Blog about getting off Sinemet
 

This
 

guy lives not far from my place. Soooooo much to read, sooo little time. Thanks Fiona :)

Coleman is a joke
 

Amongst our local parkinsons community.
He should be ashamed of himself but unfortunately he's still touting for business.
He's trying to make money with his "Pathways" program on recovering from P.D. or in his case even better than that, one of the parkinson plus syndromes.
Every now and then his name bobs up and I'm sorry if I come across as rude but the man in my opinion is despicable.

Made it up - thank you and please explain. I'm not saying he's wrong or right - I just don't know...why is he considered a joke and a despicble person? In terms of making money from Parkinson's - face it, everybody else we come in contact with find us a highly lucrative market also, so that alone can't be it...
so is it that people think his methods don't work or wassup?

two-cents worth
 

Welllll...I found the links in this thread interesting and comments were thought provoking. I believe there is a path out of this black hole we have all found ourselves in, and very possibly more than one.

I have yet to meet a person who purposed a solution to any serious/controversial problem who did not come under some criticism or condemnation for what they had to say. Maybe that's why some who do find a non main stream way out don't come back and talk about their experience. Fear of criticism. As for making a few bucks off what you have to offer, we sometimes forget that there are expenses associated with running a website, mailing out info and ones time and energy are also worth something. Sharing for free is a nice concept, but the cost of gas continues to rise.

The closer I look at my PD...the odder everything about me and my life looks. I think we are only incurable if we believe we are incurable.

Hi Fiona and Rosebud,

Coleman has been trying to gain exposure here amongst PWP for a few years now.
When questioned about who made his diagnosis, what medication he took, whether he ever gained relief from it etc he had no comment.
He can't come up with any concrete evidence that he ever had PD let alone (as he claims) a Parkinson Plus syndrome which as we all know has a poorer prognosis than what most of us reading this have.
Anyway just my two cents worth.
I'm normally very cautious about what I print on this site for fear of critiscism but I feel quite strongly about him preying on our diagnosis so if any of you still wish to try his methods go for it.

going off sinemet
 

My strongest advice, is to establish a relationship with your neuro.....where he /she trusts your judgement. i tried with my first neuro of 12 years - he was resistant to that much talk - he was on the clock; then went to one that is always recommended. I come in, he says 'what's new with GDNF?" and we just talk. He trusts me to fine tune my own meds, [modern ones], he doesn't scold me - it's conversational -and he is open to alternatives - especially curcumin at this point in time in his neuro life.

He always says because he is bound to , that i'm the perfect candidate for DBS. At our last appointment, he just pointed both his forefingers to the top of his head and made a funny face.

Anyhow, the point is, it seems to me if one is talking high amounts, a doctor should be available about it.

IMHO, this guy on the blog is charging too much for it to be real, and isn't interested in PD.

paula

managed
 

too squeeze in some research time here. There is nothing from that site we cannot learn about from Neuro Talk, wikapedia, or google. The difference is cost.

Short on specifics. Short on substance. The sugar question....ambiguous....

Short on sound research data neccessary to have me invest in. And I could go on and on. All in all a disapointment.

At the bottom of the page of this URL you will see the cost of his seminars
http://parkinsonsrecovery.com/jumpstart.html

If he had pd would he not want to help others with pd instead of making it into some slick business adventure? Notice the seminar start time at 7 PM the day before. Is that for cocktails? After fighting pd symptoms all day how realistic would this be? I realize what a negative comment I just made...........it is common to have a meet and greet and hand out the agenda the evening prior to the seminar. Send mine to my room please!

How many people with pd can afford this high end stuff. I sent in over $800.00 medical expenses and got reimbursed $242.00. Big whoop. I agree he has valid information but if we dig we can find most his stuff through others and on the Internet.

Thanks for the post Fiona, it is always good to read what is available. If he truly helps even one person with pd that is nothing to be sneered at. The difference between this individual and myself is compassion. If I cured myself of pd I would want to help others by sharing information. The thought of charging for it would not not enter my mind.

