Parkinson's Movement
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Nausea and Parkinsons

I was diagnosed with Parkinson's around three years ago and my medication is Ropinerole. Over the past few months I am experiencing nausea on a fairly regular basis. Is this fairly common?

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Hi Clifonville. There are no medications on the market that actually slowdown or stop the progression of Pd.

With this fact in mind. we then have to ask ourselves if the medication we are taking is helping with any of our symptoms. If it is not then STOP TAKING IT!

If it is, but you are suffering from serious side effects then STOP TAKING IT!

If you decide to stop taking the medication then you should tell your doctor and he/she may change it to some more beneficial medication.

John

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John,

You & I may not agree on some issues but as adults we have agreed to differ.

FINE.

Have you ever wondered why your posts attract such hostile responses? You have had years of experience of PD research over which to develop strategies which seem to work for YOU. Perhaps they work for others but as far as I am aware there is no evidence to support this. I understand how passionate one can become about promoting a course of action which seems to be a 'cure' as I am trialling one at the moment with my PD support team. I am aware however that when the trial & results are published they will apply only to me.

In your reply above you use powerful directive language 'STOP TAKING IT'.

This comes across as an imperative - an instruction. Beneath this is an invocation to inform your medical support team......no, no, no!!

This is not just a breach of professional protocol: if we seriously wish to be considered part of a team (in my case with me at the centre) then we must respect the qualifications & experience of all the members & work with them.

This is not intended to diminish your experiences but to remind you that many of those seeking help on the forum don't have your experience or confidence & are thus not in a position to make an informed decision about what to do or where to go next.

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Honeycombe, you have a sweet way of disagreeing but John's logic is simple and direct; if the costs exceed the benefits, do something else. We are fortunate in this time to have alternative medications to turn to so "Stop Taking It" is good advice and look elsewhere is as well.

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I look forward to hearing of successful alternative medications you say we have available Racer. Personally everyone I know

doing well long term is on conventional meds and the choice is limited. I wish it were different.

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Hikoi, I still go without meds after 2+ years of DX but plan to discuss meds with my neuro on my next visit in a week. Of late I notice mental slowness and a light feeling as if I am not grounded, fuzziness, some stiffness, so I pray there are meds to address those symptoms. I am vigorously exercising daily, too much probably, about 3 hours a day, which leaves less time and energy for living.

Good luck to you and to us all to find that cure.

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Racer I think you are on treatment already but as you have found Azilect has a mild effect which isn't sufficient after a while.

Now you will find there are dopamine agonists which include Ropinerole and there is carbidopa/levadopa in various forms. Any other meds just help these two types of meds work better.

It would have been good to read that exercise had reversed your symptoms or at least stopped progression but it will have been beneficial up until now and will continue to be one of the best things you can do to help control your PD.

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Hikoi, exercise has been my savior but last month I had the flu and did not exercise because of a lot of reasons which I could not control. I am back to exercising but not as intensely. My husband feels that my exeercise program competes with my ability to give him the attention he wants, he doesn't understand that I have a serious disease that I am fighting, he thinks it is nothing since I continue to do all the things I used to do and do not complain. I can't waste energy convincing him because I am busy convincing myself I can have a normal, active life, but I need to be strong and continue my program. So, Hikoi, exercise is a great help in giving me an almost normal life but the month of neglect has basically doubled my stage of PD, which is still not as bad as others but now I have to address the medications issue.

It is difficult being a woman and wife and mother and still admit deficits because everyone wants something from you and when you put your own needs out there, surprise and dismay and even guilt ensues.

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Hi Honeycombe. I am open to any criticism, both here on HU and in emails I receive on a regular basis. You say that there is no evidence to support what I am claiming. There is not enough space in which to put in all the emails and posts I receive from people I have been able to help. I don't receive very many from people I have not been able to help, but that is to be expected. If you would care to give me your email address I can send you any amount of evidence of how I have helped other people. If you want to visit my website - reverseparkinsons.net you can read some of the testimonials yourself. I do not try to fill up my website with testimonials but rather put useful information to help those who are really interested in getting better.

