An interesting article from Dec 2014 edition of Brain, challenging the need to delay starting levodopa treatment.
‘Don’t delay, start today’: delaying levo... - Cure Parkinson's
‘Don’t delay, start today’: delaying levodopa does not delay motor complications
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grey
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Every a very interesting article but I am afraid that scientific evidence will not persuade people who have taken against the idea that drugs can help.
Yes, exercise, good diet, optimum vitamin levels all have their place but rather than reduce your lifestyle to fit your symptoms avoiding drugs, take the drugs, live with Parkinson!s don't just survive.
Each to their own, soup. I respect everyone's right to a view. I've tried it both ways and I know which way I want to go. My motto is live for today, keep an eye on tomorrow. A handful of years ago, visiting Paris, I stepped out onto the road, forgetting they drive on the wrong side of the road. I can still see the horror on the bus driver's face as I came as close to the porverbial bus as is possible without being killed.
Wish you all a very merry Christmas!
There is an alternative. I chose Azilect because it purportedly slows progression (may even stop). There is no reason to delay slowing progression. I supplement this med with Ashwagandha, K2, cinnamon, coconut oil.
I have had no progression in two years and others (my wife plus) say I have notably improved... higher energy, no Parkinson's stare, lessening of tremors.
Something is working.
Azilect or selegiline can be used in this way, as a mono treatment in the early days. They inhibit destruction of used dopamine and make more available through recycling process. Eventually, the extra dopamine recycled is not enough to replace that lost by PD and other interventions are required to control PD symptoms. Dopamine agonists, levadopa, supplements etc
The supplements you use, how do they help and what's the next stage plan?
I am aware of Azilect claim to slow down progression but wasn't aware of stopping. Wonderful if it did but I recall similar claims for Ropinerole which eventually disappeared below a convenient horizon.
I occidentally packed what I thought was my selegilene but turned out to be sena, a product I certainly wasn't requiring at that time. Went to several phamacies who would sell me Azilect, but finally tracked down selegilene - there was a massive difference in price as Azilect still under patent.
Whatever's working, hope it contues for you
What is K2
Vitamin K2 - A new study shows that vitamin K2 is able to recover energy compromised nerves and restore their function to normal. While the research is in its initial phases, it could be a major breakthrough for some Parkinson’s patients as well as many people who have shaky or trembly nerves. May 30, 2012 ... At this time it is unknown what dose of vitamin K2 may help nerve problems or Parkinson's patients… but it seems likely that 180 to 200 micrograms of vitamin K2 might be enough to activate your body’s K2-dependent proteins
levodopa-induced dyskinesia (LID) were evaluated for both groups. Although accurate recording of LID can be difficult, the authors attempted to determine dates of onset as precisely as possible. … ...?
grey• in reply to
Your point is?
Roy, is the point you're making .... Where's the rest of the report?
If so, it's the usual annoying way papers are waved in front of our noses, tempting us to start the story then hand over dosh to complete it. I think it's about GBP 30 in this case.
Does anyone know of a way we can get round this?
Hi Grey. This does not sound like science to me. Why is no mention made of MAO-b inhibitors as a treatment option, rather than agonists?
Is it a comfort to know that in roughly 15 years you will suffer from dyskinesia, whether you like it or not? I have not suffered from dyskinesia, but because it goes against the grain with the powers that be, it is not regarded as relevant.
I know that one swallow doth not a summer make but if bobody else is encouraged to try it, it will remain just one swallow!
Happy New Year to everybody!
John
John, you yourself do not claim to be a scientist. Please have a look at some of the literature about dyskinesia and l Dopa therapy. For example viartis.net/parkinsons.dise...
I read, most weeks, on this site, people who are struggling with progressing symptoms but who do not want to start medications.
Your way worked for you, coconut oil works for some people. Great. But for the vast majority of people alternative theories are either not tolerated well or fit well within a regimen of conventional Western drugs.
The study which Grey introduced to the page was a scientific study concentrating on one therapy. It did not mention other drugs, theries, vitamins or exercise. That does not make it non scientific, it makes it focussed.
We must all choose our own way through life with this condition but it is not up to any of us to do other than present evidence, not just anecdotes, to support members who are trying to navigate the maze.
Hi Soup. To begin with, are you in agreement with the statement that levodopa does nothing to slow down or in any way affect the progression of Pd? It only hides a couple of symptoms for a short period of time.
I assume that if the Pd is continuing to progress at about the same rate, whether the patient is or isn't taking taking levodopa, then that test proves nothing that we don't already know. My guess is that the further the Pd progresses the more levodopa has to be taken in order to bring about the desired result. The time taken to reach the point where levodopa does not work would still be the same.
I know of no studies comparing the result of taking levodopa by one group and doing fast walking by another group and doing something different by a control group. If they did, I would expect that the walking group would do better than the levodopa and the control groups. As it would cost next to nothing to do a test on fast walking, I wonder why nobody is doing this. My guess is that nobody, other than patients, want to find out what the result of that study would be.
I am only trying to encourage patients to look elsewhere for something that would really help them to reverse their Pd.
I don't see anything ad in that!
John
John, as I said, walking was not under discussion in either of the papers posted here but neither do either of the papers tell people not to walk or exercise. It was not in their remit.
You know that Parkinson's is progressive yet you continue to use emotive language such as "hides a couple of symptoms for a short time." I would rather say it enables one to live life as fully as possible while taking exercise, eating a healthy diet and all the other therapies that people have felt helped them.
Levodopa does not cause deterioration or bring on dyskinesia any earlier than going without the drug But in the meantime life is tolerable. Hopefully you read the papers which were at the end of the links on this string of posts.
Exercise by all means, I think it is essential even if I have no evidence in human subjects, but the drugs are not our 'enemy' Parkinson's is.