Ok, people, finally got a chance to peruse this in a little more detail. I don't know why you guys are so upset. It seems to me that most of the advice is generally in the right direction - true, you could get a lot of it from your own internet research, but a lot of people with PD are totally panicked by their diagnosis, don't have the time or the courage or the knowhow to do that alone, and the encouragment of someone else can be a real support when you're trying to navigate the PD seas. I mean these people offer to research any question you ask them about PD for free - how common is that??

John Coleman - I coulnd't find my way back to the original description about him, but I think he never took PD meds, but people he worked with did, and he seemed to be specific about that. In terms of not revealing whether or not his diagnosis was confirmed, who here has a confirmed diagnosis not just based on ruling other things out and the fact that you respond to PD meds? I never have gotten a firmer answer than that. His book is only $15 or whatever - considering what most of us fork out on CoQ10 alone, hardly very much money.

And the coaching service and seminars - well, yeah, they cost something - but I took a yoga course in the past year in NYC for a few days and that was almost as much. Would you expect your doctor or your masseuse or your trainer at the gym to work for free, assuming one could afford any of these? And none of them are offering to try and guide you towards a recovery from PD. The coaching assistance thing - well, I think that might be very helpful for some people. And the cost - well, if you hired a personal assistant for ten hours weekly at the ridiculous cost of $10 an hour, that would quickly add up, too....which doesn't mean that any of us could afford this. And we can debate the merits of whether or not people should get paid to help others, but can you imagine most of the people you encounter in your doctor's office not getting paid?

I feel that the rage towards this site is a little misplaced. It's not even comparable by any stretch with the profit markup on our medications...and those are keeping us alive but not leading towards a goal of recovery.

I found the advice and thinking on this site rather mild, but acceptable - but perhaps threatening because if people dare talk about recovery, so many of us (and I include myself) are primed to want to see a vivid and sudden transformation, so if it's more long-term and diffuse than that, we say, oh, it doesn't work, and we're angry. But that's because of the shape of our own expectations, and maybe doesn't look at the context in which they offer their perspective. Frankly, I think that ANYONE talking about serious reduction in PD meds is very rare indeed, and that alone makes this interesting. The approach embodied in this website might not be for everybody, but I think they mean very well, and I don't think they're just placating their shareholders in how they have structured their services.

Thanks Fiona
 

I spent a bit of time yesterday looking at this website, and found it quite uplifting. I have decided that if I have to live with PD or whatever this dis-ease is, I may as well give it my best shot by being as healthy as I can be and let the meds fall away if not required. We are whole beings and to think that any single part of us can be separated from the rest of the package is just silliness. Yet that is the basic view of western medicine. Soon there will be a different specialist to treat our left foot from the one that only treats right feet! I read through the pkg for the seminar or whatever, and found it very typical of other seminars I've attended. The $800. covers you and your caregiver, several meals, hotel accomodation and all the workshops. The pricey item on the menu is the nutrition counselling which is not live, but telephone (you'd think they'd use a computer hook up) Still for an hour of individual help...plus another 15 minutes (and I'm sure you do your questionairre first, on your own time) I am going to investigate further because everything thats being offered here is of value in my opinion.

I'll post again when I know more.

sales tactics
 

Hi Fiona,

I'm not upset - you posted the link and opinions were expressed - nothing more really. This man is claiming he cured his pd - that's almost a miracle and he has no proof that it would work with anyone else. He is charging more than the average disabled pwp can afford.

Regarding our meds - I am grateful to have sinemet. I've been told from the very beginning that it would turn against me. It was clearly laid out. I hold researchers and bio techs responsible for not coming up with more innovative treatments - for competing and withholding - I wouldn't put anything past them.

But if I didn't have sinemet - i'd be helpless. I'm not going to jeopardize the fine tuning and balance i have right now by taking various powders and formulas that claim to replace sinemet. i'm open to whatever works and appreciate the information that comes into this forum. I hope like hell someone finds something that works. But i"m too advanced to play around with this balance. At 20 yrs of pd, I'm still functional.

This isn't a contest - modern vs traditional. All avenues should be explored. I've come around to thinking that stress is #1 cause of illness combined with poor nutrition and environmental toxins. But I can't afford to pay $800 over the internet looking for a miracle cure and think his method of getting business is at the very least tacky, and quite possibly, in scientific terms, is no more than a clinical trial would be - with the participants paying for it.