If you choose to claim that emails from other patients are not evidence then you are free to speak to the people concerned and let them tell you personally what has happened to them.

Many patients are under the impression that they have no say in what medication they take. I am underlining in no uncertain terms that they do have a say. If the medication does not work then DON'T TAKE IT is sensible advice. If any of the medications available were able to slow down or stop the progression of Pd. then I would not make that statement because there would be something to lose by not taking it. I don't recommend stopping any medication 'cold turkey' because it could cause harm but coming off slowly should not cause any harm, but speak to the doctor about your decision. If he insists on continuing the treatment he has no reason to do so. If medication is aimed at treating the symptom and it does not achieve that purpose then why continue to take it?

For the first two years after diagnosis I was put onto sinemet and symetrel, which did work for me, according to my neurologist's records, but he took me off both of them and put me onto eldeptyl, with no side effects. I did not come off slowly I just came off. If it had been dangerous then why would he have done that? I had even forgotten that I took those medications in the beginning, so when I wrote my book ten years later I said that I never took sinement or anything other than eldepryl.

I correspond with hundreds, if not thousands of patients throughout the world and am having a great deal of success with those who choose to believe that getting better is a viable option. Those who don't just give me a wide berth. You pay your money and you take your choice.

Nobody can get better if they think they can't. Medicine only works if the patient thinks it can.

May I wish you and everybody on this blog a very Healthy New Year!

John

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John

..... those who choose to believe that getting better is a viable option.

I presume this means symptoms improve or disappear, not get worse over time?

John if people believe they will get better and follow your programme but do not improve over time and even need to take more meds what do you say to them? How do you explain their lack of progression them?

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Hi Hikoi. First of all, complements of the season to you and everybody else. I don't know how to honestly answer your question. Up until now, the people who have committed themselves to starting the fast walking program have all started to feel better within months of starting. Some have stopped doing the walking for various reasons and have pulled out and the rest are still continuing to walk and progress.

It is a long drawn-out process. It took me 8 years to get to where I still am now. It is so slow that it is hard to measure but the fact that I never got worse is easy to recognize. As to how much better I was getting all the time was not easy to measure. I continued to take my medication for those eight years and only came off it because a neurologist told me to.

There are so many factors that come into play on this subject. If the patient has the confidence to give it a try and he/she is still able to start doing the walking then it has a good chance to work. If on the other hand the patient wants to give it a go but his/her neurologist warns against it, that patient has to have a lot of self-belief to go against the doctor's instructions. Then, in that instance the chances are that it won't work, but not in every case.

I understand the neurologists who are not convinced that this works because there is no history of it working, but that does not mean that it does not work. It is something NEW. It hasn't happened before!

What we do know is that nobody has ever got better taking medication. Nobody has got better after having DBS, they have only temporarily overcome maybe one of their symptoms, mainly the tremor, and possibly the rigidity, but the Pd. continues to get worse.

Whereas, with me and many of the other patients doing the fast walking, we all have an improvement in all of our movement symptoms and only when we stop the fast walking do our symptoms slowly start to get worse again.

We are not cured but we have a far better quality of life and a far cheaper medical bills.

I hope this gives you some answer to your question.

John

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Hello John

I do not want to use this person's plea for help to caution you about your approach but i feel i must.

Your answer has nothing to to do with the post. It gives no constructive advice. You know or should know that stopping a med all at once can cause a lot of problems. Again you are just trying to push your way of dealing with PD.

You put the the cart before the horse you should give advice in the right order. Consult Your Dr, should come first not last. You do not have the qualifications to advice some one to STOP TAKING IT. This must be a decision made by the person and their Dr. no one else.

I advise people to take control of their meds but only under the supervision of a DR.

I have no nausea so i will not comment.