Hi Soup. In my case Parkinson's has not progressed it has got a lot better!
You say that "you have no evidence in human subjects" on, I assume, exercise. Have you not been able to find any information on the studies done by Dr Beth Fisher on fast walking by Pd patients?
You also say that levodopa does not bring on dyskinesia. That is not true. It is the cause of dyskinesia. You do not get dyskinesia form Pd.
Kind regards
John
Does your reference say that exercise alone reduces the pathological signs of Parkinson's such as DatScan evidence?
You realise I am sure that levodopa does not accelerate the condition to the stage at which dyskinesia begins as these references show.
Dyskinesia does not occur unless levodopa levels are higher than the Parkinson's brain can handle. As the disease progresses the drug sensitivity of the brain makes it difficult to manage both the symptoms of PD and the dyskinesia. However, regardless of when you start levodopa, the degree of progression of the condition and therefore the brain's sensitivity remains unique to the individual and their Parkinson's
You seem to be totally against levodopa drugs but have not cited evidence that exercise only works if one does not begin drug treatment.
Why shouldn't people take advantage of the drugs wholst exercising?
Hi Soup. DR Beth Fisher's report does not mention anything about DAT SCAN results. Here is the summing up of her full report on her studies of exercise carried out on Pd patients: "Comparison between pre- and post-exercise readings showed that exercise led to a convergence to normal values in Pd patients, with the higher intensity exercises having the greatest effect."
In other words, their symptoms had returned to normal, as a result of the exercise. I hope this answers your question.
I am sure that levodopa does not accelerate the progression of Pd! Dyskinesia starts when the levels of levodopa in the brain are too high, which I assume is when the patient has to take a higher level of levodopa in order to gain any benefit from it.
I am not against levodopa drugs! I merely say that it would be better for patients to be on an MAO-b inhibitor from the beginning and also start doing fast walking, which produces GDNF in the brain, which in turn repairs damaged brain cells. Then the brain produces more dopamine and the necessity for taking harmful levodopa drugs can be avoided.
Please realize that I am aware that not all patients are physically capable of doing meaningful exercise. Therefore they have to take other drugs and levodopa drugs are probably less harmful than agonists. I am not qualified to compare drugs, but what I have said here is generally recognized as being correct.
Many patients are not offered the option of taking MAO-b inhibitors when the Pd is newly diagnosed, which is such a pity.
The problem of having "On/Off" symptoms makes exercise more difficult than if the patient were not on levodopa medication.
John
John, at last I can see a grudging respect for the correct use of drugs in Parkinson's. I think this is the first time I have seen you state it clearly. It is important that people who are new to the disease keep this in mind.
DatScans have recently beams a more frequently used tool imaging the dopamine producing cells of the brain. The work you cite measures the symptoms of Parkinson's and notes their progression. It is very good that the symptoms seemed to improve but this cannot be interpreted as neural regeneration unless the regeneration is measured.
MOA-b inhibitors are worth taking, we do, but they are not inexpensive. In America there are many people who cannot afford them. Perhaps with the Dat Scan evidence and meta analysis of results, the drug could be made more widely available. DatScan results of neurological status in exercising and non exercising groups would also need investigating.
Hi Soup. We don't have DAT Scans in South Africa, more's the pity. So we have to go by results rather than expensive tests.
I am sure you know that MAO-b inhibitors give you the use of more of your own dopamine, without taking in any levodopa, with its serious side effects. MAO-b inhibitors also have side effects, the main one of which is raised blood pressure levels. These can be kept in check by not eating foods that have high levels of tyramine, such as warmed-up food, over-ripe fruit and vegetables and mature cheese.
I am so enthusiastic about exercise, not because I like it, I don't; but because it has such a positive affect on my Pd symptoms. If you could see me today and were able to compare my condition to what it was in 1992, nearly 25 years ago, you would say that I had got younger and not older. I am no longer stooped and walk with purpose. The Pd is still there and if I forget to stand up straight and walk properly, I immediately fall back 25 years to where I was in 1992. That means that the Pd has not changed but my brain has. Can you explain that?
Best wishes for the New Year.
John
John, your last sentence makes no sense. Are you separating your Parkinson's from your brain.
Thank you for the MAO b lesson, I understand their mode of operation as currently recognised.
Hi Soup. Not knowing you, it is impossible to know what you do or don't know about Pd. Sorry to waste your time, but it all helps.
I have heard it said that the manufacturers of Azilect, Teva Pharmaceuticals, have offered to GIVE patients their drug, free of charge if they are unable to afford to buy it. That may not be true, but it is worth investigating.
I believe that to begin with, getting more use of the dopamine we already have is better than taking levodopa with all its side effects. That is purely my opinion, for what it is worth.
John
I don't disagree.
I don't disagree.
Azilect does have a wonderful program in which they send me my medicine for free.
Qualify financially, fill out a few papers, get a prescription from your dr. and they send the prescription quarterly postage paid. My insurance had refused to pay because of the expense of the drug and it being classified as "experimental" for delaying symptoms. Without the Azilect program, I would not be able to afford the drug. Thanks Azilect!
Hi Heather. I am so pleased to hear this. I hope everybody sees your response to my question. Teva, the manufacturers of Azilect get the credit for this fine program.
Kind regards
John
If fast walking reverses the effects of PD, why is it that people that have been doing fast walking all there lives are still coming down with PD? I know this is happening because I was always a walking maniac doing 2 to 4 miles a day. It was my way of keeping my weight down and it was stress relief and emotional therapy for me. About 4 years ago I found I was not able to do as much and slow but sure got to the point I was not able to do it at all. This was not for lack of wanting to go for those walks. Now that I'm on my Sinemet and Azilect I'm able to walk again. Up to 1/2 mile a day...but it's a start.