It's people I don't trust. THe scientific method, when done correctly and honestly, is the best system we've got to work with. Data is a must, and people shouldn't have to pay for it. I can't afford to run out and buy all the things recommended on this forum. I read, follow the info, and when something comes up that I feel is right, I'll give it a stab.

Disagreement is not the same as being upset. If the guy comes up with a cure, I'll be among those in line for his treatment. Someone else can pay the $800 to find out what it is.

I am not upset at you at all Fiona, one person's trash is another's treasure, or something like that.

paula

Hey Paula - no, I'm with you on many points. And I should have been more specific about the upset part - trying not to single anyone out, and winding up with people feeling singled out! oh, well.

It's an enormously personal decision about whether to or not to take whatever meds, and I know a huge variety of factors come into play. I don't blame others for making other choices for themselves. But is it a contest between mainstream and alternative? Well, not a contest, but try telling most neuros that you want to try something different - not such an easy task to mediate between all these things for yourself, and the alternative is still fighting to be acknowledged because if no one can make a big profit from it, then studies aren't likely to be funded. I mean, we all know this, right? I know there are some exceptions like exercise studies and the like...

But about the clinical studies, of course part of me feels that you're right, but when you consider the recent data that the clinical studies funded by the pharmaceutical companies are statistically five times as likely to have results favoring the company's product....well, I don't know how to evaluate all this data.

But if someone offers what they think is a curative process, you have a right to pursue it or not, to accept their explanations or not. If you don't like something without clinical studies, great, don't take it on. But someone else may have another way of looking at it, and other priorities...

Fiona, I was a little hasty with my reply as I have had a chance to look around the website you posted and there is lots of good information. I was cranky this morning because I had a dentist appointment and also felt ripped off that I was only reimbursed less than a quarter of my medical expenses when I have coverage with the Premium Extended Medical Plan. If they can find a way to get out of covering treatments and drugs that are not generic you pay through the nose. It is not very encouraging. As you brought up we don't balk at the cost of supplements, yoga etc. I was not upset, maybe judgmental, because of the amount of money I do spend on a ongoing basis. I know that there are many who could not afford what I have the luxury of spending. It is those that I feel bad for. Once again thanks for the post.

I hadn't even thought of any sort of naturopathic type treatments for my dad's PD , so i liked the info if just for that reason.

But just getting parents & other family members to look at alternative health stuff is a challenge anyway. LOL

They think MD's know everything :(
sigh

Getting off Sinemet
 

My experience with Sinemet withdrawal

This is one subject about which I cannot remain silent. As I’ve mentioned in the past, I am 51 years old and have had PD approx. 20 years, not correctly dx’d until 17 years ago.

A while back, already in a pretty advanced state of PD, I was becoming increasingly desperate. At that time, the DBS procedure had not yet been approved by the FDA. I went through the lengthy protocol process to be approved as a “good candidate” for the surgery. Plenty of tests, doctor visits and weeks later, I was well on my way to being approved as an excellent candidate. My surgery date was even set and I was only weeks away from the DBS procedure with only one doctor left to approve my candidacy. (This was a type of peer review, like a second opinion). He and his senior colleague examined me and ran tests for 4 hours! Prior to that day, the longest doctor appointment I had with any neurologist was approx 30 minutes.

After spending half a day with me, they each separately concluded that I probably did NOT have PD, and RECOMMENDED AGAINST the DBS procedure for me. They believed the symptoms were caused by STRESS. I did experience the first PD-like symptoms during an extremely stressful period of my life. I was in a failing marriage, with a 2-year-old baby, working in a business approaching bankruptcy, my career in question, and aging parents to consider. So, the doctors concluded that my PD-like symptoms were stress-related, and that I was misdiagnosed. Furthermore, they felt that I had then compounded my health problems by becoming addicted to Sinemet. They recommended that I start a very gradual detox plan. Then, after detoxing, if there were any “real” underlying problem, they felt it would come to the surface, no longer being “masked” by all the med’s. After careful deliberation, I agreed, recognizing that I could always go back to the DBS some time in the future.