John consult a person in public relations and take their advice you could use it.

You have so much to offer don't throw it away.

Find a way of giving it with out your anger and frustration getting in the way.

PLEASE John

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Hi Doney-c. Who says I am angry? In what way am I not helping this patient? As I have just said to Hikoi, nobody has ever got better taking medication! Nobody has got better after having had DBS! Many people are getting better doing FAST WALKING! No doctor is going to tell their patient to go out there and start doing fast walking because there is no history of it working. Yes, there is proof that fast walking works, as supplied by Dr Beth Fisher at the 1st World Parkinson's Congress in 2006, but strange as it may seem, not many people are aware of that fact!

I am one man, swimming against the stream, doing something that nobody else has done before and sticking to my guns.

I offer a very real alternative to taking medication and it works. Of course it goes against the grain with doctors and apparently some patients as well, but so be it!

I only advise people to stop taking medication if it is NOT WORKING! That is only common sense. I do advise them to come off it slowly, just in case of problems. My experience has been that some doctors do not like their patients to come off the medication, even if it is not working. Does that make sense to you? Bearing in mind that no medication does anything to slow down the progression of the Pd. but they all aim to hide one or two of the symptoms. That should not take weeks or months to do, and if it is not working within a reasonably short time then it is not going to work at all. Why continue to have serious side effects if the medication does not work? Yes! Change the medication and try something else but don't continue with something that does not work!

We have been led to believe that there is NO CURE FOR PD! That is correct. There is no cure! But there is something we can do to reverse the symptoms and keep them at a lower level and I will continue to tell patients about it, whatever other people have to say about it.

Have a good New Year and hopefully join the growing number of people who are turning the tables on Pd.

John

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I have read Beth Fisher's paper and it does not say anything about fast walking other than a way of measuring results of "high-intensity treadmill training"

sciencedirect.com/science/a...

Conclusions

"The findings suggest the dose-dependent benefits of exercise and that high-intensity exercise can normalize corticomotor excitability in early PD."

Your suggestion that your way is the only way is high suspect.

Your use of the word patients suggest that you are a doctor people are only patients when they see a doctor any other time they are PWP.

John i have my PD under control with approved meds and exercise. I Support your approach why can you not accept that there are other ways of dealing with Pd.

We need to encourage people to exercise.

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Hi Donny-c. For how many years have you been diagnosed? It has been 23 years since I was diagnosed and I am a great deal better now than I was then.

I do realize that we are all different and there is no guarantee that you would get the benefit that I have had, had you done the fast walking.

Just think of how much money I have saved on medication alone. You may not have to pay for your medication but we do, and it is expensive. I have also not needed to visit my neurologist more than twice in the past 13 years, and they are not cheap either.

I do recognize that the medication route is the choice of many people but I am in a much better place without it.

John

On that point, I will read Dr Fisher's report again and come back to you

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I am 62 10 years with Pd. 25 years if you count early signs.

I pay about $100.00 per month us for my meds and my insurance cost me $600.00 per month us. See my DR. 2 times a year at $50 per visit. So about $8500 per year.

I am better now than 10 years ago.

I can do any thing i want to from running 3 miles to working out every day. I have no limits to my day. I enjoy a full life.

The other day i set a new personal record in the dead lift 395 pounds (180kg).

I am one of the lucky ones i have no other health problems.

I am retired so life is easy no set things to do just enjoy life and i do.

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Hi Donny-c. I'm glad that yo are doing so well and are enjoying your life. I don't want to plead poverty but what you spend on your Pd. is more than I receive from my two Retirement annuities every year. Our currency used to be worth more than the dollar but over the past few years it has gone down so much that it is now worth less than 7 Cents and still going down.

Have a great New Year and carry on enjoying your life. I am busy completing plans to visit Australia and New Zealand at the end of January for two months.

I am also making plans to visit the USA and Canada for 3 months from July to early October, so how about getting together?