Precisely. I stated in another thread that if exercise could reverse PD many people, including my late father, would have reversed it. He walked and, additionally rode his bike as much as 60 miles a day and also used a stationary bike. Exercise can improve symptoms of PD and slow the progression of PD but it will not reverse it. Eventually PD took its toll on my father and he had trouble exercising and then the disease fully progressed. He put the breaks on the disease but did not reverse it or reverted his condition to where it was prior to having PD. Exercise is great therapy and everyone should do it.
I totally agree silvestrov.
Theresa,
Here is what is wrong with the hypothesis that vigorous exercise will reverse Parkinson's by producing neurotropic factors like GDNF.
Many PWP have dementia/nerve cell degeneration as caused by alpha synuclein clumping in the form of Lewy bodies. About alpha synuclein:
"We have in a previous study shown that GDNF, which is known to be a potent neuroprotective factor in standard neurotoxin models, is unable to protect the midbrain dopamine neurons against α-synuclein-induced cell death."
michaeljfox.org/foundation/...
Even more, alpha synuclein is able to spread from cell to cell into newly transplanted fetal nerve cell grafts:
Alpha-Synuclein Cell-to-Cell Transfer and Seeding in Grafted Dopaminergic Neurons In Vivo
journals.plos.org/plosone/a...
For the above reasons is why agents are being developed which help to dissolve alpha synuclein. If AS can be stopped then it is possible to permanently regrow dopaminergic nerve cells.
Here is a prior thread in which I noted various herbs, minerals....including entacapone, which have been shown to break down alpha synuclein:
Hi TheresaCurley. What do you mean by 'fast walking'? When you are walking fast, are you breathing so hard that you cannot talk at all or can you talk normally to a companion walking with you? If you are walking fast enough to be out of breath, but are still able to get a word or two out , between breaths, then you are doing the speed. Unless you walk at that sort of pace you will not be producing GDNF in the brain, or at least, that is what I think. If you don't produce the GDNF you won't have had any improvement in your Pd. I am quite sure about this, but it would have to be proven in scientific studies before it will be accepted by scientists.
No I can't walk as fast as you are saying. I definitely can still hold a conversation when I am what I call fast walking. I have a heart valve condition that starts to regurgitate if I over exert and cause my BP to go too high so I walk at a pace that is comfortable. I call it fast walking because it is a bit faster than I would normally walk if I were walking on a errand or something. So I guess that answers my question, it needs to be strenuous to accomplish the effect of slowing PD.
happy new year for you too!!!
Hi John,
Response to your previous post:
"This does not sound like science to me." Can you elaborate?
"Why is no mention made of MAO-b inhibitors as a treatment option, rather than agonists? " A question for the authors I think. Let me know if you can't find contact details.
"Is it a comfort to know that in roughly 15 years you will suffer from dyskinesia, whether you like it or not?" No and I don't like it.
"I have not suffered from dyskinesia," Yup, I got that detail a while back.
"but because it goes against the grain with the powers that be, it is not regarded as relevant."
Well I would suggest you make an approach to the powers. You have a few problems to overcome, such as:
You can't locate the data you often refer to, presented by a doctor at WPC 1.
You continuously express antagonism to The Powers and often say we don't need them. Hope they haven't followed this and any other places you express such views.
You have three patients, including yourself who have benefited from your exercise regime. Alas, you have no data to support their progress. This would include the exercise programmes, their medication history, objective tests to support your claims etc etc etc.
Further complication is the other two patients are now rather frail, leaving you as the only sample to demonstrate the benefits. It would obviously benefit your case if you have film records of other people.
"I know that one swallow doth not a summer make but if bobody else is encouraged to try it, it will remain just one swallow!" I expect you're right.
I'll say no more as soup seems to have covered most of what I would have added.
Hello John just finished reading your book,and thought it was encouraging,I was told by a neuro 7 years ago "I'm not going to say that you have PD.......and I am not going to say that you don't. In the end he gave me a prescription for Sinemet, I drove home in a daze, thinking this can not be real. I waited for 11 months to take the Sinemet, because I am against Drugs. Finally I gave in because my tremor was causing problems with "LIfe" Taking Sinemet gave me back my Life.... I first did research and could not find anything natural, the Neuro said there wasn't, that I would have to eat acres of Fava Beans LOL I have been athletic all of my life, I am sure that has slowed the symptoms down. I am still able to work, just have to really plan my meds. I have an appt with my doc in Feb and was thinking of asking him to add in the meds you mentioned, he goes by the book so agreeing to take me off sinemet might not be something he would do. Also I am playing around with the MP powder along with the sinemet, it works to a point, still need to figure out the right dosage. I have read that it is not okay to take the meds you suggest with this powder. Love reading your positive posts......
Hi Unsinkable. Thanks for your comments!
Not being a doctor I cannot discuss the merits of one drug as against another. You are in the hands of your doctor.
I am not aware of what would happen if you were to elect to slowly cut down on your sinemet and start doing regular fast walking. I do know of other patients who have done just that with no ill effect. But no two patients are alike.
I also know of a patient who refused to pay the iniquitous cost of Pd medication and he went without any medication for over fifteen years, when he was into his late eighties or early nineties. He was better off than those who took leveodopa medication, as he had no side effects from that medication. The only problem he had was his slowness of movement. But he walked around and managed to do exercise and died a natural death.
Although there is no cure for Pd, we do know that we are able to reverse the Pd by doing fast walking, which reverses some of the movement symptoms and allows us to live a normal life. However, as this does not involve taking medication it is not promoted among
patients. We have had scientific evidence of this fact since 2006. that was eight years ago. It should have been making banner headlines, but it didn't. Why would this be?