I had mixed emotions, of course. On the one hand I was disappointed. I was no longer only weeks away from “the fix” to my problem. On the other hand, maybe I didn’t have PD at all. Maybe at the end of a “long and difficult” withdrawal process there was a CHANCE at a normal life!

By the way, these doctors who spent half a day with me are very highly regarded. They work in one of the most prestigious hospitals in NYC. They are not only neurologists, not only movement disorder specialists, but “Parkinsonists!” They spend 100% of their time working solely on Parkinson’s patients and Parkinson’s Disease, Parkinson’s Syndrome, Parkinson’s Plus, Parkinsonism, or any other neurological problem that had Parkinson’s in its name!

It would take too long for me to describe all the symptoms, lack of symptoms and other oddities in my condition, which led them to the conclusion that I did not have PD. I’m afraid I don’t have enough quality “on” time, patience or energy to explain it all right now. I will mention one example in just a few paragraphs. Also, since we are all different from one another, my personal experience with PD is unique to me, as your experiences are to you. We experience different symptoms, speed of progression, response to various meds, side effects to these meds, and so on. So the reasons for their diagnoses are different for each patient.

Suffice it to say, they made a very compelling argument. It was compelling enough for me to make the decision to take their advice. I began my journey toward what I hoped would be a normal, healthy life. Fortunately, I was young, very athletic, and somewhat of a health-nut. I have taken pretty good care of myself and didn’t abuse my body. I felt confident that I would come out the other end of this nightmare a healthy, happy person.

The detox process was very painful, physically and emotionally. I slowly titrated my daily Sinemet intake down from a one-time high of 2400 mgs (only at this peak for a few months; more typically at approx. 1300-1500 mgs.) down to 300 mgs! I continued taking several other add-on meds…. agonists, for example.

At 300 mgs I was miserable and suffering terribly…appearing much as you would expect an advanced stage PD patient to appear on only 300 mgs of Sinemet each day. I spent on average 20 hours each day in the “off” state, needing full-time attention. I could not walk. I could not feed myself. I could not get off the bed or out of a chair without help…a lot of help. I was helpless, sitting in front of the TV all day with my nurse’s -aid by my side.

The four remaining hours of the day, I was “on.” These periods usually occurred shortly after taking one of my Sinemet doses, as you would expect. It gave me just enough time to bathe, change my clothes, eat and exercise. During this “on” time I was symptom-free and side effect free: no dyskinesias whatsoever. I should mention that this total of four hours was not a solid block of time. It was broken up into roughly ½ hour- to 1½ hour- periods at a time, maybe 3 or 4 times in a 24-hour cycle. It was a living nightmare!

Over time, I have to admit, that I did notice very small changes in my condition. I believed I was witnessing the signs of improvement. For example, (I told you I’d give you one!) when I was in the “off” state, and could barely move, my aid would stand me up. She did most of the work. Painfully and slowly, I would shuffle to an open space. Once in a while, standing there on my own, concentrating extremely hard, I would suddenly begin to RUN…SPRINT, actually! This would only last for several seconds. I think my record was approx. 20 seconds. Nevertheless, how could this be? Either I had a dopamine deficiency or I didn’t, right? Why, on those occasions, was I able to run when I could not get up and walk on my own? This is just one example of the strange inconsistencies that gave me hope. (I later learned that many of us have these peculiar, inexplicable, events.)


I remained on this program for several years, desperately hanging on to the few anomalies and miniscule improvements that made me think I might not have PD. Determined as I was, the minor changes eventually were overshadowed by the suffering. I could not take the punishment any longer. I could not take the next step down to 200 mgs. Even the doctors admitted that I should have seen a lot more improvement by then, and that, at 300 mgs, I probably was no longer strongly addicted to Sinemet.

I never saw any real, tangible benefits from this detox process. There was no further explanation. After all the sacrifices my family and I made going down this path, it was time to accept that I had PD… or something that behaved almost exactly like it. It really didn’t matter what label you put on it. I have a PD-like problem which responds well to the PD meds.