John

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could do that

see you then

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Hi nny-c. Where do you live in the USA?

John

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dallas tx

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Hi Donny-c. I think I must have asked you this before but under a different name. I don't have Dallas on my list of places at which I have been asked to talk. Dare I ask if you would like me to come there or not?

John

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Hello John

I do not want to use this person's plea for help to caution you about your approach but i feel i must.

Your answer has nothing to to do with the post. It gives no constructive advice. You know or should know that stopping a med all at once can cause a lot of problems. Again you are just trying to push your way of dealing with PD.

You put the the cart before the horse you should give advice in the right order. Consult Your Dr, should come first not last. You do not have the qualifications to advice some one to STOP TAKING IT. This must be a decision made by the person and their Dr. no one else.

I advise people to take control of their meds but only under the supervision of a DR.

I have no nausea so i will not comment.

John consult a person in public relations and take their advice you could use it.

You have so much to offer don't throw it away.

Find a way of giving it with out your anger and frustration getting in the way.

PLEASE John

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Donny-c, the empowering message in John's position is what people go away with. He is saying it is in the patient's hands to choose their path. My neuro, a very respected and renowned doctor takes John's position and encourages patients to exercise and, by the same token, is there for them should they need meds and if they are helpful he discourages nobody. Whether you exercise or do not Parkinsons is progressive as is aging. You seem to have struck the perfect balance for yourself, taking the meds that make you feel strong enough to go all out in exercise, that is admirable and you set a great example.

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The only issue i have with John is his approach to his message. I think he could does a great service to PWP. But I believe he could do a even greater service by by changing his approach from trying to tell people what to do to using his self to inspire them. A soft approach will work a lot better. We are not kids and should be informed and make our on decisions.

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donny-c, whether or not JohnPepper had or has Parkinsons seems irrelevant but I like his message to take control and move. You obviously put out the same message in a much more credible situation and I'm sure everyone is grateful for your input and encouragement. Keep it up!

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Yes, I experience nausea. It is a matter of balancing the advantages and side effects of medication. My medication makes me feel upbeat all the time. I really value that & happy to give up my beloved coffee as a tradeoff & put up with nausea. It is a personal choice.

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Thanks vhardiman!

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Cliftonville

I started out on Selegiline two pills am and noon with food

next was titrated up to i gram reprinieole three times a day

finally added Senemet 25/100. take it four times a day at 5 :00am. 11:00am, 5:00pm and 11:"00pm.....Fast one hour before and after.

reprinerole at 6:00am 12noon 6:00 pm.

Never have had a stomach problem............perhaps you might try a fast prior to taking pill? In other words explore managing content of stomach when taking pill?

BillDavid

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Have been on a similar make up of pills. Just Sinemet now. Definitely have to take on a empty stoumach!

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I was prescribed Ropinerole when diagnosed 4 years ago but could not tolerate the nausea. I am now happily taking Sinemet CR and Azilect. We are clearly all different. Good luck!

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Hi there,

I have been dxd for 12 yrs now & I am doing really well compared with many others I meet &/or with whom I am in contact online. My only constant med during this time has been Ropinirole. At present I take 1x8mg slow release each morning. I was warned of the possible nausea from the start & prescribed Omeprazole.

If you would like help from the community it would be useful for us to have some basic information:

gender

age now

age at dx (diagnosis)

the country in which you live (I'm UK)

the drugs you are taking - for all conditions not just PD

Out of interest I still get occasional dizzy spells, I describe as my 'gyroscope' failing. The ground seems to move under my feet in waves & I need support to stop myself falling. Medical opinion is that it is probably not caused by PD (possibly labyrinthitis).

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My name is Mark I take 6mg per day of ropinerole for the last 5 years. At the very beginning I experienced nausea but I'm ok now. My problem it makes me obsess over things...very disturbing!

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Sleepless, this can develop into life style changing side effect. Have you consulted your clinicians about this and have you read the literature on it?