John
Hey John, I am doing fast walking,for 40 min, will increase to 60.... I also do Yoga, good for my soul.... The cost of the meds isn't an issue for me now as insurance benefits from work cover 80%, I live in Canada and we have a good health care system. When I am working I HAVE to take the meds, otherwise I would be too shakey, I only have a tremor on my left side,but it is still very distracting. My boss is the best in the world, and he supports me anyway he can. On my days off is when I cut back and try diff things. My doc likes it when I tell him about the excercise, but because it is free, he still pushes the meds. I wish Docs would promote this lifestyle instead of drugs.....but then they would loose their commission on all they perscribe......
Hi Unsinkable. Just as a matter of interest: A friend of mine, who passed away recently, was German by birth. He used to pronounce "Think" as "Sink". In line with that, is it possible that what you have intimated about doctors getting commission from drug companies is possible? Unthinkable!
They would not be so unprofessional as to accept commission from drug companies, surely?
Taking this even further, If a cure had already been found for Pd, would doctors keep it hidden from their patients, because it would be bad for business? Maybe not, but if you asked me that about drug companies I would say that it is highly probable. So what chance do we have of ever finding a cure for Pd?
Happy New Year!
John
John
A correction. As we have discussed before DaTSCans are available in Sth Africa.
Here is one place: quantumradiology.com/quantu...
Re TEVA and free meds this is only available in the US.
Hi Hikoi. I have read through this article and find no mention of Johannesburg South Africa or any contact details outside of the USA. Am I being a bit thick?
John
Ops you are right, i mixed the doctor's qualification with his place of work.
Try this one
cmej.org.za/index.php/cmej/...
Thanks Hikoi. I don't see any statement that DaTscans are available in SA.
Thanks anyway. Happy New Year
John
SPECT and PET imaging of DAT, dopamine receptors, brain glucose metabolism, and myocardial autonomic function are increasingly used to assist with these difficult distinctions. Most of these modalities are already available in South Africa. DAT imaging reveals reduced presynaptic neuronal degeneration in PD and other parkinsonian syndromes, even when clinical features are subtle, while conditions such as essential tremor have normal striatal DAT density (Fig. 6).
I also saw this comment on another site.
Elrina Mischke Beetge ...and I have been doing DAT scans for at least 2-3 years in Cape Town, South Africa. Great going, Tygerberg Hospital!
28 June 2011 at 12:43
Thanks Hikoi. I will make contact with them immediately. Groote Schuur Hiospital, which is the largest in Cape Town and they have never heard of DaTscan. Whether I spoke to the wrong person or not I don't know. It was their Radiology department.
I came across these websites this morning at 3=00am. You might be interested in them:
google.co.za/#q=GDNF%2C+exe...
scholarworks.wmich.edu/diss...
academia.cat/files/425-1886...
intechopen.com/books/toward...
Thanks for all your help.
John
Perhaps the terminology is different. You could ask about a SPECT scan of the brain (same thing).
Hello John yes it would be "unthinkable" if Docs did this, it was just a thought LOL I am hoping.....and Praying there will soon be a cure.....
Happy and Healthy New Year to you!
Hi Unsinkable. I share your prayers but I am not so sure that it will happen in my lifetime so I will continue to do my fast walking every second day and stay clear of stress and away from Pd medication.
Kind regards!
John
Keep up the faith,and I will continue to do the same, along with the fast walking and trying to avoid stress. I still need to take the meds because I want to keep working...........Hope I will at least be able to switch to Azilect and get off sinemet
John / Unsikable
The (latest) current thoughts are to use levodopa as a mono therapy from diagnosis; a really low cost drug, I. can't see there's much of an opportunity to make a quick buck.
Could there ever be a better time for the Pharma's to dig out the cures they've been been sitting on and rush them through clinical testing....
Hi Grey. There is always a way to make money on any sale of any goods. I don't look at this from a monetary point of view, I look at it from the point of view of what the medication is doing TO us. If levodopa does nothing to slow down the progression of Pd and it has long-term cumulative side effects then WHY TAKE IT?
It is not in the business interests of anybody concerned with medication to find a cure for any medical problem! It pays to treat the problem, not cure it! That is a hard fact and I understand it. I don't agree with it but I have to accept it as one of those facts of life!
John
John, why am I getting that déjà view feeling? Going to be sucked into an imaginary world where communication is forced through worm holes, tricky little things that never quite seem to be able to broadcast what I thought I meant. Where the same questions are asked ad nauseam.
WHY TAKE IT [levadop]? Symptom relief. Simply that.
I know you are scathing of us poor mortals moaning about our symptoms. Stiffness you compare to sitting still. Tremor, you can't understand why the victim can't sit on the offending limb or shake it about.
Before you move quickly on to inhibitors and walking?..
Do you understand what PD would be like for a person who was diagnosed ten years ago and received no treatment of any kind: medical, exercise, alternative, surgery etc - they just carried on trying to live the same life as before diagnosis?
Hi Grey. I don't look down on anyone! I look up to any person with Pd, who does his/her level best to improve their quality of life in any way they can. I maybe go like a bull in a china shop but my motives are clear and my heart is in the right place.
As I have said, I don't have a resting tremor and therefore can't know exactly what it means to me to have to live with this very disturbing symptom. I do know that when we use the offending hand or leg that the tremor disappears. When the hand with the tremor is clenched into a fist, the tremor disappears. I also know many patients with a tremor put the offending hand into a pocket, etc. But I want fellow patients to know that when others understand why we have this tremor and that we are not drunk, they tend to ignore it and not feel uncomfortable in our presence.
Are you the person mentioned in the last paragraph? If you are I take my hat off to you. I might say that you are probably better off than a similar patient who has been on levodopa medication all that time! I knew a patient who never took any medication, saying the prices were a rip-off and he was not going to pay those prices. He was slow in movement and quite stooped, but he lived a much better life than others with dyskinesia and other more debilitating symptoms of over-medication.
