just like cancer. Most go the chemo route because that's what the majority of docs recommend. But others choose NOT to do that, and some are able to recover their health. (People live AND die both ways though...)

  • Am I alone. Do others see what I am seeing. Or am I crazy. So far the crazy has it.

  • Don't start doubting yourself now. :) We all have a limited right to be crazy, so long as nobody gets hurt what's the difference? Open mindedness is essential for some quality first steps toward forming any theory. If I said it once, I said it a hundred times...brain fart...now, what was I gonna say?:)

  • It is 7:30 am and I am listening to history.

  • CRAP, I think like Trump.

  • You just realized that Hal?

  • That is how I knew the man is Brilliant.

  • I am in central time zone. Enjoying the first dose of MP as it releases levodopa, into my brain, pushed across the brain barrier (theoretically) by a small dose of EGCG, a little vit C and a big gel cap of Salmon oil. History channel at 7:30 am? Couldn't sleep in on Sunday? I pray for Goldie's success if he is attempting to do what you proposed. That would be very very historical! Be well, kind and helpful.

  • ltoqe, you said that you are in several groups where people ARE able to get their PD symptoms to go away. Are these groups open to the general public, and can you tell us how to contact them? Thanks.

  • I started feeling the effects of Parkinson's when I was 39, I just didn't know it yet. I did everything I could naturally​.

    When I was diagnosed, it was because of the stress I was under. At that point I was ready for pharmacuticals.

  • It's true. I nearly left the site initially because I thought it was anti-meds. As I was diagnosed (relatively) young, I want to keep the dose as low as I can and so I'm interested in alternatives, but I didn't want to feel that meds were 'wrong'. Luckily I read posts from Hikoi and laglag that made sense and I stayed and I've learned a huge amount from this site. There's such knowledge and vast experience. Take what you need/what works for you and leave the rest.

  • What do Parkies talk about when we get together for a 6:00am walk. The last time was canes and what a great chick magnet they are. I have no need for one but have been told that the need for one was beside the point.

  • I would agree with you Theresa. Too many repetitive posts would be solicitation.

  • The nature of PD is that it is different for each person, in terms of symptomology, progression, stages, types etc. -as I've said before. Some people can exercise with heavy weights, for example, some can't. Some can walk, other's have great difficulty with walking. So, just being supportive, without saying that a certain thing will be best for everybody, seems like a good way to proceed with this forum.

  • It's OK to have one crazy Uncle but too many makes one come up with excuses not to attend a family gathering.

  • Ha ha ha

  • Once I got to a point I told myself this can not be just one person. You have to actually build your own character. Can those nerds of you who played D&D even attempt to play with 10 characters, I would probably start killing off some of my own characters. I became very impressed but started seeing patterns, ones personality bleeding into another.

  • Funny

  • Theresa over 5 yrs of the same same it does get wearing and most people leave. The occasional flareups and divisions on here have nearly all been over the same poster.

  • I must admit, I find the few Parkinson's related Facebook sites that I am are much more supportive and informative than the posts here that are reiterations of the same opinions or copy and paste links without commentary. I enjoy a good discussion and being able to follow people's stories about living with Parkinson's.

    Perhaps I prefer the hurly burly of Facebook, perhaps it is because I'm getting old and cynical but I just dip in and out of this site now.

  • I appreciate encouragement, regardless of how many times I've heard it. It's like a fresh breeze blowing through the curtains and temporarily clearing out all the heaviness of drugs, pain, and fear. On the other hand, If statements have been made admonishing others to give up their drugs and not listen to their doctors, perhaps these could be toned down or eliminated. I would never do either of these two things hastily based on the advice of someone else, and I'd like to think that no one else would, either. However, when a person is newly diagnosed, it's possible that they could be in such a fragile state of mind that they would do something foolish like flush their supply of meds down the toilet all at once. That would be very dangerous.

    I can't remember reading any posts on this forum that encouraged others to exercise that had anything other than the best of intentions. If the posts are repetitive, cursor on down. If you think they're giving dangerous advice, it might be most effective to send them a private email (is that possible on this forum?) and respectfully tell them why you think it could hurt someone and suggest different wording.

  • I have been in that fragile state.

  • Serenity_finaly-1, I appreciate your openness. Probably many of us have been in a fragile state at one point or another since getting PD symptoms. When I'm headed in that direction, I close my eyes and sincerely say, "Jesus, I need your help. I can't do this without you." One of the most important lesson that having PD has taught me is that I can't do my life all by myself. But, for 57 years I sure thought I could.

  • Yes Heartsong,,

    Bless you. For the repetitive poster with inaccurate info I tried the gentle caring careful tentative approach for a number of years and here we are. Nothing changed. Im trying a more masculine factual style for a while.

  • I did believe that you were the voice of reason on this site.