That was a few years ago. Today, under the care of a different doctor, I am receiving the “accepted” treatments for PD. I was prescribed the typical cocktail of drugs that we are all familiar with. As expected, I responded to the meds as I had in the past: symptom relief, wild dyskinesias, “on/off” syndrome, and “freezing” throughout the day. My quality of life is quite poor, but compared to the previous few years, I was much better off, even with all the symptoms and side effects in full-bloom. Now, with a whole new world of treatments and potential future options, I am considering my future weapons to fight this nasty monster. In the meantime, I continue to keep in tip-top shape, pray and try to make the best of a bad situation, one day at a time.

This was just my own personal experience with Sinemet withdrawal. It’s something to think about. Your results may be different, but I wanted to share my experience with you because I think there aren’t too many of us who have gone through this process. I thought you should hear from at least one. This took me 2 days to write…sorry for the delay. I hope it helps in some way.

Best of luck, whatever you decide.

I am tempted to salute your bravery kk13, but...
 

...as I tell those who tell me how brave I am, if I could outrun this SOB I'd already be gone. :) So, I will salute your toughness instead.

One thing that anyone wanting to reduce the drugs may want to know - the mucuna definitely could have a place in managing that. Be aware that you might be exchanging one drug for another, but I don't think so. But in my experiments I have caught myself cutting back far too quickly. For example, I stopped 24 mg of Requip cold without changing the Sinemet dosage. After two days of that I noticed restless legs that night. I gave myself a good talking to and am on a more reasonable titration plan now.

2400 mg of Sinemet? Whew! You are one tough hombre kk13.

Thanks...
 

...for the kind words, Reverett123. I'm not so tough...what choice do we have? Like they say (whoever "they" are): Parkinson's ain't for sissies!

By the way, just curious and way off-topic,What makes a member a junior member or a senior member? I'm not looking for a promotion, just wondering what that's all about.

Thanks again for your response.

Senior members are better looking
 

But seriously....

I think it is automatic and either based on time since you registered or number of posts.

kk13, whoah, what a story. thank you so much for taking the time and making the effort to tell us about your ordeal. And yes, I have heard a couple of similar stories before - I so wish I had heard them before I launched myself into this whole levodopa therapy.

It does feel like a mountain that any of us are facing with this either idiopathic or secondary drug-induced Parkinsonism or whatever the true nature of this beast is. However, I am still hopeful that there are things that haven't been tried and things that could help. I am with Rick on the mucuna thing - just a month or two now, and it's hard to explain how very much better things are for me and how I think this is leading to a somewhat restorative path, wherein other things could now start to help that didn't before. I am just so devastated that it is not routinely part of the priority ways to address PD, and don't understand the lack of interest in it - to me, it is so clearly superior...although still a drug, I know, but a drug and something else...

God bless you, kk13, for putting your life back together. I wish you the very best, and hope that things may improve for you. You are very strong to have endured what you have and to be willing to share it with us.
Fiona

Thanks for your very in-depth story kk13. When I read it I knew I wanted to reply but your story hit too close to home. I can relate to many of the things you describe and felt. To this day I don't know if I have pd. I am afraid I will go through dopamine withdrawal which as you know ain't easy and god knows how long it will take, all for naught. As I read your story I asked myself, is this me? Like you I am quite different than others that I have met or talked to with pd. I still have a sense of smell, total upper dexterity, my arm swings (it didn't when I was diagnosed). At the same time I do have some pd like symptoms. How do I figure out if it is drug induced Parkinson-ism? What is it like?

Reducing my dopamine helped a lot, especially with the pain. I thought I was on a good run but last week was hell. I couldn't get relaxed movement-wise on or off meds. I try not to get dis-encouraged. I have good medical people that question my diagnosis or think something else is going on that have spent a lot more time with me than the 3 neurologists who dismiss all my oddities. All 3 of these trained neuro guys said that my facial numbness was part of having pd. Without getting out of their chairs and examining me. It is going away now I am being treated for the pinched nerve in my neck. How ridiculous is that?

Last week I asked my neuro why I had heat radiation in my legs before they go completely numb, I have to crouch or sit down. I have a bruise on my foot that has faded some but has not gone away and my toes go blue. He gonged my knees with the reflex hammer and they jumped so I'm just fine. In all fairness he did give me a nerve conduction test a couple of months ago and I was deemed fine. I think gonging my knees was his way of playing with me. I think I have a circulation problem.