I am a mere mortal! And I am on everyone's side, I just want to tell patients that there is a better way of dealing with Pd.
John
John,
Certainly not the person un-medicated after 10 years - I've read of people like that and I feel for their self imposed suffering. I am a reluctant pill taker, preferring to give my body chance to heal itself, but resort to help - not give in - when I recognise I need help.
I delayed PD drugs after diagnosis, started, gave up, restarted. Dopamine agonists, later added MAOb inhibitor later added levodopa. That's where I am today, 10 years after diagnosis, agonist now reduced to minimum after side effects (visual hallucination, oedema, sleep/tiredness) became significant problems. No significant dyskinesia. Good degree of motor fluctuations.
My previous post was incomplete, the closing paragraphs failed the cut-from-text-editor / paste-to-forum operation.
I invited you to describe the condition of this un-medicated person. I would then use my experience of being 'on' to describe the same guy had he taken meds. The improvements would then answer your question WHY TAKE IT.
You ask this question often, but for some reason never seem satisfied by answers given. Up for it?
Hi Grey. I am always very aware of the 'Window Period' when taking levodopa. During that period, you receive a very real benefit, which slowly reduces, as the medication has to be increased. For ten to fifteen years you can live an acceptable life, but after that window period has closed, you are left in a very invidious position. The levodopa does not work any more and you are unable to move.
That does not happen when you don't take levodopa, at least, I don't think so. That is why I mentioned this man who took no drugs. I would, with the benefit of hindsight and knowledge gained, rather go the route of an MAO-b inhibitor and an exercise regimen. That is why I ask, "Why Take It?" meaning the levodopa.
This last paragraph assumes that the patient is capable of doing serious exercise. There are many people who won't even consider doing fast walking, whether they are capable or not, and they seem to be in the majority of patients I meet. Those are the ones I try to persuade to re-think their choice of taking levodopa, before trying my approach.
In the end, we cannot reverse our chosen route and have a second chance to try something else. It is then too late!
John
Windows John windows
'' During that period, you receive a very real benefit, which slowly reduces, as the medication has to be increased. For ten to fifteen years you can live an acceptable life, but after that window period has closed, you are left in a very invidious position. The levodopa does not work any more and you are unable to move.''
Before diagnosis I had exhausting tremor,so bad I had to sit on my hands. I couldn't get my food to my mouth, I couldn't write my own name, my arm swing was completely absent. I went through two replacement clutches on my car and blamed faulty parts not my driving.
Eventually I didn't want to go out alone. My quality of life began to disappear rapidly.
Were am I now. My eleventh year since diagnosis after various tests and eventual DATscan I have no tremor whatsoever, I write, I read ,I have clarity of thought, I drive in my locality, I travel further by train boat or plane. i have travelled Europe North America and this year plan to travel to Australia and New Zealand.
I thank medication despite its imperfections for giving me back my life to a level I never imagined possible.Its not perfect but I manage PD and its challenges aided and abetted by my medication.
Im still very much able to move,today I intend to climb a ladder and paint a ceiling.Its at least 3yrs since Ive increased my medication.
Hi Balderdash. You have underlined the most important fact about Pd, 'No two patients are alike!'
I cannot tell you that you would have been able to start doing fast walking, I don't know! If you had been able to start doing fast walking, who knows what your condition would have been like now?
Balderdash, I have never said that what I have done would work for everybody! I am very pleased to hear that you have been able to do all the things you have, it is incredible!
I wish you luck for the future and hope I have not upset you in any of this discussion.
Kind regards
John
Upset me,of course not.I am representative of the fact that drugs do work and you are not sentencing yourself and your future by taking them.In no way am I denying the benefit of exercise.That is my stand point,nothing to do with the fact that we are all different.Although that should perhaps illustrate to you that you are preaching to a limited audience.
However If your book benefits a few youve achieved something and that is commendable.We dont all write books but dont forget we have the same mutual purpose when we post to help others,without imposition.
Hi Balderedash. How can you say that, "You are not sentencing yourself and your future by taking them (Levodopa drugs)? When you take levodopa you enter into a window period, at the end of which you become completely immobile, because no matter how many you take you can derive no benefit any more. You are then in a very bad place.
I would never want to get into that position. I would much rather start an exercise regimen and start getting better. No drugs that I know of can make that claim.
John
I feel better than I DID 10yrs ago, weather I am or not that is what matters to me.I most categorically had/have advanced PD as my Dat Scan indicated.I am under no illusion that there is a cure on the horizon,but that doesn't take away my hope for the future.Drugs support my illness,very well but I do much to support myself.Like me you have improved your health situation by taking control of it.You feel better the reality is you have Parkinsons disease,youve taken measures to improve your health that work for you.By all means share your strategy but not at the expense of denying people medicines,you are absolutley not in a position to do that.
Exercise and medication and alternative therapies are partners and people need to make supported lifestyle choices.
Levadopa is still the gold standard support therapy when required for anyone with PD
Hi Balderdash. I think we have to agree to disagree. I received a note from Dr Norman Doidge this morning advising me that his latest book is being launched on the 27th January. You will be able to read what he says about my Pd history.
Kindest regards
John
I looked on Amazon but his new book is not listed...can you provide us with more info on Dr Doidge's newest book?
Hi Nourilo. The book's title is "The Brain's Way of Healing.". It is due to be launched on 27th January.
John
Thank you John and Balderdash. I ordered the book with my Kindle and I'll get it on the 27th. John. are you mentioned in the book?
Hi Nourilo. Yes there is a whole chapter on my Pd history. I have not read it yet but will get it soon.