  • It can be exasperating to see conversations repeatedly sidetacked by a spiel, regardless of the content. When a person posts the same thing over and over, they aren’t giving as much as taking. They suck the energy out of the discussion - rather like the dinner guest who turns every topic to “Me.”

    Having an administrator police speech, though, sends us down the wrong road. The restrictions might start slow but would soon get going at a pretty fast clip.

    But that doesn’t mean we have to endure these conversational hijackings in silence. And we shouldn’t.

    Call it out when it happens. I don’t mean a long-winded debate on the merits - that would take up more real estate in a thread and further waylay the topic/query of the original poster.

    Instead, make a pithy, to-the-point-reply along the lines of “But getting back to the question XX asked…” or “ I’ve read your words on this in so many many many other posts here - bless your heart. Now, I’d like to get back to the topic at hand."

  • Yes i remember quite a looooong sidetracking over sidetracking.

  • Been there; done that.

  • REALLY!! I tell you that Goldie is creating Peace by restoring the Caliphate and not a single question? OK it's not to learn.

  • HAL -- What is going on here, is your posts are not being answered because your posts are not being understood. At least not by me. I've asked for clarification on several of your posts and the answers that come back are metaphorical and as confusing as the original post. So I just give up. If you want to tell us what "Goldie is creating Peace by restoring the Caliphate " is referring to, please do so in clear concise comprehensive sentences, if not why should we care?

  • As you know I am extremely analytical. I have been told I think too much. I have concluded to myself that the best way to combat Parkinson's is to become a child again. Wake up every morning looking forward to the day. Run, jump and play, forgot about a chain of music, rediscover it, there is a reason kids play video games- it is fun. My wife became upset with me because I did not want to take the time and learn to play them again. I have lost the dexterity and really did not want to problem solve. I was right, it took a year before I became competitive. Once I did I was in Seventh Heaven, imagine some 22 year old kid getting his butt kicked by a 52 year old Parky.

    I was just given a new game Splatoon. I did not want to play it at first but after watching others play it I found it very addictive. I have a very addictive personality. Some people will say video games, trying to discover music that you listened to, refilling all those memories that takes a lot of work. It was not work then, what changed.

  • Perspective. You had a user on this site, she / he is no longer on it. First I thought I ruined the situation, I felt really bad and left. For some strange reason I had to get some answers. When I found that this person had not left and assumed a different ID. That was cool because so did I. To make a long story short I became concerned that this person was trying to sabotage this site. I even caught her arguing with herself. Again I had to process what was going on here....................................

    Drum roll please ........................ The person whom I thought was trying to divide this site was also running the site. I became Serenity when I processed that information.

  • OK I will make this as simple as possible. Trump is making a big power grab and the Democrats set everything in place for him. 2 sides. Trump is actually going to solve the Peace process by bringing, the Sunni Royalty together and to live up to their 100 year old promise. Now if you get Saudi Arabia, Egypt, Jordan, and Israel together and come up with real and not forced boundaries, you can restart the Peace Process. This is a major play and shift in power. Everyone is looking at Russia when the real player is the Caliphate, Trump, and Israel. Then why is Russia signed on to this plan, because he was left out of the other and would put the economic center in the Middle East and not Africa, why because the Clingons pissed him off some how. Maybe by designing the city of the future and leaving him out. I don't know. What I do know that Rich people treat business like a war.

    I still don't know what this site is for but it would seem that you are trying to figure that out to.

  • Hal that was a thought provoking statement. My son and I had a talk just a couple of days ago and we came to the collusion that the entire world is being run by multi-Billionaries that have an agenda of their own and the Politicians all over the world are nothing more than their chest pieces. Both Liberals and Conservatives and everyone in between are manipulated to the will of this all powerful conglomerate. There is a lot more to our theory and a lot of it is not original. This really isn't the place for political theories though.

  • AGREE.... BUT AT SAME TIME I'M SHOCKED AT MAJORITY OF MEMBERS THAT ARE ON A VARIETY OF CHEMICALS AND PERHAPS SHOULD LOOK FOR ALTERNATIVES. FOR EACH TO ACCEPT OR REJECT, NAY??

  • Its nice to have alternatives if there was ever a problem with distribution of pharmacy pills.