What worries me the most is my in-activity, my life is on hold. I'm waiting for my legs to relax so I can walk and now I have muscle atrophy in my legs. I know "do I want some cheese to go with my whine"

You ended your post "whatever you decide". Many days I wonder should I be reducing my drugs or increasing them? I am going to try the right kind of Mucuna because I can't handle the side effects of Sinemet/L-dopa. For starters they have dye in them to make them yellow, blue, pink. Probably to help folks distinguish one pill from another. Why can't we have a healthy choice?

Thanks for posting your story. Like you said there are not many who have gone through the process. I really appreciated it.

Bonnie

You Are Welcome, Bonnie
 

I am very glad you found this information useful, or in any way helpful in your decision-making. When you live through an experience like that, you can't help but wonder, "Why did the 'universe' put me through all that?" It's a big question that I'm sure I'll never learn the answer to. But knowing that the story helped somebody else makes you feel like it served some purpose.

Good luck, and keep us posted.

Hi my friends
Can the low dose of l-dopa produce dementia problem?
My father has parkinson and i give him low dose of l-dopa. Nowdays his most problematic situation is the dementia... and memory problem.
Somewhere i read that low levels of domanine can produce mental problems.

thank you

so much to say..
 

Firstly, thank you kk13...I know I couldn't do what you did. I also have a strange version of this disease, and was diagnosed after an extremely stressful time in my life. My current Neuro thought I was just a nut,or possibly a problem patient when he first met me. 3 years later, he looks forward to my visits and listens to me. I told him I did not expect him to have all the answers...in fact I was not even looking for him to say, I did not have PD. I wanted someone to listen to me, and help me solve my issues/problems. Once he realized I did not expect him to have Superman like insights, or solutions he totally changed his attitude. Suddenly he was using the word "WE" rather than "YOU" or "I". He knows I am not a dummy, or a problem atttitude. He is my partner.

No-one ever asked me about the circumstances of my life before I was diagnosed. They were the most stressful of my life, I'd just had a baby, and
4 days later my husband announced he was "in love" with another woman and did not want us. He was packed and gone without telling me he was leaving, so I had no idea until a whole day had passed that he was gone (I went to check if any clothes or personal items were missing)- yes all cleaned out. I found my torn picture in the garbage can along with a few small gifts I had given him. Did I mention it was 3 weeks before Christmas?
I was worried sick. Not only had my life ended, it had disappeared with no warning,no explanation. His family was next to useless. I lived through two years of hell after that. He was a complete idiot...actually he was extremely immature. One councillor we both saw (seperatley) said...."let me give you a piece of advice: dump this guy and find yourself a man". Getting rid of him and all the memories etc was a three year process. I really loved him. Now all these years later, I see him for the incredibly selfish, self centered male he was (is) and he's married to someone else now, and she's a real B**** to live with. There is justice in the Universe. She is not the same woman he left me for. That's another story.

After I knew I had to get rid of him it was like getting rid of cancer. But I was determined. I went to group councilling, made several bad choices out of anger and just generally lived my life like I had a death wish. The PD symptoms showed up just as I was pulling my life together. In my mind there is no doubt that there is a connection between them.

Yes, I think I have a stress disorder. I think that taking l-dopa set me up for drug induced PD. I have more to say on this subject too, but it will have to wait until tomorrow...I need to pack it in for tonight. Part II tomorrrow....J

Thank you, all of you, so much for your stories...somehow, as difficult as they all are - Rosebud, OMG, I'm literally still crying as I write this - but still somehow it makes me more hopeful for all of us, and very much you guys included. Just the fact that your humanity is so intact somehow gives me hope in the human spirit, and a sense of the individual strength of each of you that ultimately will find a way. These are not the lives we thought we would have, but they are meaningful and resonant, and their individual truths will be revealed when they can be, I guess... And I am convinced there is a healing path for each of us.

Yiannakis, sorry to hear about your dad. Not sure how to answer your question, and each person is so individual, but let me say that I do think it is possible that altering a person's dopamine (which many things can do) could disturb or change a person's energy field significantly enough to produce this result. Not sure what your options are exactly, but I think you do have some...