John
I understand what neuroplasticity is,and I believe it is possible
I know that it has a place with or without conventional medicine. I assume you are talking about ''the brains way of healing''.Explain to me why its ok to take MAOI drugs but not levodopa,a drug is a drug.
Neuroplasticity requires the dedication of a serious athlete with the supervision of a personal trainer. Areas of the brain which control the parts of the body subject to such training increase in size due to creation of new connections. Forexample, the fingers of a pianist, the legs of a runner. The other requirement is repetition. Pushing yourself to the limit over and over again.
Hi Balderdash. I have never talked about MAOi drugs. I assume MAOi means Monoamine Oxidase inhibitor drugs. The drug I refer to is an MAOb inhibitor. which inhibits the breakdown of dopamine in the body. It also inhibits Tyramine, which is a bit problematic. I hope this answers your question.
John
MAOI.s Are categorized as MAOa and MAOb
quote this is direct copy from your webpage
'''MAO-b Inhibitors''
Do You believe that all Parkinson’s Medication will slow down the PROGRESSION of Pd?
No! To the best of my knowledge, there is only one type of Pd Medication that the manufacturers claim CAN POSSIBLY slow down or even REVERSE the progression of your Pd!
ARE YOU ON THAT TYPE OF MEDICATION?
''To find the only medication that the manufacturers have claimed to be proven, in scientifically controlled double-blind studies, to be able to SLOW DOWN or even REVERSE Parkinson’s Disease, all you have to do is place your order for this fascinating new book:''
‘REVERSE PARKINSON’S DISEASE!''
You expect people to pay for information for a drug you promote but don't name.
You name and constantly undermine the value of other medication THAT IS THE GOLD STANDARD TREATMENT
I can guess what the drug is but do you really expect people to pay for this information by purchasing your bookl
Hi Balderdash. Oops! I am astounded that you think I am withholding the name of Eldepryl. I have written this name in so many threads on this website that I felt that all MAO-b inhibitors did the exact same thing. I apologize for creating this oversight on my part. The others are Azilect and Parkilyne, which is a generic of Eldepryl.
John
John,
You often tell us things like:
Doctors, we don't need them;
Doctors hide things that don't make them money;
They conspire against you, denying your PD diagnosis;
And so on.
Do these sentiments apply to Dr Doidge. Can we trust him?
Hi Grey. When have I ever said, "Doctors, we don't need them"?. That is ridiculous! When have I said, "Doctors hide things that don't make them money"?
Yes some neurologists have got together and told the audience at a Parkinson's meeting that, "I do not have Pd", & "I claim to be cured without the use of medication" & "I use the Parkinson's Association to sell my books". All of those claims are false. I have never said or done these things. Yes, I do sell my book to people with Pd, but who else would want to buy them?
I have said, "How can a neurologist make a diagnosis without having examined me?" I have said that it is not in the commercial interests of doctors for patients to get better. That is unfortunately true. Think of the losses that would be incurred if all their Pd patients were to get better and stop taking any Pd medication. It is unthinkable!
However! There are many very good neurologists, who are very professional in their dealings with patients, but on the other hand, who knows?
John
WHY TAKE IT you ask again! You've answered that question in your first paragraph:
“For ten to fifteen years you can live an acceptable life...”
To achieve that you take some form of medication to replace the dopamine lost as the result of PD.
If you look at the first post I made when I created this thread (which incidently you have dominated but I cannot recall you contributing to it) you will see that there is a challenge to the idea that delaying the introduction of levodopa delays motor complications.
So why not take it?
Unsinkable,
Coming off sinemet, I've known a couple of patients voluntarily come off sinemet and their neurologists helped them by giving guidance on the correct way to do it, not too fast as to risk damage.
Both of them were going to do it alone, but were advised by patients in their forums to speak to their neurologists and were pleasantly surprised by lack of opposition and support they received.
Grey
Hello Grey, thank-you for the encouragement, my plan was to switch from sinemet to Azilect, not sure if my Doc would think thats okay, I go in Feb so I will just ask him then
Here's hoping he's full of surprises!
Yup, I will find out in 6 weeks 
Hi Gray. Had I have gone to my neurologist back in 1963 and been diagnosed with Pd, I would not be alive today to tell the tale. I would have been treated with sinemet and within 15 years I would have probably been unable to move.
That is hypothetical I know, but it is now over 22 years since I was finally diagnosed and instead of being unable to move, I am fit and well and enjoying my life.
But if you choose to take medication, rather than do meaningful exercise, that is your choice!
I am sorry to have taken over your thread.
John
I was reluctant to start c-l dopa in 2004 when I was being seen at the Mohamed Ali research center in Phoenix. The MD was a man 15 years my senior. He knew I was a physical therapist and asked me if I had any experience with pd patients prior to the implementation of c-l dopa. Since I was aware of the previous rapid degradation of most of the pd victims I trusted his knowledge and experience. I find the dyskinesias minor compared to the dystonia .... my initial symptoms.
Thanks for your comment " I find the dyskinesias minor compared to ..."
This is a point made to me by two other patients who have dyskinesia.
No doubt, there may be others who come forward and disagree, but opinion is welcome.
I feel a sense of perspective regained. I was getting sucked into John's implied hell, quite forgetting I know or meet a number of people who have dyskinesia and get on with their lives.
I know some people will stare at me, but I'm over that. I get funny looks when I go off and shuffle along. If I'm honest and the tables were turned, would I not have had a quick peek?
I am new here but here is my accumulated wisdom (or misinformation that I believe).
It is important to note that PD is like snowflakes… no two occurrences are exactly alike but there are things to try that work for others that may very well work for you.
There are current meds and other non-med meds (homeopathic) that are directed at three distinct objectives:
-Slowing the progression while we wait for ‘the cure’
-Treating the symptoms (tremors, stiffness)
-Treating depression that many get when they are dealt this hand.