  • I find those posts very useful myself. For people who don't, just scroll on past them. Complaining about someone's opinion/experience certainly doesn't improve the environment here. Who would decide whether your opinion/experience is valuable enough to others here to allow it to stand? You can see anyone's name right at the top of any post. Choose to skip any if they bother you or you already know what they will say. That's what I do. Repetition doesn't hurt. People pop in and out of here, reading only some of the topics. I've met that poster you are talking about in person and heard him speak and demo what he talks about, and I think what he has to say has value (my opinion.) Exercise is the only thing that has been proven to really help PD (I won't go into all the reasons why here, but it certainly makes sense to me according to all the research I've done.) People aren't being encouraged to NOT do what their doc says. They are being encouraged to ADD walking to their routine, and if it helps, then stopping some meds may be an option. If you can't or prefer not to use that method, then move on and find something else that DOES work well for you--and share it here. You are all "human experiments" here, no matter what you choose to do... PD has no exact remedies yet, so everyone here is just adding to the "possibilities" database. Someday there maybe more to go on... It's the same with all of the chronic diseases people struggle with these days... Traditional medicine offers little to help people become healthier. Mostly just symptom control/erasure. Again, my opinion.

    If you read most of the posts here, medications are not a magic bullet for many or for long. BUT, that being said, they are the ONLY option most doctors are allowed to recommend (according to "protocol" they have to follow--for liability, insurance coverage, and other reasons.) When it's just you and your doc dealing with your issues, you and he/she often don't know how what you are going through relates to what others are/have experienced. You can feel very alone. I come here to read real people's experiences and to pick and choose what is worth trying with my husband's PD. (Full disclosure: He isn't on any Parkinson's meds yet. We use diet and exercise to deal with his health issues. Looking back, where he is today has been decades in the making. We just didn't realize what all those "little things" were adding up to. Not to say we won't ever go to the meds, but they are strictly for symptom relief and not pushing the body towards a healthier state (my opinion.) This is a great group for people to share their successes and challenges! I appreciate that about it.

  • WOW never expected the uproar this thread has invoked. I use to be a moderator for a forum in the Artist community and one cardinal rule was people were not allowed to push their own products for profit on the site. This was the a rule by the owners of the forum itself. In this case it would be HealthUnlocked. I was under the impression that was a Universal practice. I belong to another health forum (Dailystrength) and there is a rule that you should never tell anyone that they should not listen to their doctor. You can suggest a change of doctor but never tell anyone the should forget about medical help and do whatever it is that you believe is better. This is my history and I thought these rules are for all forums and I am shocked that the moderators let the situation continue.

  • Theresa, you said it well. We are not physicians, and cannot recommend any treatment. That said, In my case I think that the best MDS's are coming around to realize how important exercise is. My neuro recommended LSVT BIG instead of adding more medication. I currently take rasagaline only.Although I too dislike the repetitive posts, I learned from BIG therapists that 24/7 I must consciously fight this disease by doing twice daily exercises, remembering to spread my fingers, use correct posture, take big strides when walking, etc. The poster seems to be doing the same thing. All this won't cure PD but I feel better and function better and my partner has seen a noticeable difference. However, we here are all different and at different stages. Those in more advanced stages may find my posts irrelevant and annoying. I am OK with that. I love you all!

  • I tried to cater to the physical side but I came to find that I pushed myself so hard ( to burn off the extra energy ) . That I wasn't​ looking to the mental side. Every thing is linked.

  • I believe that there is a spiritual component to living with this disease or any difficulty in life!

  • I totally agree with you Lionore. Exercise is good. My PD Neurologists just told me yesterday at my followup visit that he wants me to walk 15 minutes twice a day at least 3 times a week. Not necessarily fast walking. I just have a problem with people claiming their way is the only way to cure what is generally considered an incurable disease. And they are happy to sell you their book or their video or have you attend one of their seminars. That is solicitation. Talking about exercise is a good thing, selling products is something else. I'm disappointed that my point is being misunderstood to be that I don't appreciate other people's point of view.

  • With you there, Theresa! I have always had a problem with those that take advantage of others' vulnerabilities to sell products, programs, etc.. It's so hard to not be suspicious of anyone, even my neuro, because the medications that he either prescribed or suggested are both name brand, I.e. expensive with fancy brochures. Yet we don't have any way to measure the efficacy of alternative supplements because there is no funding to conduct statistically valid studies. Exercise is the one therapeutic intervention that costs next to nothing, but it requires us fatigued, sometimes depressed pwp's to get off the couch and move. That is why this group and similar PD FB groups are so important for me.

  • Thank you for telling me why you are here. And that is why I talk in riddles. You be honest with me and........

  • Hal do you remember the last time we spoke via mail

    Please Hal , tell your Doctor what is happening.

    You are not alone.

  • What I was doing was to find someone who.Was open to just talk. Some one who understands me and Parkinson's. I have come to find that this is more of a focus group.

  • P.S. I have talked about it with my Dr. Her decision was to cut my pramapaxol in half. It doesn't stop the study, it just makes it easier to have my theories with out having to share my thoughts. man I wish there was somebody open on this site.

  • I am open

    Talk to me by mail if you want, I can listen

    I think Hikoi is the most knowledgeable person here

    no we are not the same person

  • Fast walking, Fast talking comes to mind

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