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I had a nice soup today Lentil and Bacon by Baxter. Looking foreward to Christmas and making a pig of myself. albert

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Hi Mark, I agree was on Ropinerole for two years - changed my way of thinking dramatically. I would wake up early and only think about my hobbies, mainly fishing and photography. Family and work came second - not the way I prefer to roll. Just on Sinemet now, much better overall back to normal in that sense, but the positive effects of the med only lasts 2-3 hours so have to take 5-6 times a day!

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My husband experienced nausea on the original Ropinerole, but changing to the slow release version stopped all that.

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Cliftonville

Nausea is common with Ropinerole when first starting it. Did your nausea start when you began Ropinerole? Domperidone works well until your body adjusts. Try taking Ropinerole with food, you don't have to avoid protein with it. The long acting med is much easier to tolerate.

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Thanks Hikoi.

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I had extreme nausea when I started ropinerole (45 lb loss in 4 mo) but now about 8 mos in I'm up to 24mg and no more nausea. It does take my appetite but the nausea ended after 4-5 mos and interestingly increasing the dose did not increase the nausea.

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Yes, it is common, and it is not comfortable to say the least. I used to calm my stomach with ginger tea or mint. However, it did improve my symptoms so I went along with it. After 2 years I retired and moved to another state and started seeing another neurologist. she started me on carbo/levo and because there was such an improvement I thought I could drop the ropinerole. No nausea, and I was still doing good, but not as good.

She then replaced the ropinerole to Neupro 24hr patch and I am pretty much symptom free without the nausea. For me, the dopamine agonist works well with the carbo/levo.

Also, I cannot overstate the benefits occupational and physical therapy (intense therapy: you have to work hard).

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Per the "Medications" publication from National Parkinson's Foundation:

Ropinirole: Potential side effects - "Low blood pressure, nausea, leg swelling and discoloration, confusion, sleep attacks, compulsive behaviors.

There are other drugs to use. I started one day on Ropinirole (Requip) and experienced the nausea. Told my doctor the next day and he changed my meds.

Presently on: Azilect - Neupro - Sinemet and doing fine with no nausea.

Charsie

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actually, i believe it is. and it can come from a variety of things....the med, reflux (common in PD), lack of digestive enzymes, slow motility of food in gut, rapid breathing resulting in hyperventilation, ad nauseum (no pun intended).

i don't know Ropinerole....look up the side effects and see if it can be taken with food. Protein counters the action of c/l hence the directions to take it 1/2 hr.before or after food or abstain from protein if you must take it at mealtime. i don't know what to do with regard to ER which is what we use because there is always some c/l in the system with that.

we use a good, all purpose digestive enzyme and if my husband doesn't use it....nausea after.

exercise and fiber help motility but even with that, we have found l-glutamine has helped the most keep his gut in shape. no problem with constipation anymore.

hyperventilation signals to the body that something is dangerous and better get running or prepare to fight. vomiting and defecation are too primal tools to deter the enemy so the body prepares. for my husband, this means bad news....stock market will send him soaring....bad news from the kids, violent stuff on tv....sousa march music....anything that stirs the emotions.

we have used everything known to man...DGL, Ginger Trips (very good), cider vinegar straight up, seasick wrist band (works for me on flights), breathing into a hyperventilation mask (hard to find). not the type to do visualization like LaMaze. When he took the BIG and LOUD program, they thought the work on his voice would help his breathing and i think it has helped him get control of his breath. oddly, no one seems to comment on the effect of PD on the breathing, i.e., voice until you get to B&L.

hope this helps. no doctor ever told us any of this except dont eat protein when you take c/l. the rest was learned browsing.

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Have been on medication for Parkinson's disease since 2004 and I have to eat some crackers or toast before I take my medicines ( mirapex and stalevo) or I am nauseas

all day. As long as I eat something, I am ok.