I take Azilect (rasagiline) because it is believed to slow progression. A worldwide, multi- institutional clinical trial of rasagiline ’s potential for neuroprotection was published in 2008 and follow-up data from the original studies has also been examined closely. These results suggest that the use of rasagiline earlier in PD may offer the greatest long-term advantage and modify the symptomatology over time, although true disease modification remains unproven
I took a Dopamine Agonist to alleviate my tremors. but the side effects including rapid weight gain made me stop.
I take Prozac (Fluoxetin to be exact) – maybe I am a bit Pollyanna… maybe this is why.
I also take B-12, Ashawaghanda, Cinnamon, D3 and K2. I have heard Coconut Oil also has positive effects and just added it. I have heard that PD'ers trying Cinnamon (Ceylon only) have had some remarkably improvement.
Do they work… they seem to be for me. I have less tremors, move better and am much more productive. I am not going to stop to find out
Movement - Exercise is the best treatment for slowing progression, e.g., (shadow boxing, dancing around the house, walking or just getting up from my PC at least once every half hour. Tai Chi (or just moving exaggerated slowness while shifting weight from foot to foot) sometimes with eyes closed preferably in the middle of a big room. Balancing on one foot than the other. Bottom line: you got to move it… move it! You got to move it… move it! Develop an exercise program that works for you and do a little more each week.
When you are not moving, exercise your mind - for me, Sudoku and Cryptogram – do them every day. Also, Blogging with you…
Get a good night sleep and take a nap… PD drains you. You need to recharge! If you are too anxious or depressed to sleep you may need Prozac and/or a sleep aid. Get your zzzzzz’s.
The best thing you can do to manage tremors is to take your medication consistently and on time. The timing of medication for Parkinson's is key. it's important to work with your doctor to adjust your treatment schedule accordingly. Take supplements with meals.
Drink a lot of water.
Hope some of this helps you too!
Dr Beth Fisher is quoted on page167 of Johns book,her experiment involved body weight supported by harness high intensity training using a treadmill.Her research was about the value of high intensity training and neuroplasticity.
I think John that the science is sound but it is not a validation of fast walking as you promote it .Im sure you understand the concepts of HIT and neuroplasticity . I have no problem with the fact that your walking regime works for you and may help others.I do strongly object to you constantly undermining the value of PD MEDS apart from the one that you take.Why do you come here.To promote the path to wellbeing .That path should be wide not narrow I havnt read your book I came across page 167 researching Dr Fisher
.I took my first medication the day I was diagnosed before I left the hospital .Unwise yes I should have waited until I was home.That was 11 yrs ago, my symptoms were profound.PD drugs gave me back my life,I can walk naturally,normally,I have an arm swing,I can write beautifully,My tremor has gone completlely.You could say drugs have reversed my PD,reality is they help me live with it and long may it continue.. People need to learn how to maximise the benefits of there medication regime not be put of taking it, or struggling on minium doses.
Hi Balderdash. Where do I start? In the first edition of my book I spoke about Dr Haas and his explanation of NGF (Nerve Growth Factor), which is the same as GDNF, I think. I also spoke about Dr H. Braak, who is a leading researcher on Pd. They were responsible for bringing GDNF to my notice. You can Google them both. Somehow, between the second and the third editions of my book, that information got left out, in favour of Dr Fisher's report from the 1st World Parkinson's Congress. I do not have the SPRING Times journal from which I took the extracts from that report on that congress, but in it, they spoke about GDNF, but I see that it is not mentioned in latest rendition of Dr Beth Fishers address. Whether it has been edited out or I am mistaken, I do not know. All I do know is that I did not invent this. The mystery deepens!
When you say undermining the value of Pd meds, how can I possibly undermine something which I have not tried? I did use Eldepryl until 2002 but have ceased using any Pd medication since then. I am only attempting to bring about an awareness that there are other, more successful, in my opinion, ways of treating Pd. Levodopa medication has a window period, during which it is less and less successful until it ceases to work at around an average of 15 years.
After 22 years of being diagnosed with Pd and 51 years after the first symptoms appeared, my condition is better than it was in 1963. Okay, I have aged 51 years since then but the symptoms are now better than they ever were in 1992. That does not happen with medication, at least not to my knowledge. So, you can see why I try so hard to bringing about an awareness of this other possibility. My approach would be far more successful with newly diagnosed patients before they begin to get committed to taking levodopa. The longer a patient is on levodopa the less likely he/she is to be able to derive the same benefits as I have. That is not to say that it is ever too late, because many patients I know have had varying levels of success with exercise. It takes a long time to reverse and time is not one of our strong points.
Levodopa definitely does not reverse Pd symptoms, it merely hides them for short periods of time!
Kind regards
John
Hi Grey
I would dearly love to have a DaTscan, but for the life of me I cannot find any contact information outside of the USA for making contact with anybody in South Africa who knows anything about this.
John
John, don't think I posted about DaTscan. I think I posted you about a week ago but think it's dangling about somewhere above.
Have you tried UK, we Brits moan a lot about how our health service is free to all yet when we fall sick in other countries we have to pay for everything.
G.
Hi Grey. Sorry about the confusion. It was Hikoi who kindly spoke about DaTscan. Our health system is more or less defunct. We have a fairly well-run private health system that is very expensive and a public health system that is so badly run it is useless. The beds in the hospitals have no sheets or pillows, because they all get stolen. The patients have to bring their own, and of course they also get stolen. If patients want to see a doctor they have to stand in a queue all day and are lucky to see anybody that day. The queues start early in the mornings. The doctors are good but so terribly overworked. The equipment is not state of art but it is there. The wards are not clean and the service is terrible. I hope someone in power sees this!
So don't complain!
Happy New Year!