Lastly about the blog - well, I'm liking the daily PD encouragement words of wisdom they send you if you sign up for it....I think there is a lot of good to this site.

From the "Parkinsons Recovery" web site: Intention Workshop -
Identify and address unconscious reasons why you may not want to feel better and find relief from symptoms. :confused: :rolleyes: Sign me up for this seminar!!!!!! I cant wait to find out why I unconsciously want to move slow, and shake uncontrolllably.

Part II -as promised....t
 

Telling my story is very cathartic: maybe we should all do it.

Anyway..It took me 3 days to locate him after he walked out. He finally went to talk to his friend and his friend got him to contact me. He never apologized, but he did ask me if I wanted to meet this woman...I said yes...which the counsellor thought was incredible, but in my mind she was probably, younger,prettier,smarter and of course I just had a baby and you know how sexy you feel after that...(not) -for the benefit of any males who may be reading this. So I figured I had nothing to lose by meeting her. It was the best thing I ever did. She was plain, worked as a clerk in his office, skinny, and hadn't had a date since high school (she was in her 30's). She drooled over him and acted like she was 14. She also answered all my questions. How dumb was that! I quickly realized he had traded down. She had him on a "hot lunch" program and she figured out eventually what was going on in his head....nothing!

He did move home again, but was still seeing her, so I threw him out for the last time in February. His mommy took him in. After that I moved and had to get myself reorganized as I had left my job before the baby. I had all sorts of financial problems, was on antidepressants to control the crying which was spontaneous, and constant. I did lose about 30 lbs and looked really hot though. Visine really does take the red out. That didn't work in my favor because I picked up some pretty scary men in retrospect. I managed to get myself into a retraining program and finally got a good job and my life settled somewhat. Then I dated a guy for two years whose first wife had died of cancer. He was crazy too, but I didn't see it then. I thank God every day that I did not move in with him or worse, marry him. Hindsight is the most amazing thing. So now I was a single mom with very few assetts and lots of liabilities. I was doing really well at work, and was offered a job with a much larger company for considerably more money and holidays. It also came with more responsibility...S-T-R-E-S-S. This is where the first signs of tremor show up... Oh yes, this was about the time the two year relationship went south too. I have to say, I sure learned alot over those few years. One thing that has always intrigued me tho, there is no PD in my family that I know of at all, but My ex husbands grandmother had Parkinson's...she died of complications related to the disease. My ex mother-in-law told me when she told her mother that I had been dx'd with PD, her mother just cried.

Well there is lots more to tell, but best I move on. The whole story won't be over until it's over. Thank you to all who care or have similar stories. I'll be in the foyer if you have any questions:D

yiannakas
 

Hi Yiannakas,
I doubt that treatment with a low level of L-Dopa will actually cause dementia. About half of people with PD develop dementia at some stage. If dementia occurs, it tends to develop in older people with PD (aged over 70). See http://www.patient.co.uk/showdoc/23068879/
L-dopa will only treat the symptoms of Parkinson's, and I don't know of a good treatment for dementia. The drug may even unmask dementia that had not been previously noticed. See http://adam.about.com/reports/000051_6.htm
Sorry I can't be of more help but there is not much you can do to treat dementia, which is probably why you have not had any other replies to your question.
Best wishes
Ron

I think Ron is right (as he pretty much always is - thanks, Ron, for all your wisdom and generosity over the years) - a low dose of Sinemet probably alone would not cause dementia. There can be many things - my dad was way not himself for months after his bypass surgery -but then he also lost his job due to outsourcing shortly before, and was devastated - which I think contributed a lot to his confusion and disorientation. So many things -emotional and otherwise - affect a person's thinking - but chances are the smaller beginning doses of Sinemet would not do it alone..

you might want to look here
 

Some pretty dramatic claims

http://www.sciencedaily.com/releases...0109091102.htm

thank you Ron!
My father started treatment with the papimi machine (see papimi.gr), it is said that it has anti-inflammatory properties. It produces magnetic pulses.
So far we saw improvement on prostate.

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