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I was diagnosed with PD last December at Edgware hospital London and prescribe Ropinirole. I have felt sick ,swollen legs and binge eating. Other then that its not to bad. I still live like I used to do, cut down on the beer, I do Tai chi, swimming and dancing every week. Also go and watch football, a bit sad I know but don't let it get you down. albert

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Hikoi, false hope is better than no hope and movement is beneficial to harmless.

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I can't be doing with false hope but I like your phrase racer, being "optimistically real."

Colleen HH wrote a thought provoking blog on Hope titled "Is Having Hope Hopeless"

I just revisited it and here is an excerpt.

.....Hope is one of those words, when I apply to me “The Patient”, I cannot get along with.

To be precise this is what the Oxford D says about it :

'A feeling of expectation and desire for a particular thing to happen'

And straight away the problem shouts at me.... It's too flimsy, too passive, too emotional. Nothing wrong with that in the context, let's say, of 'hopeless romantic ' but when it's in reference to my life, my future, my wellbeing 'hope' isn't good enough. Not good enough for me. I want strong action, immediate results. Let's be clear, hoping for a cure doesn't fill me with confidence.

Hope doesn't keep me well, hope doesn't inspire me.

So let's park the word and the sentiment and grab to me what makes a difference between coping and a life.

I am a firm believer in taking responsibility for my health and wellbeing. A diagnoses such as Parkinson's disease, by it's nature degenerative, gives us forewarning .....

And what of hope? Well if you have it you have one piece of a jigsaw I don't. Hope is not hopeless if you believe in it, but it's not hopeless if you don't.

Full blog here:

parkinsonsmovement.com/wp-c...

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Hi Hikoi. I have spent a week trying to find where I read about GDNF being produced in the brain when we do fast walking. I cannot find it anywhere. That does not mean that it does not exist. I did not suck it out of my thumb.

When I first read Dr Fisher's report it had to have come from that. In 2007 I tried to find that report on the website on which I had first found her report, but I could not download that anymore. Since then I have been able to get her report again, but is it the same as the original was? I suspect not.

The closest it got to fast walking is the following:-

To our knowledge, this is the first study to show that people with PD can engage in very high levels of exercise intensity—up to 13.3 METS—and the first to report improvement in both measures of brain and behavior in people with PD as the

result of high-intensity exercise.

The 'high-intensity' gives a clue to what I took from the first report. I have no way of proving or disproving what I have said here.

The facts are that I got that information from somewhere. I also got the information that walking on rough ground was better than walking on a treadmill.

Also, the fact is that with me, when I did gym for 90 minutes every day, 6 days of the week, my condition continued to get worse. When I started to do the fast walking, my condition improved within 5 months. The same has happened to many other people since then. That is enough to show that what I am saying works.

Nobody is going to spend a fortune on doing a double blind study to prove that fast walking reverses many of the symptoms of Pd, because there is no money to be made from getting patients to do fast walking. It is all about money, not about helping Pd patients to get better.

You may be interested to know that yesterday I was unable to get a Pd patient to walk properly. That was the first time this has happened. He is very far down the track with his Pd, but that has not prevented people who were already in a wheelchair from walking properly. He just did not understand how to concentrate on lifting his legs up, one at a time, and planting the heel on the ground in front of him. He managed it for or a few steps but then lost concentration and started to shuffle.

That was my first failure, which goes to show that it does not work for everybody. That may make you feel better!

I am still going to try to find if there is somewhere else I can connect fast walking with GDNF.

John

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This is such a depressing condition at times John, I love your positive attitude - fast walking seems like definitely worth a try!

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Hi Cliftonville. Thanks! Follow the rules of fast walking and see what happens!

Good Luck!

John

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I've been taking Levodopa for about 7 years and just recently been experiencing nausea. Now the strange thing is that this always occurs during about the last half an hour before the next dose is due. I don't believe this normal. Surely the nausea is a consequence / side effect of taking levodopa not of not taking it ?

Anybody else have this happen to them?

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