John
Hi John.
I'm beginning to realise why so many people on this forum are very suspicious of their local medical services, and why they question the integrity of the big pharmas. Your description of South Africa's health service comes as a surprise to me as I think of you as a relatively well off country and would have expected a higher standard of care.
I would anticipate we Brits would not be so trusting if we had to procure our own meds and pay doctor's fees. We have concerns over other professionals (lawyers?) who charge fees and expenses, fearing that greed might come before service. Thus we are capable of developing similar feelings should there be a move to a more commercial health system, a propect which could become a reality if more politicians view this as a way to resolve spiralling costs of health care.
I presume that, what appears to me to be a geographic enthusiasm for alternate medicine, is fueled by this mistrust. Concerns over the state of their local health service will not promote greater trust!
Conjecture built with a generalisation or two I accept, but it would possibly make us more tolerant of other member's views if we knew: in which country they live; how their doctors are rewarded; and the state of their health service.
Grey.
And a Happy New Year to you.
Hi Grey. Our country is slightly different to most others. OK it is totally different to any other.
When the whole population over the age of 17 was entitled to vote in 1994 the new government set about reversing the previous laws and their main aim was to find or create jobs for black people. All well and good! But because very few of them had much formal education they had little or no chance of getting jobs requiring academic qualifications. So they closed down all training colleges, including those for teachers and nurses. So there was no need to have a nursing qualification in order to become a nurse. Guess what? The public hospitals are all staffed with unqualified people. They thought that doing the job was the best way to learn how to do it. DUH!
They also passed laws making it illegal to only have white staff and the staffing ratios have to be the same as the ration of people living in each area. So if black people account for 85% of the population then 85% of the staff must be black. All well and good, but how do you run a business with totally untrained staff? You don't! In private business we have to find ways to run our businesses but in the public sector, where all the management are now black and they have no idea of how to run a hospital or a school or anything else, you can imagine the chaos that exists in these places.
Somehow we hope that common sense will prevail and after 20 years there must surely be enough black educated people around to start turning this mess all around. Meantime, if you are white and unemployed, which vast numbers of them are, you have to go to a hospital where you have to take your own linen and pillows. You will be attended by untrained nurses and doctors whose pass rate only had to be 50% or thereabouts. You have no guarantee that the hospital has any medication and you hope to get better.
Needless to say, all the black people in top jobs would not dream of using public hospitals They only use the best hospitals and hotels and guess who pays for it all? I would not dream of living in any other country but it is very difficult living here and staying positive!
It is exciting living here and most of us are still upbeat about the future. Our President has five wives, each of whom has their own mansion and luxury car, They each have all the privileges of the first wife and enjoy overseas travel, first class of course, and they will each receive a pension. They are not the only people who have more than one wife. The Zulu king has many wives and last year he exceeded his R54 million allowance and demands more to settle outstanding debts. Our national airline is bankrupt, mainly because of all the people entitled to free travel overseas and internally.
I know this cannot last, but Bob Mugabe up north has bankrupted his country and we now support them as well. I think you guys also chip in on that one. How long can the madness last?
Be happy with your NIH and your medical system, it sounds like heaven to me!
John
.... but it is very difficult living here and staying positive!
With a system like that, staying alive must be a challenge. What do you do if you're suffering a life threatening problem, emigrate?
And you're the nation who did the first heart transplants......
Hi Grey. Yes life here is a challenge, but we love our country and the people in it. You have to understand what has happened here:
In 1967, when I first traveled to England, our Rand was worth one Pound. It is now worth five pence. That means that our savings are worth nothing and we cannot even think of emigrating at our age. Our private hospitals are still good and our doctors are mainly top class but it costs a fortune to use them. We all try to live healthier lives, hence the exercise etc.
Our friends all live here and some of us still have our families living here, but any young white person with a modicum of common sense has to leave because they can never find a job here. Our graduates also leave as soon as possible, but even that is getting a lot harder because of the world economic situation. We just have to tough it out! Our grandchildren and children are all graduates or in the process of becoming graduates. Most of our friends have their children spread all over the world It is a nightmare for them. It must also be a nightmare for people living in England and the USA, seeing people coming from SA and taking jobs that they would like to have. There are no winners in this situation.
Kind regards
John
Hi Hikoi. Thanks for this! Is a Spect scan the same as a DaTscan?
I will be phoning the Tygerberg hospital this morning and will let you know what they are able to do.
Kind regards
John
I dont know if this is exactly right John but your question might be similar to asking if a chest xray is the same as an xray. Yes and no as it is just one type of Xray. As I understand it DaTscan is just one of the scans that can be done with SPECT imaging.
DaTscan is the trade name for Ioflupane I-123, which is a radiotracer used in a nuclear medicine imaging test called brain SPECT.
I think the hospital /university research does functional brain SPECT". This sounds like DAT to me but I may be wrong.
Hi Hikoi. I have made contact with Tygerberg Hospital but I first have to have a referral letter from a neurologist before they can do a scan. My neurologist only comes back from leave next week, so I will take it further then. The cost is R23 340.00, which is roughly 3 times my monthly pension. But if it helps my cause I will do it.
Kind regards
John
Excellent news John. You are also waiting for 'the book' to come out this month if i remember right.
Hi Hikoi. The book is being published on 27th January and I will soon receive an advanced copy to read. As soon as the book has been published I am free to talk about it.
With regard to delaying the taking of levodopa, they didn't compare the taking of MAO-b inhibitors before taking levodopa! Why would that be?
John
Hi Hikoi. Thanks! My point is that there is more than one choice, when it comes to medication and that choice is not limited to either levodopa or agonists.
I know that is not the reason why you posted this website for all to see, I wanted to stress to everybody else that we have other choices as well.
Sorry to be such a pain!
John
